Online activists are silencing us, scientists say | Hacker News Reader

Online activists are silencing us, scientists say

reuters.com

503 pointsglassworm391 comments

Over the next 20 or so years, expect a lot of syndromes/conditions to be reclassified, as Michael Sharpe puts in the article, as "biological condition[s] that can be perpetuated by social and psychological factors.".

I struggled with RSI for a couple of years until I read John Sarno's "The Mind-Body Connection" on the recommendation of someone from HN. Sarno's thesis is that many chronic pain conditions (those without a clear physical mechanism, such as RSI or chronic back pain) are psychosomatic.

A lot of people struggle with this idea, and take it, as they did in the article, as "my pain isn't real". Sarno's book very clearly lays out that the pain is real, it's just caused by processes in your brain, not the rest of your body.

Societally it's all very strange. We accept a "mind-body" connection for certain types of disorders, but, not for others. Anxiety sufferers can fool themselves into thinking they're having a heart attack and hyperventilate. Why is it crazy or anti-scientific to think that the same can cause other symptoms? We've searched for decades for body-based mechanisms for these chronic pain conditions, why not consider causes in the brain?

When I was a child, I would suffer from terrible muscle contractions in my calves. I would get a charlie horse in the middle of the night, and it would not go away completely for over a day. I couldn't put my foot flat to walk properly, and it was very painful. After about a dozen of these attacks, I noticed a pattern - they would occur on the night before something that I was dreading - a test I wasn't prepared for, a school dance, etc. Once I realized this, it never came back again. On the outside, it appeared that I was faking the muscle issues, but actually, my mind was causing charlie horses deliberately. It was very odd, but will always stick with me that the connections between body and mind are not well understood.

I've had something similar, where I would get a massive cramp in the night while I was dreaming. It was definitely, IMO, caused by something going on in my mind. I had to learn to wake up immediately when this happened and exercise conscious control of the muscles to stop the cramping to prevent any further damage, as it could really cause me to have seriously sore leg muscles for a day or two afterwards.

I haven't had this happen for at least a year or so now, and it's quite likely this is linked to various major changes that have happened in my life since then.

But yes, I totally agree with you about your conclusion.

Wow, that's like the exact opposite to my nighty calf cramps.

I tend to get them when I'm way too relaxed as that makes me "stretch out" during sleep, which I kinda notice in half-sleep as feeling great, until I seemingly "overstretch" and get fully woken up to a painful calf cramp.

Tho that whole problem kinda fixed itself once I started taking Magnesium supplements before going to bed, to help with teeth gnashing/neck pains.

Magnesium is an interesting one, because all sorts of muscle things (cramps, restless leg syndrome etc.) can be caused by, or helped by, both high and low levels of magnesium. It seems to be something that needs to stay within a certain band for muscle control to work properly.

Anecdata +1 but taking magnesium every now and then has done wonders for my leg cramp issues.

> Once I realized this, it never came back again.

This was the same for me with RSI. It was simply the act of realizing it was psychosomatic and caused by stress that made it disappear completely.

Mind-body CAN be the causative factor. But sometimes correlation only.

A friend's wife died, and he got sick afterwards. Grief? Illness went away when he stopped eating badly (his wife had prepared most meals for him).

Of course, he had switched to a pretty bad diet, and he was older, more likely to be affected by diet.

Cramps, for example, can be often be prevented with potassium, which is in plants. Some people don't eat plants as much when they are stressed, leading to cramps.

Where I'm from (Ukraine) RSI is pretty much unheard of, and I only learned about it when I moved to the US (when I was 21). Interestingly not long after learning about it I've started experiencing pain in my wrists and started to get really worried about getting an RSI. One of my coworkers recommended Kinesis Advantage keyboard, so I bought it off ebay and started using it and the pain disappeared. Interestingly I've seen this keyboard quite a lot, off top of my head I think something like 5% of engineers were using it.

I'm not saying that RSI doesn't exist, but I'm now positive that in my case all those RSI-like symptoms were all in my head -- some kind of a nocebo (an anti-placebo) effect. When I was 27 I had to do an MRI of my hand for an unrelated reason (boxing injury), so naturally I asked them to do an MRI of my wrist since they'll be immobilizing my hand anyway [1]. So either my wrist was healed in those 6 years, or it was fine all along -- can't tell because I didn't have a "before" picture. Just in case, I explicitly double checked with another doctor if he was sure about my wrist and he said that my MRI could be used as a textbook example of a healthy wrist joint.

I am now wondering if all those "mental-health awareness" things could have an adverse effect. I wonder how many hypochondriacs self-suggested themselves an OCD or an ADHD, and while marinating in those thoughts they somehow turned those thoughts into an actual condition (self-fulfilling prophecy?). Like ... you guys already have tidy people joking about having an OCD, and people who like to wash hands are joking about being a germaphobs.

edit: I think I've seen an article "willpower is limited only if you believe so" posted somewhere here on HN, but I can't find it now. Anyway here's another link: [3], and here's the Stanford study they cite [4]. This can be another example of people self-suggesting themselves a handicap.

[1] There are a lot of posts on HN talking about healthcare costs in the US, so I'll share my anecdote too. I did an MRI in Ukraine and the whole thing was like $80: $50 for the hand and extra $30 for the wrist. The machine was 1.5 Tesla one, but there are other clinics that have 3 Tesla machines too (a little bit more expensive). Scheduling an appointment was done by a phone a couple of days in advance and didn't require any doctor referral. There are many small private clinics offering imaging services (MRI/CT/Ultrasound/...), and all of them are very easy to Google and all of the prices are available online, for example: [2]. After the procedure they give you a CD with the info, a print-out on some largish transparent plastic, and their staff doctor's conclusion. You usually take those results to your specialist doctor of choice.

[2] For example: https://translate.google.com/translate?sl=auto&tl=en&u=https... all prices in UAH, to get rough USD estimate divide those numbers by 25 (or 26.75 to get exact number as of 2019-03-13 if you're OCD).

[3] https://lifehacker.com/your-willpower-is-only-a-finite-resou...

[4] https://journals.plos.org/plosone/article?id=10.1371/journal...

> those without a clear physical mechanism, such as RSI or chronic back pain

But RSI has a clear physical mechanism. I don't know as much about chronic back pain, but considering how much physical stuff there is in our back, I'd assume it's similar.

Or does "physical mechanism" mean something other than it seems to mean?

John Sarno's theory is that such pain is indeed caused by physical mechanisms ... which are triggered by psychological mechanisms. Such things are common, like a blush to the cheeks, hair on your arm raised by fright, erections and other sexual responses, etc.

He was also clear that this is not always the case, and that direct physical causes should be looked for by a specialist before pursuing psychological remedies.

Yes, there’s some physical mechanism, but triggered by emotional responses.

Speaking for myself, I don’t have serious back pain, but when I occasionally experience momentary strong anxiety my back muscles get noticeably tight/strained, especially while sleep deprived. Drinking 1 beer typically alleviates that, or I’m sure some other anxiolytic medicine could.

I would not be surprised at all if chronic severe anxiety (e.g. taking care of a chronically ill child, working a high-stakes short-deadlines job, living with an emotionally abusive person, experiencing trauma and then suffering PTSD, ...) might cause me to develop a real back pain problem.

Yeah, "clear physical mechanism" is a hole I could drive a truck through. Clear to whom? And what does "clear" have to do with "verified through rigorous scientific exploration of this and competing hypotheses"? As Mencken said, "Explanations exist; they have existed for all time; there is always a well-known solution to every human problem — neat, plausible, and wrong."

My experience with most serious medical things is that doctors have a clear general-audience explanation, because part of their job is making patients feel like they understand what's going on. But if you get into the details, the good doctors will say, "Well, actually, the picture is much murkier, but here's what we know based on studies X, Y, and Z, but there's a lot yet to learn."

Back pain in particular is an area of open dispute. Many people have many theories, all of them very hard to test. When I was dealing with back pain, a spine-center doctor recommended a book called "Treat Your Own Back" [1]. It was hugely helpful to me. And in it, the doctor explains that he hit upon his method because a patient came in, used a piece of equipment that was set up totally the wrong way, and said, "Gosh, doc, that was great!" It led him to reexamine what he had been taught about backs, coming up with a different "clear physical mechanism" to explain a common class of pain.

That we are still figuring something out does not mean it's psychosomatic. It doesn't mean it's not, but a doctor suggesting otherwise is doing the medical equivalent of "god of the gaps" theology, where anything mysterious is attributed to your preferred cause.

[1] https://www.amazon.com/Treat-Your-Back-Robin-McKenzie/dp/095...

What is a person, if not a whole bunch of physical mechanisms under the control of a central nervous system that is itself another physical mechanism?

For example, everyone’s disks degenerate with old age. They squash, bulge, even herniate. But only some people experience notable pain from this. And back pain has been a growing epidemic for decades!

Are there physiological differences between people that explain this? Probably. But I suspect in many cases Sarno is right, it’s not purely physical. Look into neuromatrix theory and non-proprioceptive pain for a somewhat more scientific attempt at an explanation.

In practical terms, "physical mechanism" means something a GP can see or test for, rather than relying on asking the patient whether it hurts.

to be clear... RSI is repetitive stress injury, correct? Or strain?

> the pain is real, it's just caused by processes in your brain,

I don't find this particular statement very revolutionary. We have known for a long time that physical pain is manufactured by the brain as an evolutionary tactic to help us prevent further harm to ourselves. If we didn't "feel pain" when we were on fire, we would burn to death.

I completely agree with you, but our society has such a stigma around mental illness that if you tell someone their back pain is caused by repressed emotions, you get what happens in the article.

> if you tell someone their back pain is caused by repressed emotions, you get what happens in the article.

But...you would (or could?, or should?) never tell someone that, because how would you know? Maybe there is some link but to conclude that it could be the case is pretty silly.

So it's not like that's a stigma, it's just a statement not based in fact that evokes a strong reaction because you're telling someone why they're feeling a certain way when in reality you have no idea at all.

Well, repressed emotions is a term that doesn't have any clear physiological meaning and I think that might be the problem. I see a lot of success around the acceptance of the term "stress" which has clear physiological as well as psychological meanings, both for professionals and lay people. Maybe we need more terminology like this.

Oh so you've already made the conclusion its a mental illness?

You are the reason why such reactions occur.

honestly and earnestly, i also think a psychological condition that can (in most cases) be adjusted is taking society seriously. without a filter, and in some cases a firewall... "society" can also be the source of chronic pain.

Maybe it's because you're not a doctor

"I don't find this particular statement very revolutionary."

It depends on how you read it, since the short 12-word summary could be read dozens of different ways. There's ways in which trivially, of course, duh, pain is in the brain, where else would it be? But there's also ways in which it stands in stark contrast to what most people implicitly believe.

Take your (you, the reader, not kimmy1 specifically) beliefs about the nature of pain, and explicitly hold it up to the concept of phantom limb syndrome: https://en.wikipedia.org/wiki/Phantom_limb And make extra sure to read the section about mirror box treatment. (That it works at all, for anyone, is the important point, not whether it's a miracle cure for all sufferers.)

You may already have heard about these things, but have you explicitly examined your beliefs about pain to ensure they incorporpate these ideas?

I don't know about fibromyalgia, but it wouldn't shock me that much if there is something a lot like phantom limb syndrome out there that confuses us by causing phantom pain in body parts that exist. For eminently rational reasons it would be a long time before we worked out way down to that hypothesis.

> There's ways in which trivially, of course, duh, pain is in the brain, where else would it be?

Actually nociceptive pain is by definition not in the brain and is fundamentally somatic. However somehow it is privileged by society: it’s “real” pain while those others are “all in your head”.

The sad thing is that the scientist is validating these phenomena yet the critics don’t understand that.

It goes a level deeper than that. Learned from dating a very good massage therapist for awhile, our minds relatively commonly cause physical changes that lead to pain symptoms.

E.g. you subconsciously favor your back, leading to overexertion of other muscles, leading to physical degradation and pain from those muscles

Talking with her was eye opening on the amount of sub-major muscle "stuff" that is constantly subconsciously working in our muscular-skeletal system.

"You hold tension in your neck" is a remarkably complex statement (and solution).

Is that considered psychosomatic, though? I don't think this fits the topic at hand.

It's a blurry line. If I've caused permanent damage to my back because I've been subconsciously holding it incorrectly for decades, is that damage psychosomatic?

The point being, that when you are on fire, you feel pain as a consequence of your pain receptors in your body firing in response to tissue damage. Depending on circumstances, You can also feel pain without these receptors firing, and you can also feel no or little pain when these receptors are firing a lot. You can say that the pain originates either from the receptors or from something internally in the brain. Naively you might describe the first type as 'real' and the second as 'imaginary', which is of scant use to downright dismissive of the person actually experiencing said pain.

That is true about acute pain.

It is not true about chronic pain. Acute pain will get better if you rest, chronic pain won't.

Most chronic pain sufferers will feel better if they behave as if the pain doesn't exist, increase their activities, get less depressed, feel less pain...

The core of fibro identity, however, is that fibros don't experience the benefits of exercise, they get the pain but they don't get the gain. That might be true. I have seen fibros try something new and get hurt even more quickly than heroin adicts.

That's because most cases of fibro is undiagnosed small fiber neuropathy.

Nothing to do with psychology, and everything to do with destruction of peripheral nerve tissue.

I think the point is that with the common understanding of bodily pain there's usually a physical initiation like a pin prick.

OC is saying that the pain can originate in the brain itself without any external force on the body.

It is not crazy at all. But realize that patients that suffer from these disorders have likely been hounded for decades by doctors, employers and various government workers. I think they have heard all the variants of "I think you are faking it" that you can ever think of. That doesn't excuse the patients death threats, but one should thread carefully.

There are also a lot of diseases that were thought of to be psychosomatic that turned out to not be such as peptic ulcer disease. There is also gender bias in play. Pain or illness affecting males are more likely to be classified as physiological while the same thing affecting females is more likely to be classified as psychological.

Your comment reminds me of the sensation I get in my legs when I watch someone jump from a significant height and land on their feet. It's the same feeling I felt when I jumped from more than 4 feet or so and landed on my legs as a child on the playground. Not really a pain, but a sharp jolting sensation that ran from my feet up my legs. Decades later, it still happens when I am sitting still in a theater and I watch a character jump and land on their feet in a similar manner. It's a real sensation.

There is a mind-body connection and the mind can induce nervous system sensation when no physical cause is present.

Just so there is a dissenting reply about Sarno's book, I have chronic RSI and his book did not help me at all. I wish it did, I'm pretty over RSI in general, but after going through a variety of different ideas and experiments pretty much "don't use your hands" is all I've got :-(

Sarno’s book concludes with the idea that negative emotions cannot be changed, and I disagree. I _think_ this is due to the psychoanalysis framework he employs for his analysis.

For me, it didn’t help either, but guided me to search how I could change my emotions. A mix of yoga and meditation plus techniques from “Code to Joy” by George Pratt helped me chronic headaches.

Yoga helps you become more aware of your mind-body. Meditations practiced in Kundalini yoga can help you become more deeply aware of your mind, or trigger certain helpful ideas (they usually have a very specific intention). What was left for me was to change negative beliefs that were created throughout my life, and that I accomplished with Code to Joy (and some of their previous work, which is more focused in emotions rather than beliefs).

It's difficult to put forward the science behind Kundalini Yoga / meditation to audience stuck in modern scientific mindset. There's a huge literature in India for holistic living that encompasses from Ayurveda, yoga to tantra written over thousands of years based on direct experience and experiments. If you’re curious to know more you can start with The Wellness Sense https://www.amazon.com/Wellness-Sense-practical-emotional-Ay...

Give this a look: https://www.mijncarpaletunnel.nl/en/home I can't guarantee that it will work for you, but it helped me.

> that the pain is real, it's just caused by processes in your brain, not the rest of your body.

I was also helped by Dr Sarno's book, and for me the news that it was "all in my head" was encouraging.

I can control my mind[1], and if my mind is the source of the problem, it's a lot easier for me to fix it that if I required surgery or medicine.

[1] At least partially, the mind is a slippery thing too.

The more I learned the more terrifying that statement has become. The mind exerts incredible power of the body (and vice versa) and it's much harder to get rid of pain caused by a something in your brain than a cut or a broken leg.

Agree. This is kind of embarrasing as a grown up, an engineer and a soldier, but the brain can really prank some of us. (Edit: I guess it might be even worse as a doctor or nurse. My point is only that I consider myself a reasonable adult, not too easily scared.)

My brain used to have my body act up when I took a certain medication.

I was lucky: Once it got a little ahead of itself and my body started acting funny before I'd even taken the medication.

At that point I knew it was all in my head and never had any more problems with that medicine after that.

I tend to think that any disease that is diagnosed without a well understood mechanism and a physical marker is very commonly misdiagnosed. We may find out depression and CFS/ME are two flavors of the same thing, or we may one day prove they are distinct and that many diagnosed with depression have CFS/ME.

I think this applies to all the diseases that are diagnosed as a bucket of symptoms. For example headaches...someday when we understand the mechanisms behind migraines, cluster headaches, tension headaches, etc... we'll probably find that we drew the buckets in the wrong spot.

My personal experience with RSI is that it crippled me. My forearm muscles, for example, became rock hard. Not sure how that could be just my mind.

Fortunately, I found the underlying physical cause and am responding quickly to treatment.

Glad to hear Sarno helped you though :)

> I struggled with RSI for a couple of years until I read John Sarno's "The Mind-Body Connection" on the recommendation of someone from HN. Sarno's thesis is that many chronic pain conditions (those without a clear physical mechanism, such as RSI or chronic back pain) are psychosomatic.

I've had two RSI episodes in my life. The first one was similar to what you described and went away without any physical intervention, after I read something similar. The second (specifically, I had carpel tunnel syndrome symptoms) was more recently and didn't go away until I tried these: https://www.mijncarpaletunnel.nl/en/home They say to use them for 6 weeks. For about 4 weeks I didn't notice any change, but by the end of week 5 I was pain-free. They claim that you should remain pain-free for a couple of years after, which wasn't the case for me, I get some symptoms every so often (rarely pain, usually tingling fingers), but between using a Kinesis Advantage2 keyboard with foot pedals and taking regular breaks, its been manageable so far and hasn't caused any problems.

RSI from typing is typically caused by excessive wrist extension, though wrist pronation, ulnar deviation, etc. can also be bad. As can any other un-neutral body position held for a long time while working.

The way to prevent it is to type with a posture such that all of the joints of the arm/hand (not to mention neck, shoulders, etc.) are in a neutral position with as little static load as possible.

This can be accomplished more or less on a standard keyboard, but is much easier with a keyboard that has a split halves, tented. It is also helpful to type with a light, bouncy style, which can be helped by careful choice of keyswitches.

1) Is it worse in your mouse hand? Don't overlook the mouse.

2) Is the KA2 wide enough for your shoulders? A split keyboard was the ticket for me, due to the set of my shoulders.

I think a lot of RSI is related to holding tension in your body.

The more direct physical way to "fix" it is to adopt a neutral stance with your body. Let your arms hang down neutrally at your sides without using your shoulders to hold them up. Let your wrists be supported in a good position so the strings and pulleys from your forearms to your fingers function well. Support them off the sharp and low edges of the desk at a good temperature. Let your head be balanced over your neck and shoulders instead of holding it in position with your back and head muscles.

The way to exacerbate the problem is the power through it like a new runner with shitty shoes. Ignore all of it, hold tension in your neck and back and ignore the signals your body is sending. Keep your monitor off-axis. Use a shitty mouse and keyboard. Sit at a laptop for hours and get-er-done in spite of terrible ergonomics. (Do you know there are no OSHA approved laptops?)

The exacerbate case ignores your mind-body connection.

Now, it's not "all in your head" but your head is part of the problem.

Expect that as we speak, the actual biological cause are being discovered.

Just like it turns out 50%+ of fibromyalgia patients have actual neuropathies, that can unfortunately diagnosed by biopsy only, which is expensive - and it's oh so much cheaper and efficient to write off as a psychosomatic disease instead.

If anyone doubts the power of the mind-body effect, look up Nocebo effects (opposite of placebo) where the mind manufactures "real" symptoms as side effects to medication. I can't find the source(s) right now - but I have previously read about cases as extreme as blindness and paralysis with purely mind-induced and non-physical causes.

The harassment in general might be good and scientists would be compelled to think "how will general audience read and understand my research" question before writing "academia speak".

People are not in general evil, academia on other hand is a bit arrogant and engages in needless jargons and complications leading.

This is sad. Unfortunately we have some people who put their beliefs and politics above science and will actively act against investigation only because a line of inquiry could result in evidence against their view.

It comes from both the left and right depending on the topic. It’s not simply dissent it also is about pressuring institutions to not fund certain areas of investigation which is a very detrimental consequence.

I sure hope we grow out of this phase, or another society like China or Japan avoid this fate so studies can go on without interference [obviously they’ll have their own blinders but we can at least be complementary]

Unfortunately we have some people who put their beliefs and politics above science and will actively act against investigation only because a line of inquiry could result in evidence against their view.

You say that's people putting beliefs and politics above science, but while that's a rational thing to suggest there are two problems with it.

Firstly, a lot of issues don't and can't have any scientific rationale behind them. They're moral judgements. For example, if you want to go looking for scientific evidence for why the death penalty is a terrible idea you won't find any. You'll only find ethical and moral rhetoric about why killing innocent people by mistake is bad, or why the economics of keeping people in prison for decades when you could just kill them is irrational. Science has nothing to say. Science doesn't judge.

Secondly, people don't always believe evidence even if it's there. For example, if you take a random sample of teams and find the ones that make the best decisions are more diverse[1], some people will demand "positive discrimination" is a terrible idea and a meritocratic system must be better even in the face of the evidence or they'll just argue that the evidence is plain wrong. How do you persuade those people to change their minds?

[1] https://www.forbes.com/sites/eriklarson/2017/09/21/new-resea...

While there may be evidence that diversity leads to better decision making, this isn't it. It's a marketing piece for a company that sells a decision making co-working platform. Direct from the white paper:

"The study was able to measure when teams made better decisions by tracking how often the decision maker changed their mind based on the input of the team. This is presumed to be a better decision since the Cloverpop process ensures that decisions are well framed with clear goals, adequate information and multiple alternatives to avoid groupthink."

In other words, this study defines better decisions as ones which make their product relevant, which unless you're a Cloverpop marketing exec, probably isn't a good metric.

You know, I think science is a lot more capable of converting "is" into "ought" than it is commonly given credit for. I think there's room for a kind of "moral pragmatism". After all, our morals all came from somewhere - some type of reasoning drove their creation, be it conscious or evolutionary. There's a rock bottom, and science can expose contradictions between our core axiomatic beliefs, and our more shallow cached beliefs.

As an example, I'll run through a sample "scientifically pragmatic" argument against the death penalty: The death penalty is a terrible idea because it fails a cost benefit analysis. The benefit is a deterence to commit certain types crime, and a cost savings compared to life imprisonment. These are measurably small (research has shown that severity of a penalty has a nonlinear relationship with deterrent effect). The cost is the violation of a moral imperative not to kill. A society with the death penalty has made a conscious decision to compromise a moral imperative. This weakens the authority of moral imperatives, particularly the one against killing. The purpose of such moral imperatives is to promote a more civil, less violent society, because such societies enjoy an evolutionary advantage, hence their evolution in the first place.

How the argument proceeds from this point depends on core axioms - whether one values happiness or survival more, for instance. But the point is that it's possible to logically break down what appear to be moral questions into purely pragmatic ones, in service of deeper axioms.

The problem with this isn't that it's ineffective - it's that it's complicated, error prone, and relies heavily on a correct accounting of second-order effects and beyond. Science is hard - you need research and facts. Moral judgement is easy - you just say what pops into your head. As such, people mistrust the very idea that morals could be calculable, because it removes their agency. If someone has a strong, irrational feeling that Billy Murderer has it coming and should fry for what he did to those kids, my above argument (fleshed out properly to appeal to their core values, provided that's possible) will not convince them that it's a bad idea in the long run, no matter how scientific or testable it is. So they say things like "science has nothing to say". In fact, it does - we just don't want to listen.

> cost savings compared to life imprisonment

Minor nitpick: it's actually more expensive to execute someone than to imprison them for life, mostly because of the increased legal costs.

But isn’t that a cost that could be eliminated with efficiency. It seems the legal costs are a result of the moral differences of population segments.

If this different went away and everyone had the same morality, the legal costs would be really low.

Is that a Newtonian moral imperative, a quantum moral imperative, or a relativistic moral imperative? Science can help optimise toward a pre-existing ought (the moral imperative not to kill, for example) but it has nothing to say about what should be a moral imperative in the first place.

Well, the point was that moral imperatives don't materialize out of nowhere. The question of why humans feel this way is a scientific one, not a moral one. So you can evaluate it, and its effects, in the context of whatever broader goal you're trying to achieve, be it a space-faring civilization, a happy civilization, or even just a surviving one. Most moral imperatives are cached thoughts, subordinate to larger imperatives. Most people can probably be convinced to kill, for example, if they think it's justified.

I general support workplace diversity and mechanisms to promote it but you're making it sound like it's settled science based on some PR piece by a consulting firm promoting a a white paper that almost certainly wasn't rigorous enough to meet any reasonable standards - how do you properly control for confounding factors and how do you define "better" decision? That's miles away from being published in a peer-reviewed journal, which in isolation is also miles away from settled science. This is a microcosm of the political climate we're in - we're too eager to accept what we want to believe, while setting impossible standards for claims that we're disinclined to believe.

I dont really see your problem - and would counter with "we cant understand the world without data, but we also cant understand the world with data alone"[1]. With your firstly and secondly you are basically just making the normative-positive statement distinction: Sure, you cant prove normative statements, that's the point! But you can learn more about them with positive statements, which you can falsify, verify etc.

People not accepting evidence is kind of not really a problem of science, but of science communication. But yeah, its also becoming an increasingly severe problem with examples such as climate change denial and anit-vaxxers on the rise

[1] hans rosling - factfullness

I think Rosling would argue it differently. It's not a problem of "science communication", because there is no way to spin plain facts, hypotheses, and theory refinement in a way to make it automatically palatable to someone who doesn't want to believe it. (fwiw, I think Factfulness is the most valuable and important book I've read in at least a decade, and I recommend it to everyone.)

Rosling points out that smart, well-educated, well-meaning people who believe in science also see the world incorrectly - so incorrectly that they perform worse than random chance on multiple-choice questions. That's fascinating, and it suggests the problem is far more fundamental than "science communication". When facts are at odds with our instincts or cultural biases, we tend to choose the instincts and biases.

>people don't always believe evidence even if it's there.

I frankly admit some of the "facts" [0] known to me are wrong [1]. I know that for certain, as some of the "facts" are conflicting with each other, however that alone doesn't help with telling which is the wrong one, and which ones to base decisions & judgements off of. This causes various headaches; I end up resorting to fallible heuristics to try to sort out the good ones in time to make the necessary judgements and decisions. I actively try to gather more facts, hoping to improve decisive power in time.

However there's also a meta aspect: the trustworthiness of any given "fact" we learn. It's common to see people acting vigorously on information that's high impact but low trustworthiness. Another common sight is, as you say, people refusing to learn a new "fact "because it is in conflict with the other "facts" they already know, with little regard whether the new one is more trustworthy.

Somewhere along the road we fail, or maybe even refuse, to associate the "facts" we know with how much trust we can put in them. This is matter of handling and processing meta information, and frankly our current education and upbringing curricula don't seem to help much with it.

I hold it to be generally immoral to perform high impact acts based off of "facts" that are known with only low trustworthiness. And as you say science helps us with obtaining ever better set of facts.

[0] scare quotes to differentiate between information as it is known vs. idealized truthful facts

[1] either running counter to the idealized truthful facts, or imprecise enough to be misleading

Someone once told me that facts are political, that maybe we shouldn't evaluate all facts based on what's true but whether believing in them or not will create a better society and world to live in.

In many cases this will overlap, but in some it won't, and that means those facts that create a worse world if everyone believes them to be true should be considered as false no matter the actual truth.

My first feeling is that this might create severe trouble down the line at some point, but it might be less trouble than the alternative? An idea to ponder.

edit: The ideas in question touched worth of people, for example. We tie worth to things like earning power, intelligence and beauty. Changing how society views these things changes society. This is on the surface, but some aspects can go much deeper into who we are as a people, since we're storytellers.

>They're moral judgements.

The problem with moral judgements is that moral is not absolute. It always changes. That's why it's absurd to judge events happened 100 years ago by the current moral norms. In another 100 years there will be very different moral norms by which many of the things we're doing now will be considered absolutely amoral.

I see where you are going with your statement:

> Firstly, a lot of issues don't and can't have any scientific rationale behind them. They're moral judgements. For example, if you want to go looking for scientific evidence for why the death penalty is a terrible idea you won't find any. You'll only find ethical and moral rhetoric about why killing innocent people by mistake is bad, or why the economics of keeping people in prison for decades when you could just kill them is irrational. Science has nothing to say. Science doesn't judge.

I wanted to talk more about your example of the death penalty.

However, if you do look into the death penalty, you'll find:

- in places that lock people up for life instead of killing them, sometimes people are later proved to be innocent and then released.

- in places where the penalty is death, a jury that would've sent a person to life in prison will often choose to release the person instead of kill them, as they aren't 100% certain and the consequence is irreversible.

I think science absolutely has some things to say about this. You could take my two statements as hypotheses and do tests to see if they are true. (This would be a lot like medical tests, but it wouldn't be ethical to have a test group and a control group; you could, however, create a regression model between two similar societies (or the same one at different times) and control for various differences, the chiefest being 'uses death penalty' or not, and answer these questions ("prove"/"disprove" the hypotheses) with some confidence.)

I agree that while you could do a study to see if people are happier and economies fare better in societies with capital punishment ["science"], that the rational and the outcome have nothing to do with science. It is a lot like in the Ted talk "Teaching kids real math with computers"[0] where the speaker explains that math has four steps:

1. Posing the right questions

2. Real world -> math formulation

3. Computation

4. Math formulation -> real world verification

If step 3 was 'Do Science', then it becomes obvious that the other steps lie outside the domain of science, but it does not become obvious that we can't use the tools of science to reason about problems that people disagree on, including moral quandaries.

[0]: https://www.ted.com/talks/conrad_wolfram_teaching_kids_real_...

if you want to go looking for scientific evidence for why the death penalty is a terrible idea you won't find any.

The consensus among criminologists for decades has been that the death penalty is racist in application:

https://www.asc41.com/policies/policyPositions.html

https://www.asc41.com/policies/policypapers.html

if you take a random sample of teams and find the ones that make the best decisions are more diverse

The Forbes article that you cited doesn't include the term "best decisions". The term they use is "better business decisions". Business decisions often relate to optimizing products for the lowest common denominator among consumers in a particular market. In this context, the benefit of having a diverse team is unsurprising.

Do you know of any research of which the results indicate that diverse teams of mathematicians or physicists make better decisions?

In a capitalist society, I will see in a negative light any statement or action that negatively impacts my livelihood. I don’t care if the most vocal activists think that it’s “right” in an absolute sense to enact a policy of reverse discrimination. Anything that detracts from my ability to provide for my family is bullshit.

Just to clarify, you're saying that being on a team that isn't diverse and consequently makes provably worse decisions means you're likely to earn less than the amount you'd earn on a diverse team making better decisions, so you're absolutely in favor of maximizing your earnings by enforcing diversity through positive discrimination, right?

The studied that found diverse teams are more effective often some fishy methodology. In particular, one of the more widely circulated studies reaches their conclusion by making diverse and non-diverse teams plan a wedding using dances, rituals, and food from two or more culturs. A lot of these studies start with a conclusion determined a priori and the design an experiment to support it.

>In a capitalist society

Capitalism has nothing to do with it. Whether it's social security recipients or public school teachers, people whose income is determined by the government are as defensive of their livelihoods as people whose pay is set by market forces, perhaps even more so.

Capitalism has everything to do with it: a commercial entity fires people on a whim, whereas public school teachers basically cannot be fired. The NYC public school system is full of underperforming teachers who shouldn't be employed to begin with. Their pay and conditions of employment are determined via collective bargaining, so they're protected from any conceivable equivalent of a PIP or other "adverse action" by the employer.

Likewise, hiring practices in the private sector change like the weather.

As seen in the responses:

1. People love to nit-pick every single detail and shred of possibility that could be used to support their own beliefs and politics.

2. People who consider themselves to be the "Gold Standard" for whatever will believe themselves first and foremost.

3. People seek 'personal victories' for themselves by choosing to evince that they are right.

4. A reality that contradicts an ideality is unacceptable and dismissible.

5. Dualism can be used to create separatism.

I think this article is sad because it gives readers such as yourself such a misleading understanding of the issue.

The article implies it is 'scientists' vs 'activists'. Yet many more scientists have spoken out against the PACE trial than it its favour, eg: http://www.virology.ws/2018/08/13/trial-by-error-open-letter...

It implies that the 'activists' reject results for ideological reasons, rather than because the research being challenged includes verifiably false claims, statistical spin and poor methodology: https://journals.sagepub.com/doi/full/10.1177/13591053177223...

No mention is made of the fact that when an information tribunal had to examine claims about these researchers being harassed and abused their judgement stated that claims about activist behaviour had been "grossly exaggerated": https://www.centreforwelfarereform.org/news/major-breaktn-pa...

When data from the PACE trial was forced out by this legal process it showed that using the trials prespecified outcomes undermined key claims from the trial researchers: https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.12...

It is disappointing to see so many people seeming to uncritically accept a media smear campaign.

If you're interested in a decent analysis of this phenomenon in modern societies, I can recommend a recent book "The Death of Expertise" by Tom Nichols. The author also explores some ideas for how to counter this trend.

https://en.wikipedia.org/wiki/The_Death_of_Expertise

I agree, it's a very sad state of affairs. I wish we could make decisions off of facts and what makes sense. I know many people that are very blind when it comes seeing how they react to news from one political side or the other. For instance, let's say they align with the right, there could be very logical legislation being put forward and if you said it was proposed by the right they would say it's a great idea, but if you told them it was proposed by the left then they'd this is what's wrong with the country, it's the stupidest idea, and go on and on.

There's too many blind activist on both sides that drown out the middle. This causes the people in the middle to start to separate and choose sides because they see the crazies on one side or they other and think that party is retarded, which increases the divide. We're in a heavy downward spiral at this point and I don't foresee it getting better unless we take radical action, such as not allowing people with no science background to make decisions on matters that should be based on fact. Unfortunately this will never happen because the (USA) political system is entrenched with paid actors.

Sorry for the rant and taking a veer from topic. Lots of built up frustration about all this stuff.

This is a problem about the propaganda architecture we have all around us, especially online but not only, which favors simplistic, cleaving and aggressive ideas and discourages critical thinking. These "people on both sides" are mere consequences. And there aren't two sides. See https://news.ycombinator.com/item?id=19378688.

You are blindly falling into a trap, just like this whole article. The article is using the so-called "online activists" to dismiss political opinion (not some, really the abstract idea of having social ideals) and once again depict science as an intrinsically unbiased source of knowledge (which is usually even extend to unbiased source of social order, cf the recurring mathematical "justification" of the liberal economy).

Don't get me wrong, i'm a scientist myself (theoretical cs) and i do believe in the value of scientific method. But i do believe that (1) this problem here is about the "online" part, not "activist" and (2) every scientific field gets explored in the context of a society thus its choice, its means and its dominant approach will always be biased (which most of the time isn't any "bad", it's ok french cs community leans towards ocaml/coq but uk is more towards haskell/agda). To expand on (1), it is now long known that twitter and other ad-based plateforms favor stupid/bigot/simplified/aggressive interactions because that's what captures more attention.

So please stop mistaking social-media activism for normal activism and using this to simplistically and superficially discredit non-dominant political opinions (and push dominant propaganda forward like "left and right all extremes are same", everybody even the dominant liberals are stupid and angry on twitter, this is all irrelevant). So i don't know about this chronic fatigue whatever thing, but this argumentative trap comes up over and over, i'm kinda tired, so please folks when someone is talking about "<x> is doing <bad thing> online", the problem most likely isn't with <x> but with "online" because it most likely means "attention hijacking plateform based on control and manipulation".

I didn't read it like that at all. The article was very specifically about online toxicity, not activism.

And you responded loudly and angrily online, through the lens of your own biases. See how it works?

Sure about my tone, maybe it wasn't the best to convey my analysis, but that's how i have fun during my lunch break, and i prefer high variance comments. Joke aside, sure it was specifically about online toxicity, but it didn't mention anything about why this kind of harassment keeps happening more and more on specifically these online media. Also they put the focus on the confrontation between two sets of people, the scientists on one side and the religiously activists on the other. Honestly this is a reuters report, it's a serious newspaper so the reason of this omission (of something well known) isn't just "they forgot", there is meaning to it. They might not have done it consciously or anything, but the fact is that their behavior is exactly the same as the dominant behavior in face of fake news: confront the people that wrote it, not the people that designed (and get money off of) the tools that shaped/spread it. I argue this is a face of the dominant thought which must be recognized for it's non-rationality and bias towards control structures.

>So please stop mistaking social-media activism for normal activism and using this to simplistically and superficially discredit non-dominant political opinions (and push dominant propaganda forward like "left and right all extremes are same"

We should care who is dominant or who wants to be “right”. We should care to cultivate scientific consensus. Misinformed or incomplete science bound by some legal principles cannot be worse than “we feel this is the right and moral thing to do”. They can both be right or wrong and I don’t see why we’d have a preference for the one having less data to back it up. Again, all bound by some legal principles (data says sick people cost too much, herd them like cattle and drive down costs).

I think you misunderstood my point. I wasn't talking about non-dominant scientific opinion (which is probably because it isn't yet really clear, even tho this too is a slippery slope and "scientific consensus" can be easily (said to be) "broken" by the power of money, cf climate change, cigarettes not long ago, cocaine, opioids...). I was talking about non-dominant political opinions like abolishing private property or much less revolutionary getting back budget sovereignty in european countries, regulating the financial sector etc. (but also things like discrimination based on biological criteria, coercive birth control, military government and other, for "far-right/authoritarian"). Like another comment said, science may have some insight on these propositions, but ultimately none can be completely dismissed by scientific method only. So my point was that dominant thought (eg techno-scientifico-liberal) was trying to assert the opposite, posing science and reason as the ultimate mean of organizing society. And in the process conflating far-left's "not only science please" with far-right's "only science we like please" (and also funnily focusing the debate between the two so that the actual dominant position remains apparently moderate and impossible to attack because unnamed). ... got a bit carried away

I guess we need to be sensible. Of course both will promote the method which gives them the best face when posing an argument. A technobureaucracy is not what we want, but we also don’t want things rules on the basis of pure democracy (populism), nor good intentions (many communists/marxists had good intentions).

I'm not seeing anybody else suggest what seems to me to be the obvious solution: opt out of twitter (which seems like a self-abuse platform) and filter your email.

Part of why communication works is because we can't hear everybody's opinion on everything. People earn the right to our ear through networking and earning our company. Twitter undoing this is not progress.

When people call your place of business and complain to your boss about your methods and mental state, when they lobby the government to open investigations into your research under the accusation of child abuse, and when they use every available method to discredit your life's work, I don't think that simply opting-out of Twitter is likely to make a meaningful difference unfortunately.

Seems like scientists at that point have little choice but to bring legal action against those activists for slander. Unfortunately, and apropos of your point, most scientists likely won't be that aggressive in their action and I think the activists know it.

I don’t think slander charges would work here unless the activists are lying about the scientists. Are there anti-harassment laws that could come into play? Much of the harassment probably crosses jurisdiction boarders, so it may be difficult to bring charges in many cases.

> little choice but to bring legal action

Huh? A legal campaign would severely escalate the problem, cost time and money, and prevent the scientists from doing their work.

Besides, the international aspect of the issue:

"TARGET: Oxford University professor Michael Sharpe"

"INVESTIGATOR: David Tuller at his home in San Francisco": he blogs, sends hundreds of letters and emails, and travels the world giving speeches and holding meetings as supporters send him donations and praise for his CFS/ME campaign.

Imagine how f-ing annoying any city would be if everyone in the streets had a megaphone. Instead of a conspiracist standing on a box and shouting from a corner, now they can echo through the streets and draw other like-minded conspiracists together into a mob. That's what Twitter (and other social media) has allowed.

There's such little thought put into actions because action is immediate and satisfaction is self-served. A group dedicated to seeking action will always find something to nit-pick over to add fuel to the fire. If the desire is bad enough, emotion will surpass logic, which is like an addiction.

When people favor their actions over thinking, and neglect consequences, they will do things that make no sense or do more harm than good. But I suppose as long as someone gets their way, none of that matters to them.

Defamation law exists for a reason. Or harassment law.

What are they going to call and complain about if you don't have a social media account for them to dig through?

If you didn’t read the article, these activists are digging through research papers, finding the researchers’ contact info, and harassing them directly. On Twitter when they are on Twitter, but also on the phone and through the mail, and via their employers. This has nothing to do with whether or not the researchers themselves are on Twitter. The mob that’s harassing them uses social media to organize and recruit.

I did read the article. I guess I should have phrased it differently. The employers of these researchers already know what they're researching. They understood the risks involved so what would it matter if somebody calls in?

If the researcher removes themselves from social media they're insulated from the outrage in multiple layers. They don't see it, and they're not leaving any of their personal actions behind to be complained about.

I think the idea is that these scientists are publishing their findings which are getting translated (poorly, more often than not) by the media outlets and thus its trivial for the activists to locate where the scientists live and work.

> opt out of twitter (which seems like a self-abuse platform) and filter your email.

Putting on blinders doesn't always work. As it turns out, I was involved in an incident on LambdaMOO many years ago that rather famously illustrates the point. Both Sherry Turkle and Amy Bruckman wrote about it IIRC.

Basically I'd gotten tired of one person's nonsense, so I "gagged" them. They knew I couldn't hear them, so they'd follow me into a public "room" within that virtual environment and talk to me. They knew I couldn't "hear" them but everyone else could. My lack of a response to them, though I was active in the more general conversation, was interpreted as either assent or cowardice. Including when the person started accusing me of being a child molester. I eventually became aware of the shenanigans through others' reactions, but it was still an ugly situation. Refusing to hear what others had to say about me was not a solution.

You know what they say: for every problem there's a solution that is simple, obvious, and WRONG. "You just need to..." is almost as bad as "actually..." in conversations among techies.

These activists will find your place of employment and take it up with them. You can ignore Twitter but they will find you.

Sure, but that's been going on forever. There's a difference between activists that are motivated enough to show up at your workplace, and those who are willing to daylights out of you.

I think that you're misunderstanding your parent, who is not, to my reading, saying that people will show up at your work and beat you up or yell at you, but rather that they will campaign to get you fired.

For example, Scott Alexander of Slate Star Codex mentioned in a recent post that people had called his employer and tried to get him fired because of the comments of people on his blog and the subreddit associated with it. (And he blogs pseudonymously, for whatever it's worth).

Another reason communication works is mutability. Personal and popular opinion changes over time. We're (and especially young people) not adapted to have everything we say or do kept on record for eternity. We've done a good job of messing that up too.

Then the question becomes whether or not research underwriters are letting these tweets affect research funding. Hopefully they aren't.

Very much this. The reason why we're all so overwhelmed by the online and media vitriol is those platforms have the ability to push the negative content straight to us. And they do so because they know it'll get our attention.

So... the answer, for me at least, is to turn them off. I deleted my Facebook and Twitter accounts. I don't watch, read, or listen to news.

"How then do you stay informed?" you may be asking. Well, I didn't delete my family or friends and they will often bring up topics that are of interest to me. It's about to snow a lot where I live. I heard about it first from my friends and then made the conscious decision to read more about it online so I could know and be prepared.

Sure, I also get the occasional bullshit political vitriol but they're quickly realizing how ineffective that is with me because I either unceremoniously change the subject or walk away from them when they start that nonsense.

I can understand why so many chronic fatigue patients are reacting this way. My doctor once told me that during his medical training, he was taught that people claiming to be suffering from this are bonkers and must be treated as if they are psychotic.

Nowadays, the evidence is stacking up that there are metabolic, viral, and neurological factors involved, and while all of these can effect alertness, they are not ever dealt with via willpower.

The patients who have been royally insulted are the ones likely reacting this way. Whether or not the physician or scientist on the receiving end is deserving of the ridicule is case specific.

What percentage of patients are bonkers? What percentage would benefit from psychiatric treatments rather than non-psychiatric?

It’s really hard with some conditions to get a good diagnosis and course of treatment?

Being called bonkers doesn’t mean it’s a good idea to act bonkers (tweetharras someone).

It’s kind of like that narcissism test where narcissists just respond that they are.

I think non-bonkers people should be able to work around the frustration of being considered bonkers by a polite and civil doctor. It’s a real pain to navigate the health system and I think terrible things happen because of it, I fear there are deaths because it’s so hard to see healthcare workers and get useful outcomes.

So being “royally insulted” is pretty typical. Trying to shut down a researcher’s life work means there’s something wrong with the insulted, not the insulter.

Watch this to understand the problem better : https://www.unrest.film/

And this : https://www.ted.com/talks/jen_brea_what_happens_when_you_hav...

I study neurology and metabolism. If any of these patients are delusional, its an exceedingly small fraction of them. Same goes for people diagnosed with "conversion disorder", which is the idea that they are exhausted because they are dealing with some buried repressed childhood trauma.

Some psychiatrists can have a real discussion with you about the intricacies of the hypothalamus. Others ..... really not..... they will try and deal with your systemic inflammatory problems with Fruedian psychoanalysis. Worse yet is that many patients dealing with these deep fatigue and metabolism issues have been institutionalized because people think they are just faking it.

> Yet some patients and their advocates say this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic, a notion that enrages them. They would prefer that research efforts focus on identifying a biological cause or diagnosis.

The underlying stance (i.e. "psychosomatic and mental illness are no real illnesses") is so utterly moronic I am surprised they even found the tweet button.

> psychosomatic and mental illness are no real illnesses

This is what people are told by medical professionals who are refusing to help them.

I'm not sure I'm following, so I want to make sure I've got this right. You are claiming that there are medical professionals are telling their patients that psychosomatic and mental illnesses are not real illnesses?

There are certainly people going to their doctors complaining of various sorts of chronic pain and/or tiredness, who may be given some tests and test negative, who are then told "it's all in your head" and not offered further treatment.

(It's bad enough with physical-but-hard-to-diagnose problems like endometriosis; I know someone who's only just got a diagnosis after several years.)

The level of treatment you receive and how seriously you are taken will depend on which country you're in, how good your insurance is (where applicable), and how you appear to the doctors.

It also depends on whether the healthcare worker is able to help or knows of any treatment.

Sometimes a healthcare worker’s treatment options are honestly exhausted. “Mental illness or psychosomatic” doesn’t mean the patient isn’t suffering, it just means that doc has no idea what to do and that others should be consulted.

It doesn’t it stop the condition from being a mental illness.

No so much that they are not real issues, but that the doctors don't know of anything they can do to alleviate it. Drugs only work as far as the placebo effects work, and have the danger of being potentially addictive on the side. Counseling doesn't work if the person thinks you're bullshitting them just to deny them their pills.

They are receiving help - it just isn't the kind they want. (To be fair it may or may not work in their case but they acknowledge it - regardless of assumptions and their correctness.)

In some cases it's a fairly clear "you're making this up, go away."

Twitter is incentivized to make the tweet button easy to reach, because outrage (aka: engagement) gets people to look at ads. It's hard to even look at the failure of the education system for so many. It's sickening.

Another field where science is on a collision course with online (and offline) activists is genetics. As we decode and understand more of the genome, it is possible that our genes affect more of our behavior than what the partisans of tabula rasa hold for truth. And unless the political climate evolves, in a power struggle between activists and science, I wouldn't bet on the scientists.

"behavioural genetics" and something else I will not even talk about for fear of being hunted and bullied by an angry mob on the internet. These topics are so sensitive because of the current political climate that they are literally career suicide for any western scientist.

It has become way too easy to bully people into submission with tools such as Twitter, but not only, too easy to create harassment brigades against anybody over manufactured outrage.

Do you have evidence of your claim that "These topics are so sensitive because of the current political climate that they are literally career suicide for any western scientist."? For example, an investigative piece similar to the one here, except about behavioral genetics?

See anyone who has touched "differences of iq between races".

Natural selection acts to increase the fitness of a species relative to its environment. In the human case 'race' is a misnomer. It simply refers to certain features of humans' external appearance, namely melanin. But this does not track any distinct genetic community, which primarily changes as a function of the total sum of environmental pressures, and not just in proportion to UV radiation (i.e. as is true of melanin). It is difficult to take anyone seriously who uses race as a meaningful biological category.

IQ is a terrible example. It can be trained, with some examples of increases of up to 30 points. It regresses to the mean. Correlation between IQ of parents and children is lower at birth and increases up until around 18 (Wilson Effect). At younger influences it is strongly influenced by your environment. And not too long ago it was found that all the genes associated with IQ were false positives.

The conflict here is one side thinks this is some kind of political correctness scheme when in reality, IQ and race are just terribly unscientific social constructs.

You'll get much less push back from something like "genetic marker found to influence spatial thinking in young children.

What, genetically, is a race?

There is this weird phenomena which can been from the replies to this comment. I can easily tell someone’s race by looking at them and I can make rough rankings of people’s intelligence after knowing them for a while.

But the scientist insists that I can’t. Instead they tell me that race doesn’t exist and “what is intelligence anyways?”

These are distractions.

If you say the wrong-think loud enough, Twitter will be the least of your worries. When the credit card companies and banks start refusing to do business with you, you're completely lost in modern society. This has already happened for some people.

could you point to some documentation on this please?

I know almost NOTHING about the people mentioned below. They're just names that I happened to catch in the news about their accounts being closed or they came up in a google search I just did. I'm certainly not implying support for them or their ideas.

Some comic creator https://boundingintocomics.com/2019/02/21/chase-bank-shuts-d...

Some Proud Boys leader https://bigleaguepolitics.com/chase-bank-shuts-down-proud-bo...

In his most recent appearance on Joe Rogan, Alex Jones reported that he had an excellent credit rating and had several of his accounts closed. This is a statement of fact that, if untrue, the banks could sue for defamation. So it's likely true.

Paypal (bankish) has gone after "hate groups" https://www.foxnews.com/tech/conservatives-call-for-paypal-b...

Mastercard banned Robert Spencer (white supremacist) https://www.jihadwatch.org/2018/08/patreon-and-mastercard-ba...

I've done a lot of human behavioral genetics research and think there's not a lot more to say about big-picture questions regarding the genome and behavior (people can ignore what's been said but that's a different issue). Genes influence behavior, and so does environment. Both in big ways, and there's extremely complicated dynamic interactions between those systems. There can be big genetic insults to a behavioral system, and big environmental ones. Behavior is often measured crudely, especially in behavioral genetic studies, due to practical constraints, so distinctions that people here might care about don't get made in such studies often. There are a ton of details to flesh out, but I don't think people are going to find genes influence our behavior more than what's been documented. It's just not supported by the evidence -- and people have looked.

Also, even beyond behavior genetics, as neuroscience and genetics research progresses even further, we're going to have to face a bigger question, which is what to do about the fact we can actually intervene to influence behavior even in the face of congenital attributes. Let's say trait X is 80% heritable (they're often not, more like 50%), but you can use CRISPR-esque techniques with viruses, etc., whatever, to change the genome at any age. Think about the ethical and political issues surrounding that. When you can play God, you have the responsibilities of God too; there will be no excuses for altruistic intervention by society.

I'm happy about this article because I've also done research on psychosomatic issues, for lack of a better way of putting it, and this field is really mischaracterized and there is a lot of mob behavior against scientists.

Behavioral genetics is perfectly safe - if they deal with actual genes instead of the utterly unscientific proxies of race that have been long discredited.

There has been no public stir over say ADHD or psychiatric prevalence, hell theories in either direction for "gay genes" failed to move the needle. The Warrior gene" research (https://en.m.wikipedia.org/wiki/Monoamine_oxidase_A) didn't despite a crime link and the double Y males link to violence wasn't controversial even though it was later shown to not be endocrinal but IQ related from the condition leading to their overrepresentation.

> utterly unscientific proxies of race

I cannot but laugh every time someone mentions this.

It's very simple: can you measure it? (Yes.) Is the measurement persistent? (Yes.) Then it doesn't really matter whether it's "scientific" or "unscientific" or "mezo-scientific" or whatever, it's a valid concept.

Then people say that it's "socially defined" (yeah, all words/concepts are) or that categories are not clearly separated (e.g. mixed race people), but then again, same goes for the concepts of "day" and "night". Now, are you going to claim that "day" and "night" are unscientific?

Yeah but part of good scientific practice is to isolate the variables as much as possible with the control groups. One can work with less controlled variables but it increases noise generally and should be avoided as it is more likely to produce entanglements that fool even the most honest of scientists. The data tends to be noisy and messy when it involves free human populations in even harder sciences with tight qualitatives.

Before blood-typing trying to go with an ethnic system is fair enough as a guess and could potentially be a slightly better match rate (more likely to have similar blood types - especially in more homogeneous populations). There are better tools and groupings now so it raises the question 'why bother with a rough proxy when there are more precise alternatives'?

If looking at just light level one doesn't just go with 'night' or 'day' for light levels when specific times for measurements are possible, controlled temperature and calibrated light controlled rooms would specifically testing for a /different/ aspect and even then the point is to try to figure out what is the missing aspect from the more controlled simulation.

Sickle cell anemia may be found more in those of more immediate African descent but taking prevalence of oxygen carried by whole population and concluding African blood carries less oxygen because some have sickle cell anemia is unscientific. One should be grouping by what is actually germane - characteristics of the blood itself and how it is capable of holding more or less oxygen. Not the pigmentation of the sources.

If people are interested in exploring this topic, I would highly recommend Robert Sapolsky's course "Human Behavioral Biology" from stanford. The lectures are all available on YouTube and I learned so much from them:

https://www.youtube.com/watch?v=NNnIGh9g6fA&list=PL848F2368C...

I can second that recommendation, I'm watching that lecture series for the second time it's so great.

> As we decode and understand more of the genome, it is possible that our genes affect more of our behavior than what the partisans of the tabula rasa hold for truth

What “partisans of the tabula rasa”? Activists of both the left and right seem more likely to be partisans of genetic determinism, though of which aspects of intellect, identity, and behavior varies between them.

I think the left is considerably less comfortable with many aspects of genetic determinism, and I say that as someone who is pretty far left on many issues (at least by US standards).

For example, if stereotypical male/female attitudes and behaviors were found to have a substantial genetic component to them, I think a lot of socially progressive people would hate that. There's a lot of emotional investment for many in the idea that stereotypically gendered behaviors are entirely or almost entirely caused by culture/social pressure.

> For example, if stereotypical male/female attitudes and behaviors were found to have a substantial genetic component to them, I think a lot of socially progressive people would hate that.

I...disagree. I think you would find that most of the left takes as an article of faith (or, at least, a very strongly held belief) that gender identity and presentation (which necessarily includes stereotype-conforming as well as nonconforming identities and presentations) are very strongly genetically determined and that extreme distress results when people attempt (or are compelled) to mask what is genetically-determined in this area, and that that is fundamental to the belief that nonconforming identities and presentations should be accepted.

> There's a lot of emotional investment for many in the idea that stereotypically gendered behaviors are entirely or almost entirely caused by culture/social pressure.

There's a lot of emotional investment in the idea that the concept that there is a single acceptable relationship between external genitalia, gender identity, and gender presentation is a social construct, as well as in the necessary corollary that the particular relationship chosen in any particular culture that imposes such a single acceptable relationship is also a social construct. But that's intimately tied to the idea that each of those three things, while they may have some non-genetic contribution, is fairly strongly genetically directed, and while there may be some correlation between the genetic determinants of each, there is considerable individual variation, as well.

Well a lot of our policies are based on the tabula rasa theory. Gender or racial imbalances between professions for instance are attributed to cultural bias and discrimination. It may be the case, I think only science will provide a definitive answer. And you are right, far right activists do assume full genetic determinism and they may also be proven wrong by advances in genetics. But they are kind of a smaller marginal group, whereas partisans of the tabula rasa are pretty powerful, particularly in academics.

Or to restate, equality of opportunity and equality of... "ability" (in the sense of Phelps-ian genetic uniqueness) get conflated. As though admitting the latter differs somehow effects the righteousness of the former as a goal.

Agree that genetics v activism is going to get very ugly here.

We're already seeing it in health insurance: that's the essence of the pre-existing condition debate.

Should people bear the cost or accrue the benefit of their uniqueness, or should we share them as a community?

> Well a lot of our policies are based on the tabula rasa theory.

I don't think very many policies actually are.

> Gender or racial imbalances between professions for instance are attributed to cultural bias and discrimination.

That's not based on tabula rasa theory, that's based on actual experience of (often, until quite recently, overt and direct) gender and racial discrimination. It certainly tends to involve a belief that certain traits (whether or not genetically determined) are not intrinsically associated with gender or race (or, sometimes, when there is evidence that such an association does exist, that the association is not strong enough to explain the outcome difference.) But that's very different from, and entirely neutral toward, the question of tabula rasa vs. genetic determinism.

> partisans of the tabula rasa are pretty powerful, particularly in academics.

The closest thing I can see to "partisans of the tabula rasa" in the real world, with any kind of power, are religious conservatives, who have a very strong incentive to believe that things for which there is already very strong evidence are genetically determined are choices, so as to ascribe moral virtue to certain traits and moral vice to others. But plenty of them have over time adopted a model of accepting genetic predisposition in (at least some of) those areas while still finding a moral command to act in a certain way regardless of predisposition, so even with them I don't see things quite so irreconcilable as the upthread characterization.

With sincere respect, I think you’re understating the power and prevalence differential across the political spectrum. :) There are a handful of far right “activists” who believe in genetic determinism and they are rightly marginalized and have no platform whatsoever. Left wing proponents of blank slatism are mainstream, particularly in the (often publicly funded) “grievance studies” fields, and they have a significant cheering section comprised of journalists at leading media institutions (Guardian, NYT, etc), corporate diversity consultancies, and elsewhere. Not only are there far more proponents on the left; they enjoy enormous platforms and public coin.

Climate-change denialism is a more bipartisan problem than this. :)

There are huge proponents of tabula rasa. Consider, fore example, I do research and realize trait X correlates with IQ.

Also suppose trait X is highly visible so that I can easily identify who has it (just for concreteness, let's say it's black eyebrows, and 20 IQ points). This would drive the internet batty.

The same is true if any such correlations are found for a number of other traits.

Isn't that already in effect for height, a nearly purely genetic attribute that has been correlated with multiple traits such as IQ? Beside stupid manlet jokes, it seems no one really cares for or against such a correlation existing.

The purpose of your circumlocution is to remain ambiguous enough to fall back to a less controversial position when called out. Just say what mean, which is that skin colour correlates with IQ.

I hate it when your ilk make race vs IQ seem like an edgy new opinion that is being suppressed. It used to be mainstream globally, but we moved past that through dialectics. When the "bell curve" book was published, we resurrected the debate, then we moved passed it.

It seems to me that you have to go out of your way to bring up race and IQ. That's why, whenever the debate is brought up, one of the parties is accused of having an agenda.

What you point out isn't (even we accept its true as described, which I will disagree with in a minute) about people being proponents of tabula rasa: the problem they have is not with the idea that either X or IQ have strong genetic determinants, but with the conclusion that they are correlated.

And, actually, I would argue that in the real world, the correlation isn't even the thing that's problematic, its when the correlation is used as a basis for accepting discrimination on the basis of X. No one is upset about the widely known height/IQ correlation, but that's because no one is using it to justify discriminating based on height, because it is an easily-visible proxy for IQ.

> both the left and right ... partisans of genetic determinism, though of which aspects ... varies

I agree, but that's enough. In any one area, scientific fact will run into serious opposition. In a different area, the opposition may come from other people, but be just as strong.

If anything, this will make it harder to defeat, than it would be if "partisans of the tabula rasa" were a neatly circumscribed group.

Steven Pinker wrote a book literally titled "The Blank Slate: The Modern Denial of Human Nature," in which he makes a case against tabula rasa models in the social sciences, arguing that human behavior is substantially shaped by evolutionary psychological adaptations.

https://en.wikipedia.org/wiki/The_Blank_Slate

it's funny, they only seem to accept those aspects that suit their ideology...

I remember a famous French geneticist telling something along these lines about "nature vs nurture", or the influence of genes on behaviour, intelligence, etc: "debating on the greater importance of genes vs nurture is like asking of a winning motorcycle racer what's most important to win the race, the bike or the pilot. In any case, you know that neither the bike alone, nor the pilot alone would win".

> And unless the political climate evolves, in a power struggle between activists and science

In the long run the truth wins out because generally it has an advantage -- it knows what works and what doesnt.

I don't think our society is ready for it, much like we aren't ready for human gene editing. It's gonna result in some unfortunate outcomes.

As someone in molecular biology, genetic engineering is grossly overblown by the public, no thanks to the recent news story out of china. No one wants to edit the germline in humans (aside from the discredited researcher). People want to edit the germline in mice, work out the mechanism of action of a given genetic variant, and develop a drug.

It’s a far safer proposition for someone with a known genetic illness to just be put on medication for their entire life than something so permanent and not guarenteed as attempting to edit their parents germ cells. If your medication is bad for the patient you can just get them off of it. You can’t do too much if your CRISPR system goes off target (which is known to happen).

This is also happening with research on detransition -

>Bath Spa University is conducting an internal inquiry into claims that it turned down an application for research on gender reassignment reversal because it was “potentially politically incorrect” and would attract criticism on social media.

https://www.theguardian.com/education/2017/sep/25/bath-spa-u...

I find this so problematic. There are a number of psychologists who are being pushed heavily by social and transrights groups to always suggest transitioning as an option. This goes against one of those classic staples of what we teach people growing up: "You need to be okay with who you are."

Helping someone be okay with their own gender shouldn't be an ethically questionable treatment to offer. After all there are risk from hormone replacement therapy. Transitioning can also be an option for adults, but I feel as if it's pushed too heavily for adolescence today. These are reasonable questions, but they're often met by activists as being "anti-trans."

In a way, it's another example of what the article describes; the bullying against psychologists from giving their actual views and opinions. There are two really excellent Wrongspeak podcast episodes dedicated to this:

https://soundcloud.com/wrongspeak/3-too-young-to-transition

https://soundcloud.com/wrongspeak/8-gender-dysphoria-101-wit...

Activists successfully shut down the Child Youth and Family Gender Identity Clinic (GIC), in Toronto run by Dr. Kenneth Zucker, formerly one of the leading researchers on trans health, who led the team that wrote the DSM-5 criteria for gender dysphoria.

These activists claimed that his clinic was using "conversion therapy". Instead of following the gender affirmative approach, this clinic instead had child patients work through their dysphoria with therapy and explore their gender with play. His research found that 80% of children with gender dysphoria usually end up desisting and leading healthy lives, which directly contradicts the narrative that children who are gender non conforming need to get on dangerous puberty blockers. https://www.thecut.com/2016/02/fight-over-trans-kids-got-a-r...

I don't see the problem here; if something is going to bring so much flak, it's prudent for an organization to avoid the situation altogether, even if society at large may be losing out.

I do think, however, that when decisions like this are made, it should be publicized so everyone can know what we're missing out on and why. Moreover, when online activists do ruin stuff like in the original article here, there should be a public record, so that concerned people can see "well, there were these scientists trying to investigate CFS, but they were abused by all these online activists (with all available information about these activists publicly posted), and so they left the field and no one's bothering to research it any more."

If you think it's bad now, wait until "activists" have easy access to AI that most people can't distinguish from real humans.

It's simple: Just pick a target of your ire, be it someone with ideological, political, lifestyle differences, or just someone you don't like, point your AI bot to it, and watch it harass your victim and anyone associated with them, until they lose their job, reputation, friends, family, etc. Bots never get bored, never forget to keep the pressure going. They continue, relentless, until their target is destroyed, even if you've forgotten and moved on.

It'll start out as character-assassination-for-hire, but eventually the source will leak, and then all hell will break loose.

It's a bully's paradise.

That already happens, but instead of bots, it's dumb people with a political agenda doing the harassing, and they even do it with their own resources, you don't have to pay for bot servers.

Yes, we tend to underestimate just how much energy, time, and money people are willing to contribute to harassing someone whose ideas they disagree with. Many times I find myself wanting to debate something online but the consequences of accidentally stepping on someone's toes who is willing to dedicate their life to destroying mine makes it just not worth the risk.

So like Amazon Mechanical Turk but free?

> If you think it's bad now, wait until "activists" have easy access to AI that most people can't distinguish from real humans.

I'd bet you could experience this right now if you start researching and posting on topics like "Free Tibet" and the current geopolitical situation in Ukraine.

Edit: possibly with a paid human instead of an AI, but with a nation-state budget it's equivalent.

The only reason why the Internet Research Agency and similar propaganda machines are staffed with people and not a well designed AI is that people are far cheaper and more flexible in what they can do. Training and retraining an AI takes time and a large dataset which takes time to build, and time is money.

then it seems finally time for humanity to buck-up and grow a thick skin :D people let others get to them. they let them... people get offended and demotivated by anything, while it's in their own hands to keep their spirits up.

My doctor[1] says the PACE trial was very flawed in methodology and interpretation of results, and set back research significantly because it was seen to show "it's all in your head" (if I understand correctly), thus discouraging research into physical causes. She also says the only known effective treatment is to learn good pacing: careful budgeting of one's energy expense.

But regardless of whether we agree medically or otherwise, we should treat each other with courtesy.

[1] An internist who participates in and coordinates significant research, she specialized in CFS and fibromyalgia after her (late) sister had CFS. They have quite an organization with resources for doctors, patients, and families: http://batemanhornecenter.org/ . Over time I have gained a high opinion of her and the organization.

EDIT: clarification in 1st paragraph.

The trouble with the PACE study isn't just its flaws, but also how the researchers responded to anyone that challenged it.

For example, in order to get meaningful results from a trial like this you need to choose your definition of success before the trial starts. The plans for the PACE study did have such a definition, and while it wasn't great it also wasn't terrible. The final study didn't use it; it used a new and much weaker definition. So far this is all sadly pretty commonplace.

Then the patients involved in the study got wind of this and tried to find out what the results were if they used the original, planned methodology. According to the researchers, this was a dangerous and vexatious attack on science by activists - and because they were respectable scientific figures working for major institutions, and the people questioning their research were mostly disabled women who were, according to the mainstream consensus, nuts, people believed them.

This article is basically a direct extension of this tactic, and it's working. I can already see a few folks elsewhere in the comments calling on universities to sack the few scientists who questioned this...

What about the empirical evidence of thousands of patients who have had success with these therapies? Is it possible their experience shows it's not as simple as declaring PACE completely proves or disproves the psycho/somatic vector?

There's thought to be a natural rate of recovery of around 5%, so there will be many people who recovered while co-incidentally doing all manner of things, CBT, GET, homeopathy, etc. There's no good evidence that CBT or GET help people recover. Even relying on just subjective self-report questionnaires prone to problems with bias, the PACE trial's prespecified recovery criteria showed that there was no significant improvement in recovery rates when CBT and GET were added to patients' medical care: https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.12...

This is the problem when a society manufactures self-proclaimed experts on everything that do no actual research or scientific studies in the field they discuss. It's one of the many vices of the Internet.

GRRM (game of thrones author) summarized this in an apt way, that I think applies to this case perfectly:

*(badly paraphrased) Before the internet, people (including grrm) sometime wrote fan letters. There was always an occasional hater, but mostly, people wrote letter to authors they liked. They generally didn't write to say they hated a book, or that they liked the first three but the last two were shite.

Here is a simple rule.

Any condition that can be improved with a placebo, has a possible psychological component that can either be a cause or a contributing factor. This is not to say that it is all in your head, or that all people with it have it due to psychological reasons. But some of the people have at least some of their symptoms worsened by psychological factors.

Anyone who finds this controversial has psychological issues with reality. And this is true whether your condition is CFS or high blood pressure+heart disease.

Now people don't want to believe that acupuncture is a placebo, but there is ample evidence that it is. Therefore this applies to every condition that people find that acupuncture can help for. And that is a lot.

It’s way more complicated than that. The diagnostic criteria changes over time, for many diseases with psychological components, in ways that make formerly pathological behaviors now healthy and vice versa.

Placebo doesn’t actually help you, obviously, despite what the outcome you’re measuring suggests. It represents a slack (something not quite an error, but not quite a useful measurement) in the outcomes based measurement regime. It’s a “cosmological constant” as a side effect of the limitations of enumerating causal and contributing factors.

People believe acupuncture is a placebo, and in an evidence based medicine regime it seems reasonable to prescribe it. But it depends what you’re calling pathological. Today, a population of video game players versus a control will score better on many psych outcomes. Tomorrow, they’ll change the tests, subtly, to account for “factors” better, and the results will reverse. The USMLE study book in 2018 pathologizes “video game fixation” (they can’t call it an addiction) before such a test change has occurred. The simple rule is that whatever society determines to be pathological will trickle down to the field of medicine, and placebo effects are the loudest signal of the limitations of an otherwise most superior way to administer therapies.

> Placebo doesn’t actually help you

What?

The first definition of the placebo effect I found was this:

"a beneficial effect produced by a placebo drug or treatment, which cannot be attributed to the properties of the placebo itself, and must therefore be due to the patient's belief in that treatment"

My highlight.

You're right that changes in diagnostic criteria and statistical effects can cause a placebo group to look better or worse over time without the placebo having done anything. This is important, and thank you for the reminder.

However that is not to say that the placebo effect never helps you. As http://protomag.com/articles/the-placebo-problem shows, people who are receiving a placebo will experience medically significant effects, and which effects they experience depend on which placebo they got. Furthermore the reason why double blind studies became standard is that it turns out that the doctor's knowledge has an impact even when the doctor is trying to not communicate it. That is, if doctors are told that one group is receiving a placebo and another is not, the group that is not will do better EVEN THOUGH both groups are in fact receiving the same placebo! (I heard about this some time ago as a classic study, but I can't seem to track it down easily.)

>Anyone who finds this controversial has psychological issues with reality.

Isn't that something you can say about much of the population though? It seems to me that humans, in general, have psychological issues with reality.

But who’s to say which group’s reality is real and which group’s reality is false? In the end it boils down to politics and public perception - or in today’s world, whichever group is more effective in leveraging the large online platforms to their advantage.

you know whats funny? CFS has one of the lowest placebo response rates.

Mandatory reference for those unable to google: https://www.ncbi.nlm.nih.gov/pubmed/15784798

I agree with possible psychological components is several health conditions. But saying that all acupuncture treatments are placebo is contradicting your first point, besides there are scientific studies that explains mechanisms behind acupunture.

What scientific studies would those be? And by what standards are they scientific?

Until a randomized controlled study can demonstrate real differences between acupuncture conducted with real needles and sham needles, I will happily call it a placebo. Ditto for acupuncture conducted per the way that acupuncturists think it should be conducted and acupuncture conducted per the way that they think it should not. Those studies have, in fact, been conducted. Acupuncture did not, in fact, do anything detectable. I am therefore on the side of calling it a placebo.

See http://www.dcscience.net/2013/05/30/acupuncture-is-a-theatri... for more.

Curious, if put in practice, what is the reference group for the placebo group?

Not parent, but don't we buy into our own placebos all the time? I was told I had RSI. I got a trackball and a ergodox. I don't have any issue when I use these two devices. When I use my planck my hand is a giant cramp within five minutes.

Sure, I think that the ergodox' layout helps and the trackball sure feels better. But based on the level of difference these two things have made and so quickly, I can't help but believe this is just a placebo.

Before the ergodox I used a planck and a vortex vibe and had zero problems with them. I initially purchased these two devices to combat my RSI and they too worked. Then I was recommended the ergodox and after using it the other keyboards are no longer effective. Swapped one placebo for another.

I don't think it exists outside of scientific trials. I can't imagine getting a prescription from your doctor only to find out it was a sugar pill to be accepted by society in any way.

There's a lot of people in the thread who are saying that people are reacting the way they are to this study because of the "stigma" against mental illness. Well, maybe that's part of it. But there are other things going on here. The Reuters article references the PACE study. And people are not just objecting to the "stigma" but the actual consequences of the study.

https://statmodeling.stat.columbia.edu/2015/12/18/28362/

> I agree it’s an absolute disaster of a paper. It otherwise should not be the object of my attention but there is some nastiness associated with its dissemination. Peter White, one of the authors is paid for working with a group trying to get social welfare payments denied to people with chronic physical illness. He promotes the idea that chronic fatigue syndrome, whatever its origins, is perpetuated by fears of exertion. The deconditioning model that is the basis for these claims has been discredited. So he is forced to rely on dodgy research like this to promote the view that chronic fatigue syndrome is largely “cognitive” and psychosomatic. I’ve seen horrible testimony from him that patients who “appear” to be disabled should be denied handicap parking passes because that will force them to walk more. He has personally testified in a number of hearings where patients with chronic fatigue syndrome have had the benefits revoked.

In other words, the study is being used _by one of the authors_ to deny people state benefits meant to help people with chronic conditions.

>In other words, the study is being used _by one of the authors_ to deny people state benefits meant to help people with chronic conditions.

No, that is simply not true. You need to be careful who you listen to. Coyne has a history of nasty abuse against people who disagree with him [1], and there is no evidence whatsoever for that particular statement that you quoted (I just looked for it). PACE was funded by DWP, but it is a huge leap to say that they wanted to deny benefits. They are clearly interested in effective treatment, and if you listen to the recent debate of ME in parliament the DWP specifically have a policy of giving benefits for ME.

[1] https://www.thetimes.co.uk/article/scientists-trade-insults-...

The sadest part about this is that it's all because the stigma against mental health problems is so strong that people are this outraged over research that might even suggest their illness has a psychological component.

Lots of overwritten comments in here trying to make this into something that it's not. How strange.

I wish we could not do this because CFS sucks and research into it has the potential to make a lot of people feel better. In a perfect world we would just let that research happen and ignore it until it proves something useful about treating CFS.

I guess what people might worry about is doctors saying "I heard about XX research" and then ignoring symptoms even if the diagnosis doesn't really fit or the treatment isn't helping, but that seems like a problem with doctors. The whole "it's all in your head" thing seems to come up often and it's not restricted to CFS, though CFS might be used as a lazy catch-all diagnosis when in fact there is something going on that is well-understood and treatable. Speculation, of course.

These activists seem to be promoting an all-or-nothing approach to medicine. But attempting to alleviate symptoms seems like a valid - and common - medical approach. If physical therapy or talk therapy can improve the quality of life of CFS/ME sufferers, isn't that worth knowing?

The problem is that in many chronic fatigue patients they would have to choose between physical/talk therapy and eating or showering for the day. Its a severe disabling condition, not just feeling "tired."

This is sad. What's striking is this artificial mind / body, psychological / biological way of thinking.

All psychology stems from biology. Having a condition that may benefit from a psychological intervention doesn't mean it isn't real. It's like developers saying that you're not allowed to fix software bugs, because unless it's a hardware bug you're saying it's not real. Weird and counterproductive.

This article seems to gloss over possible physical causes for CFS/ME, sort of implying that nobody has any idea what physical basis there might be for it. But that's…not entirely true?

For example, there's at least some evidence linking it to mitochondrial dysfunction, see e.g.: https://me-pedia.org/wiki/Mitochondria

> There is evidence of mitochondrial dysfunction in chronic fatigue syndrome patients. Muscle biopsies have shown evidence of mitochondrial degeneration, deletions of mitochondrial DNA, the reduction of mitochondrial activity, and Sarah Myhill found measurable mitochondrial dysfunction correlating with severity of illness. Myhill also produced improvement by targeting those dysfunctions. Mitochondrial DNA variants correlate with symptoms, symptom clusters & symptom severity.

Far from conclusive, but I think worth at least noting.

From both reading a variety of sources on the topic, and having someone close to me with CFS/ME for many years, I think it's pretty clear that a) there's most likely a physical basis for it, b) we don't yet know how it works, and c) research on this is drastically underfunded.

Considering millions of people are affected, there should be way more resources put towards it. Hundreds of millions of dollars per year, to put it on par with funding of similar diseases. (See: https://www.meaction.net/2017/01/07/dimmock-mirin-jason-esti...)

I think that ME/CFS will go the same way as MS.

Once upon a time, not long ago, MS sufferers were deemed "hysteric", "crazy" etc, until there was technology that could show physical evidence of the damage caused by MS.

A family member of mine suffers from severe IBS, including the ever-maligned apparent sensitivity to gluten. Until fairly recently, many doctors considered these complaints to just be hypochrondria. But, if one has severe diarrhea every time one has a trace of garlic or onion, even unknowingly, it's real.

As an aside, IBS sufferers usually aren't sensitive to gluten (unlike with celiac), but fermentable sugars that always occur alongside gluten.

Except, of course that no-one sensible is calling these suffers 'hysteric' or 'crazy' are they? Certainly not this researchers. They are simply saying that their symptoms may have a psychological component. Which should not be controversial, if evidence-based.

Are you sure about that? Insurers and primary care doctors are often very dismissive of symptoms, and may invoke the (wholly innocent and well-intentioned) arguments of researchers to deny treatment. That's not the fault of the researchers, but conversely researchers need to be mindful of how their work might be employed in the service of economic rather than clinical considerations when developing their hypotheses.

Problem is it’s not evidence based and we know there’s not a psychological component. The PACE trial and work of Sharpe are pretty widely debunked which is why they complain of being under attack. (See links elsewhere.) Meanwhile if you go watch some videos by the scientists at OMF and Stanford and elsewhere you’ll see they’re uncovering big differences in the bodies and blood of people with ME/CFS. It’s looking like it’s probably going to turn out to be an pretty complex autoimmune disease.

So when Sharpe and his friends continue to point fingers and say it’s in your head to these patients, and continue to push their exercise therapy, and continue to sow confusion, it’s really easy to see how they cause offense. Because they’re doing real harm to sick people by doing that. All because their egos are more important than hard science.

I’m not sure there is a fix here. Facebook, Twitter, Reddit, et al can be used as powerful tools to conduct organized harassment and coordinated bullying. And the bullying is remarkably visible and thus easy to report on so we also hear about it all the time.

And yet this is ultimately just normal human behavior, amplified. There have always been crackpots who lead frustrated and scared people into mob behavior of blaming some specific opinion or type of person rather than confronting their problems head on. When your problems seem unsolvable you’re very likely to fall for this sort of trap.

This specific issue with CFS research is just one microcosm among thousands of others, all the way up to the world of national governments and international relations, which suffers from all the same behaviors and toxicity. It’s amplified more now, but no different than it has ever been.

I hope we find more individuals and companies that just opt out if the entire Twittersphere.

Everyone does not deserve an equal voice on all topics and tempting yourself to read such unchecked commentary is only personally counterproductive.

Keep a few trusted advisors close, toss the rest of the social justice couch warriors to the side.

Twitter is a cesspool of degenerates and people with nothing to do with their lives except hunt for that dopamine hit. What do you possibly gain by having a social media presence? You have everything to lose.

People are harassing a scientist for crying out loud. Nobody has a chance.

So there's basically three things going on here which need to be clarified.

1) People advocating alternative therapies stirring up trouble

> "The campaigner and doctor behind MAIMES, Sarah Myhill, has posted YouTube videos setting out her views: “I liken it to child abuse,” she says in one that has been viewed more than 8,000 times. “This amounts to a form of abuse, because these people” – CFS/ME patients – “do not have the energy to defend themselves.” Myhill has published several books advocating what she calls a “naturopath’s” approach to treating symptoms of CFS/ME – one using a tailored combination of nutrition, rest and medicines. She hasn’t published peer-reviewed research on the efficacy of her approach."

This is highly suspect, like the group of quacks that started pushing "vaccines cause autism". It would be different if they were participating in the scientific process themselves.

2) People who have been denied treatment or disability accommodation because "it's all in your head".

To them, someone arguing that there is a psychological cause is not facilitating them getting the right treatment, it's someone preventing them getting treatment.

Given the interaction with disability benefits, having your disease declared to be in your head may result in the money you need to live being withdrawn. It's very high stakes.

3) Random internet cranks.

There are a lot of these, and someone who is unable to work and not very mobile and in constant pain is the ideal candidate for self-radicalising into a hate campaign. They have nothing else to do.

>Given the interaction with disability benefits, having your disease declared to be in your head may result in the money you need to live being withdrawn. It's very high stakes.

I didn't think a disease being mental ('all in your head') was relevant to disability? At least in the US I know people on disability because of mental illnesses.

I did say "may"; also, there's a very big difference between declaring someone's illness to be a "real" "recognised" mental illness, and declaring it to be "all in their head".

The UK system is particularly bad at finding spurious reasons to dismiss disability claims.

One actionable move would be to reach out to the Berkeley School of Public Health and inform them that their Senior Fellow David Tuller is engaged in unprofessional mob-wrangling behavior. Could contact the New York Times as well. I made a comparison to the behavior of anti-vaxxers, which seems like a pretty reasonable reference point which will communicate the issues quickly.

It could be helpful to the harassed researchers to at least establish a base of official complaints going the other way. Especially if they are written in a reasonable and evidence-based manner.

I can see both sides of this. Having read most of nih.gov /PubMed, it is easy to see how some research can easily be classified as paid advertisements. They are quite easy to spot once you have read through enough research. Telltale signs are a lack of prerequisites, lack of reproducible methods, lack of test subjects, lack of funding references, lack of email addresses. Some folks have even found it rather easy to get fake research papers published without anyone having actually vetting the data. So in summary, I believe some of the blame falls on the scientific community for not doing a better job policing itself and making it easier to report pseudo-research to moderators using a publicly transparent methodology.

In terms of the patients getting frustrated with a lack of acknowledgment of their issues, I believe that is due to a misconception about the medical industry. It is very rare to find doctors that will "color outside the lines", so to speak. If a medical condition is not well documented and accepted by the medical industry and insurance companies, then a doctor is risking a journey down a rabbit hole and risking the patient being frustrated without having a clear path to a treatment (for symptoms or a cure). It is frustrating for everyone involved, but I don't think this is something that medical professionals can do anything about. I have no idea what the right path is. For my own issues, I have considered starting forums for scientists and biohackers to share findings, but I am just lazy and busy enough to kick that can down the road.

> The insufferable arrogance of Prof Michael Sharpe once again on show for all the world to see - Paul Watton

> You need to be as arrogant as men are to believe we changed the climate - Nicolas Sarkozy

I find this criticism - that you would have to be arrogant to believe scientific results - both fascinating and deeply disturbing.

I'm not sure if it's an ingenious thought-terminating troll hack - raising a social complaint (which humans instinctively fear) as a sigint to abort further thinking, or just profound idiocy.

It could be people reaching for extreme and hyperbolic language to express their emotions (maybe moreso than their ideas)

Calling these people 'activists' seems a bit disingenuous, since they just appear to be harassers. They aren't respectful and dig into the personal lives of the researchers. Later in the article it's even mentioned they harass patients who got better with the proposed treatment. At some point you are just an asshole pretending to be a saviour.

Who would have thought that a by product the internet - social media - would actually hold science back.

Maybe it's pessimistic, but I also see a profit motive here, the "psychological" CFS treatments have the potential to cut into modafinil/etc recurring profits.

It's not just scientists. It's most fields and most opinions that don't agree with whatever the cause of the day is.

I deleted my twitter account over a year ago (after ten years of it), and stopped using twitter. However, I still refrain from saying what I actually think about an issue online now. It doesn't matter if it's a left wing or right wing opinion, nor does it matter what the issue is. If you fall afoul of the online activists (regardless of left-wing or right-wing) it can suck up all your time and energy and ruin you.

The big problem is that it's easy to publicly shame and silence someone, with little to no consequence for doing so. And I place most of the blame here on Twitter.

The prevailing opinion is to just let the scientists do their work, and don't second-guess them. Well, there is a reason that they are being second-guessed. Look at all the harm that has occurred because of the old scientific consensus that we should be removing fats from our diet. The reasons for this consensus was not only shoddy studies, but there was a lot of politics involved, drowning out dissenting voices. Today, there are a lot of studies being funded by organizations that are influencing the results of those studies.

We should be questioning scientific studies. The problem is, people are going about it the wrong way. They are just throwing out the scientific method, logic, etc. Science is not flawed, but the studies are flawed, in that more than just science is being used to influence conclusions.

There has to be some blame put on the scientific community for why it is so popular to question their work in the modern era.

I have chronic fatigue syndrome since a bad viral infection in 2001. I find this article quite unfortunate. There is plenty of good research being done into CFS that does not generate the outrage that the PACE trial has. There are many reasons that particular study has been the focus of campaigners while other researchers are encouraged or left in peace, but I would encourage those who are coming to this issue here for the first time to do some more reading before coming to an opinion.

The abstract to the study itself is here (the full study is behind Elsevier paywall):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/?report...

David Tuller's blog critiquing the study is at:

http://virology.ws

Searching for "PACE trial" will bring up plenty of articles on either side of the debate.

My own thought as to why this particular study stirred so much controversy is that it has been seized on by some in the medical-political establishment in the UK as defining a solution for all CFS sufferers, and negating the need for further study into the condition (although recent hearings in UK Parliament have begun to reverse this approach), when really the effect demonstrated by the study is quite small. Fortunately, the US establishment has not taken this tack:

http://nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

https://www.cdc.gov/me-cfs/index.html

CFS remains a poorly-understood disease with a grossly underfunded research program when the number of people affected and the severity of the condition are taken into effect. Those who rally against PACE in particular seem to be mainly asking that it not be the end (or even the main direction) of the road in terms of CFS treatment and research in the UK.

In my opinion, global social media systems are toxic on nearly every topic, not just this one.

Hi, fellow here who also meets the ME/CFS criteria. These articles in which Sharpe and Weasley pop up are always very disturbing because they cry “ow, poor me, the big mean activists are attacking science!!” And it’s surprisingly effective as seen in this thread. People assume they’re doing real science, and the activists are of the bad type.

But in this case it’s Sharpe and is colleagues that aren’t doing real science, they’ve done an abortion of a study full of holes, and it’s been used to cause harm to very ill people. Causing denied disability, forced exercise (which is contraindicated for ME/CFS), and do on. Their study has been torn to shreds by other real scientists but they refused to accept it and they call this response activism.

Sadly as we see here lay people even in tech are all too eager to lap up their claims.

Prof. Bruce Levin at Columbia even started using Sharpes and co’s PACE trial as a teaching example of all the bad things you can do to make a wrong study. (His slides were online but I’m having trouble find them right now.)

Another accessible article on the subject:

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...

Edit: here is Sharpes colleague Wesseley comparing people who refuse their PACE trial to climate change deniers and antivaxxers. Its entirely them who are refusing the science though because it shows they got it very wrong.

https://www.forbes.com/sites/julianvigo/2018/06/27/resistanc...

As someone who is new to this subject as of this thread, let me share some honest feedback. The way you describe and defend your position leaves me deeply skeptical about your claims.

"Real science", "abortion of a study", "real scientists", "entirely them who are refusing the science"

Even if your claims and descriptions happen to be right, the certainty, starkness and immature/sweeping language have led me to assume I would disagree with you if I dug in.

Just sharing a piece of outsider anecdata.

> Many researchers cite evidence that talking therapies and behavioural approaches can help in some cases. Yet some patients and their advocates say this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic, a notion that enrages them. They would prefer that research efforts focus on identifying a biological cause or diagnosis.

this seems to be the case for many probably-psychosomatic issues in the modern age of tumblr self diagnoses

I wonder if it was grassroots or astroturf in origin. Following money, pharma is the only looser if some folks can live with out constntly being drugged and disabled.

Obligatory link to Kialo: https://www.kialo.com/should-governments-ever-limit-free-spe...

Mostly because of my thinking it'd be great if there were a site where actual debates could be had, empowered by technology, and supported by facts. Essentially long form debating.

And then something hit the HN front page that week.

Randoms leaving mean messages on your public social media isn't silencing you. The truth always comes out. You have real science or you don't.

The determination of what's real science or not should be largely left to domain experts. Randos online should have little to no say. This is how anti-vaxxers and creationists have such a huge presence.

Randos have no say. How are scientists even being influenced by them? Domain experts? Real science predicts the future, it either works or doesn't. Anti vaxxers are a different issue, I don't even think they deny the science and just want the personal choice to choose.

NPR's Invisibilia podcast started their latest season with an episode about amplified pain. Looks like they got some backlash, too.

https://www.npr.org/2019/03/06/700743108/the-fifth-vital-sig...

I was cured from CFS to the point I can live a normal life with a controversial substance called MMS in 2 weeks time.

The very same thing happened with a friend of mine.

It's not an attempt to win any scientific argument with anecdotes here, instead I am just adding my data points.

MMS is sodium chlorite, sorry but if it cured you, you were either not sick, or something else happened.

We have a lot of work to do understanding complex symbiosis. The skew in this qaugmire is simple; everyone is wrong and everyone is right. One on one interaction with an intelligent, compassionate person goes a long way.

I think one of the basics ways for us to combat this kind of situations is to be more mindful about the people who do good. A single, thankful email from someone who profited from his work goes a long way.

Some thankful emails isn't going to make up for a bunch of angry activists doxxing you and getting you fired.

Then carefully reiterate your premise/conclusion and if possible a recreatable conclusion. After all, it’s science!

Point of the article is that it's becoming toxic to discuss issues; they brought up climate change in the article. I posted a climate skeptic point of view and literally said I was testing to see how toxic it really is.

Absolutely nobody actually responded to the point I made. They called me a contrarian, a troll, being off-topic, using fallacies, and being insincere.

This is the point of the article and I literally showed it.

Usually you tell a scientist they are wrong by doing better science.

Check out hot yoga is my two cents.

This situation strongly reminds me of the book Seveneves, by Neal Stephenson.

This article seriously misrepresents matters. Not that there's no mention of the substance of the science.

David Tuller has written on this topic in publications like the New York Times: https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it...

There are some summary pieces from science blogs:

https://sciencebasedmedicine.org/treating-chronic-fatigue-sy...

https://senseaboutscienceusa.org/pace-research-sparked-patie...

There are also important political aspects to this, particularly in the UK, eg: https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleadi...

Cochrane commissioned a report which confirmed that Courtney's complaints about Larun's work were well justified: http://www.virology.ws/wp-content/uploads/2019/03/Cochrane-R...

If anyone has any questions, I'll try to answer them. This Reuters piece is more spin and BS from powerful people who want to avoid engaging in debate about the problems with their work.

The Journal of Health Psychology published an entire special issue on the PACE trial: https://journals.sagepub.com/doi/full/10.1177/13591053177223...

getting tired of tired people being tired of being tired.

There's bigger problem here: algorithmic manipulation of public opinion by well funded special interest groups (including some nation states). You can influence elections, legislation, cause riots, etc. with expensive but feasible campaigns of misdirection, fake news, provocation, and propaganda. Online activists are merely pawns; you need to look at the shadowy organizations behind them.

It so happens that the interests of these groups are well aligned with ad driven media companies that depend on manipulating their users into getting addicted with their content algorithmically. This means that provocative content wins over interesting niche content. It drives more users to engage more and come back for more. Bonus points if they get angry and frustrated, because they'll produce more content. Facebook, Twitter literally optimize for addictive quality because it drives their revenue. They want people to continuously check their feeds, have withdrawal symptoms when they don't, etc. It drives a lot of mindless content, constant streams of negativity, etc.

So, our current social media feeds, news media, etc. are highly susceptible to manipulation and the average media consumer is blissfully ignorant of the fact that they are being manipulated.

When it comes to science vs. a well funded special interest group or populist, the truth loses. Proclaiming the earth was flat was highly unpopular in the 15th century for religious reasons. Then we had enlightenment and it became established fact for a while. And now we have anti-vaxers, flat earthers, global warming deniers, christian fundamentalists, muslim fundamentalists, etc. being fed a constant stream of fake news, pseudo scientific bullshit, etc.

Mostly the people behind this manipulation are not even spreading truth but deliberately creating division. E.g. the Russians will happily troll all sides in a debate if it creates conflict. Whether it's e.g. the birther movement, the Clinton email scandal, etc. does not matter. It's not about spreading truth. Whatever gets republicans fuming or liberals protesting will do. It's all about division. Divide and conquer. Distorting the truth is a means to an end. As Trump has demonstrated, you can always deflect undesired attention by creating a bigger scandal. Modern people are like gold fish when it comes to attention spans. People getting to curious about his taxes? No problem, just insult women, blame Obama for whatever, or just plain yell something silly and surreal. It works. He's a great manipulator.

What I find interesting is that the Chinese and Russians seem to be more in control domestically of this and are less sensitive to external manipulation because they do all the manipulation themselves and filter out anything less aligned with the party line. So, China has no anti global warming movement and is moving full speed to fixing that problem for themselves by mass investments. They love science there because it empowers them and boosts their economy. Russia is a bit less successful, mainly because it has devolved into a kleptocracy. But yet, they keep a space program running, are producing scary weapons, etc.

IMHO the way out is introducing reputation into our feeds and countering hostile algorithms with friendly algorithms that take this into account. Also, ad business needs to die and we need to find alternate ways to reward quality news content. Fixing the incentives will fix the algorithms.

Why does a medical researcher need to be on Twitter?

Because they can and want to. Why are you on HN?

Because I want to comment. But if someone replies to my comments with the equivalent of hate mail, I won't say that they are "silencing" me.

If I go to that scientist's profile I can read his tweets just fine. Someone quoting him and saying he's an idiot is not "silencing" him.

If you plan to comment at a conference, and someone tweets the conference organizers, then your panel gets canceled, is that silencing you?

> Fink said he and the organisers of a conference he addressed at Columbia University in New York in October 2018 were hounded by complaints and protests from CFS/ME activists. A petition calling for Fink to be disinvited was signed by 10,000 people. Tuller – who in his blog wrote that the person who invited Per Fink to speak at the conference must be “uninformed or stupid or both” – called Fink a “scary guy” whose methods had “destroyed families.” Tuller urged readers of his blog to go to the Columbia conference and demonstrate.

This kind of stuff happens to IDW members constantly, except their venues have a pattern of giving in to the activists.

If someone makes it cost more to express your opinion, that has a silencing effect.

I don’t think you understand what silencing means.

Need vs want.

I don't NEED a computer at home, nor a mobile phone.

But I want one. And I am allowed to have one.

And someone else's dislike of my having those things does not stop me from being allowed to have them

Possibly a bit need? I'm not sure if academia actually uses Twitter to network, but I wouldn't be surprised. Last exposure to university was in proto-FB days.

Per analogy, one could probably argue that you need a phone of some sort (per professional expectations).

During work: I think it depends on your profession. If your job does not involve interacting other humans in any way, or you are all in the same room, then you do not need a phone to communicate.

Job hunting: This would be significantly harder without a personal phone, but regular trips to a recruitment agent's office could make it possible. I can certainly see that it would be a significant advantage to have a phone.

At home: Hugely depends on how far and wide your family have spread. If they are all within walking distance, then you don't need a phone. Sure it's more convenient, and sure, you'll spend a lot of time outside people's houses wondering if they're actually in, but that's how I grew up without a mobile phone. Interestingly, I would counter-argue (with myself) that you do need a phone if you are the only family member in a remote area, if only for your mental health.

Emergencies: Yes, sometimes you just need a phone.

So yes. A bit need.

I don't dislike people having Twitter, but to be on Twitter you need to have a thick skin, and if you don't then you shouldn't be there.

Instead of normalizing outrage and harassment, why not say the opposite: 'To be on twitter you should treat others with respect, and if you don't then you shouldn't on there'

Obviously that's not representative of Twitter right now, but why can't it be?

This is not scientific research, it's chronic fatigue researchers getting hate mail. Also, it's not activists, it's random crackpots.

Edit: look, read the article, and then downvote me if you must. I am sure that online activists in many areas are reducing public discussion. I'm not addressing the subject in general; just this article. Specifically, the article talks about a very particular narrow, topic (chronic fatigue syndrome and research indicating that it's psychosomatic) and doesn't talk much beyond one actual activist in that area, Tuller. The title would have been better as, "CFR activist harasses CFR researchers".

Edit: could hardly get downvoted more than I have been already, but the irony that "activists" are silencing people is rich. Maybe anti-activist activists are activists, too.

You can be an activist and crackpot. These things are orthogonal.

Probably correlated, even

>Also, it's not activists, it's random crackpots.

The difference being?

If you've ever spent any time around "activists" you'd realize there's not much of a difference.

What nonsense is this? I know many activists and they are dedicated, smart, passionate, clued up people with a social conscience to be envied.

In my experience, sane people volunteer for a cause they believe in. "Activists" grab a megaphone and disrupt any gathering of people who disagree with them on said cause, because they've convinced themselves that they are morally superior for their beliefs.

Revilers on the rise

Over the last 100 years or so, we have gone from having Philosophers who were the thought leaders (and shapers) for the masses to legion of online warriors.

I feel like the topic of CFS is irrelevant to the story. Why is there such toxicity online creating these echochambers.

If you point out anything that might question climate change for example, you will be called all kinds of names. Nobody looks at the points you are making.

Let's test it right now. I'm sure I'll get downvoted and nobody will respond.

https://en.wikipedia.org/wiki/Geologic_temperature_record#/m...

Over the last 5 million years temperature has been going down but also becoming more aggressive in the swing in temperature. If you look at the last 20,000 years we are in the standard rapid spike in temps and CO2 and we have NOT spiked any higher than you would expect.

The minor spike in CO2 in the last 200 years is a small fraction of the spike over the last 20,000 years.

If you look up the Eocene period(after the dinosaurs went extinct). It was 14celcius warmer than today's climate. Life was great back then; Canada/Russia wasn't a frozen wasteland.

Climate change is good.

I don't have time to research your contrarion claims right now. My priors suggest it isn't a good use of my time. But I have to ask:

Why haven't the climate change researchers figured out what you have?

Do they have rebuttals to these claims? If so, can you please link those rebuttals in the name of transparency?

P.S. You are being downvoted for being wildly off topic as well as a bit inflammatory.

How is this wildly off-topic if the subject of the article is online harassment of scientists, and climate change is specifically mentioned? The implied direction of the harassment might not be what the OP was talking about, but it's certainly related to the topic.

As for the inflammatory bit, you might have a point there, but the kind of climate change that enabled humans to evolve might garner that fabled 97% of backing not only from scientists, but humanity in general. So in the proper context, climate change is good.

> How is this wildly off-topic if the subject of the article is online harassment of scientists, and climate change is specifically mentioned?

I read the article and didn't notice it. Looking back, it was an offhand mention in a fragment of a single sentence. Clearly not the focus.

> As for the inflammatory bit, you might have a point there, but the kind of climate change that enabled humans to evolve might garner that fabled 97% of backing not only from scientists, but humanity in general. So in the proper context, climate change is good.

This is a strawman. No one is talking about that kind of climate change.

I will admit it was inflammatory but I had to pick the most contentious subject such that this forum will have the appropriate echo chamber response.

If I brought up Michigan state politics, virtually nobody would care.

>I don't have time to research your contrarion claims right now. My priors suggest it isn't a good use of my time. But I have to ask:

I think you've just proven my real point I was making.

>Why haven't the climate change researchers figured out what you have?

What happens when your research provides evidence or an argument that doesnt fit the story of climate change? You get labelled a climate denier and nobody will look at your data 'because it isnt a good use of their time' and the 'consensus' is that you are wrong. Then you never get funding again.

>Do they have rebuttals to these claims? If so, can you please link those rebuttals in the name of transparency?

I'm providing graphs and explaining the graphs. It's a fact that the world was 14celcius warmer in the eocene and had 10x the CO2. There's nothing to rebuttal unless you're going to go after my sources. I picked this on purpose because there is no rebuttal. Anyone reasonable should be able to look at my comments and reasonably look at the data.

>P.S. You are being downvoted for being wildly off topic as well as a bit inflammatory.

If you read my post again. I literally say it.

It's the toxic echo chambers which disallow an alternative viewpoint. I'm right on topic about explaining and showing the echo chamber. Climate change is also not the topic.

I challenge you dwaltrip to go into your usual circles and try to argue an alternative option. Devils advocate if you were; just dont tell them you're doing it.

Pick whatever subject you like and see how people react to you.

Saying "there is nothing to rebut" is not a response.

You are claiming that the consensus view of climate change has literally nothing to say in response to your points? I find that very hard to believe. Have you done your due diligence and actually searched for any rebuttals?

You'll be downvoted for being off-topic, excessively contrarian and uttering non-sequiturs.

Paleoclimatology bears no relevance to the effects climate change will have on human civilization, and extant life more generally. i.e. it does not follow from the fact that life has (and could again be) adapted to Eocene-like conditions, that "climate change is good".

>You'll be downvoted for being off-topic, excessively contrarian and uttering non-sequiturs.

Thanks for once again proving my actual point; which had nothing to do with climate change.

Nah. If you had sincerely posted something critical of climate change (on a more relevant article) that wasn't nonsensical at first sight, and were downvoted without being responded to, then sure. Call HN an echo chamber.

But you were just being a contrarian troll.

it's not good nor bad. that's an opinion, and opinions have no place in the realm of science. that being said. climate change is natural, and has been going on without humans, and will do so after we are long gone

There are many things which are scientifically bad. How about all the science that was pro-leaded gasoline? https://en.wikipedia.org/wiki/Robert_A._Kehoe

This guy created fake science; would this not be scientifically bad?

For the record, climate change is not the subject of my post. It was hostility; which the responses to my post proved this.

Thanks for posting this, I now have a new opinion on climate change :)

Certainly not my intention. The take away I want you to have from this comment isn't climate change but the fact that you should be open to looking at evidence from either side of any subject.

I'm 100% certain the earth isn't flat.

If someone is proposing the earth is flat, you shouldn't call them a moron. You should find out their evidences. Talk to them about their evidences and see if they can change your mind.

You are aware of the westboro baptist church law firm where they say inflammatory things like God hates gays to get people to get angry and then they sue the person and press charges for damages.

Most people would never talk to these people. However https://www.ted.com/talks/megan_phelps_roper_i_grew_up_in_th...

By engaging in conversation you can change people. IF you think you are right about flat earth. Talk to them.

I'd like to comment here that this is primarily about chronic fatigue syndrome. There are other handwaving statements towards vaccines, global warming, and GMO, but none of those statements have a clear factual outlay. It's particularly interesting to me that it was implied that the activism against physical exercise/CBT to treat (not cure) chronic fatigue had done damage to the motivations of scientists to perform further research into the treatment of chronic fatigue.

This was distinctly not about common controversies around identities such as the existence or non existence of biological/cognitive differences of race, sexuality, and gender, even though those would be IMO the most pertinent subjects to cover about how(and if) science is affected by activism (as they have the most significant activists for all possible political opinions). I find that this exclusion particularly fascinating, or is it perhaps I am personally biased to assume they're more common and more obvious journalistic study due to my existence in tech, where the gender and racial gaps are talked about by all of the leading industry employers?

EDIT: I should clarify I do not know if science is affected by activism, but anecdotally I hear a lot about how such-and-such field of study (particularly about race, gender, and sexuality) is being limited because of activism. I've never seen actual evidence of this limiting, and the fact that this article explicitly excludes all three may be a 'absence of evidence is evidence of absence' scenario. Or again, it may be that I am personally more aware of those specific discussions due to my presence in tech where those positions are taken far more than chronic fatigue syndrome is discussed.

> There are other handwaving statements towards vaccines, global warming, and GMO

It's not entirely clear from the layout, but that bit of content is a kind of "info box", a bit of extra information that in a printed magazine you'd find in a box alongside the main article, meant more as context than as a substantial article on its own. That explains why it merely points out these other cases where activism might clash with science and doesn't go into detail.

> This was distinctly not about common controversies around identities such as the existence or non existence of biological/cognitive differences of race, sexuality, and gender, even though those would be IMO the most pertinent subjects to cover about how(and if) science is affected by activism

It would be a different article then wouldn't it :-)

1. Yes, the extra information provides context, but not a solid and deep exploration.

2. Yes, it would be different and I think it's very interesting that the broad journalistic investigation "is research influenced by activism?" does not reach to the most prominent topics that come to mind of "topics that have a lot of controversy, for which there are claims that research in this sphere is influenced by activism". The fact it covers CE as an example, and not race or gender could imply that there isn't research that states differently than activism, whereas CE does have this split.

EDIT: The claims that I'm mentioning have already been populated in this discussion thread as a whole, so I'm pointing out that there doesn't appear to be evidence in this article that politically "leftist" politics is suppressing academic research, but is focused quite specfifically on CE/CFS, which doesn't appear to fall into a clear leftist/rightist deliniation of beliefs.

I don't think you should draw conclusions about any other areas of research from this piece. I didn't get the impression the article was trying to make any broader statement about activism vs research. The piece gives one example of that tension, but that tension is not the focus of the piece.

The article was a specific investigation into the dynamics between vocal CFS activists and researchers pursuing a particular path of treatment.

In short, the conclusions you are trying to draw are completely out of scope for this article.

I feel like posting your personal science based work on social media walks the thin line between education and self interested-marketing.

What if after a year of posting, you find an error in your study? You have just misinformed everyone for a year. How do you backtrack on that?

You...post updates to your study via the same channels?

Also, this assumes that all "errors" are alike, but a methodological error in a study is very different from "new evidence has come to light that questions the hypothesis", "we now know that these things have a third common cause", "we discovered in subsequent research that there are confounding factors we did not know to control for in the original study", etc.

IMHO, this comment badly misunderstands the point of scientific inquiry. It isn't to produce a final and immutable result, it's to make observations to rationally assess a hypothesis, and then to repeat the process. This means that science necessarily represents the best interpretation we have for existing observations, with the understanding that subsequent observation might show us confounding factors we couldn't have thought of before.

To put this another way: what if Newton had articulated his understanding of physics in the internet age, and then relativity came along? Do we now tar and feather Newton because he failed to anticipate the contradictions between his position and subsequent observations around the speed of light? That seems like an impossibly high standard to hold scientists to, and that to me is the crux of the problem: we should be expecting scientists to get things progressively more right and to explain why, not to get it completely right the first time.

Publish a correction; aren't scientific papers proved wrong / revoked / corrected / amended / superseded all the time?

People need to accept that both they, and others, are allowed to be wrong. They need to be able to express that without backlash.

>What if after a year of posting, you find an error in your study? You have just misinformed everyone for a year. How do you backtrack on that?

If a paper turns out to be flawed, then you retract the paper. In order to retract it, someone needs to figure out that it was in fact flawed. Most scientists don't knowingly publish bad research, they just make mistakes that get missed in peer review. Keeping research hidden away in paywalled journals isn't going to improve the quality of science one iota.

Expecting scientists to maintain radio silence is roughly analogous to security by obscurity, with the same obvious shortcomings. The literature is full of widely-cited studies with significant methodological flaws, because they're useful enough to cite but not important enough to warrant serious scrutiny. If we're serious about building a credible scientific literature, we need to subject papers to the disinfectant of sunlight. We need to leverage the power of social media to make connections between scientists, iterate faster, bring informed laypeople into the conversation and find those bad papers.

> If a paper turns out to be flawed, then you retract the paper. In order to retract it, someone needs to figure out that it was in fact flawed. Most scientists don't knowingly publish bad research, they just make mistakes that get missed in peer review. Keeping research hidden away in paywalled journals isn't going to improve the quality of science one iota.

Except OP wasn't suggesting keeping silent, he was suggesting not broadcasting it on social media. You can broadcast it through scientific channels of course, because scientists generally know to preserve some healthy skepticism until something is replicated.

Some new result on social media could easily go viral so almost everyone hears about it, but do you think the retraction on social would get the same attention? Of course not, so it's about stopping the spread of misinformation, which I hope you agree is a problem these days.

The public discourse around science is dominated by non-scientists, many of whom habitually make grievous and blatant errors. Telling scientists to "stay in their lane" and avoid talking about their research in public isn't going to improve the quality of that discourse.

Perfect knowledge is impossible. All information is misinformation to varying degrees.

All scientific studies have errors. Science itself is the process of finding errors and correcting them. It is a asymptotic journey of discovery that tries to obtain perfect knowledge but will never quite reach it.

Imagine your horror when you discover research used to primarily distributed in offline print copies that can't be remotely updated!

Given the number of times I've tried to read a paper and found that it's locked behind a paywall, I'm all for the idea.

Copy of what I sent him:

"5 years ago I wanted to be a pro wrestler and had taught myself a couple advanced level gymnastic skills. I went to shovel snow one day after a blizzard and after 12 hours of work developed a case of mono that lasted for three months. i was never able to do my workout routine more than once every week or two after that. In 2016 I got a job that required me to walk 13 miles a day and lift 100 pounds. I got mono and switched to a job that just required 5 mins of work and 8 hours of staying awake. my case of mono lasted for a year until i quit my job. it was devastating, i became frequently confused and unable to understand language and lost over half of my physical strength. most foods would induce pain that lasted days. I got better after I quit my job with a treatment i found a doctor recommend online. since then ive sleep 16 hours a day and get sore throats if i spend too long on my feet. im frequently sore and tired and unable to exercise. i could still beat your ass tho pussy."

> There is no biomarker or blood test to establish diagnosis ...

So arguably there is no "CFS/ME". Arguably, there are many conditions that can be diagnosed as "CFS/ME". And so it's not surprising that some patients benefit from talk therapy. And that other patients won't, and will be insulted by the very idea.

About being "silenced" by online activists, that's just the Internet working as expected. Or at least, expected if you really thought it through.

That's not how science works.

CFS/ME is a diagnosis based on real, observable behavior. The lack of a scientific explanation for the cause doesn't mean there isn't a cause, and it certainly doesn't mean the condition is not real. It means the cause has not yet been isolated by repeatable experiment. (And yes, it's possible that there are multiple conditions all diagnosed together as CFS/ME, and that some of them are purely psychological. But it's also reasonable to assume that some or all have a physical cause.)

Long ago, we didn't know about germs, and people believed diseases were caused by sin (and arguably, some still do). Doesn't mean the diseases weren't as real then as they are now that we know what causes them.

I didn't say that some don't have a physical cause.

> CFS/ME is a diagnosis based on real, observable behavior.

That's not a meaningful diagnosis. It basically comes down to something like "people who report this set of symptoms, and who don't test positive for anything we know about". Medicine is full of this stuff. They used to just put it in Latin. Because then it sounded like they knew what it was.

Doing reliable science with human subjects is hard. And when you don't actually have a reliable test for something, it's impossible.

I'm not saying that any of these diseases diagnosed as CFS/ME aren't real. I'm just arguing that it's hard to assess treatments when you have such a poorly defined diagnosis.

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