Fighting Over Fatigue | Hacker News Reader

Fighting Over Fatigue

mosaicscience.com

21 pointstomkwok22 comments

From what I recall, the result of the PACE trail was a bit of a farce. There were 3 categories of outcome for the patient: no change, better, or worse. Each of these categories contains roughly a third of the subjects. Despite such a glaring failure to produce a useful treatment, the PR spin focused on the third that got better, rather than the third of patients who got worse after the PACE treatment.

Surely this kind of breaks the medical tradition of "first, do no harm". The anger generated by ME patients in the UK was caused by the fact that it was proposed they would lose their benefits if they did not participate on a PACE treatment, a treatment that caused no improvement or made ME patients worse in 66% of the trail subjects.

A more open mind must be taken by researchers when approaching ME as a illness. They must remember they are dealing with subjects that have frequently dismissed as lazy, over-sensitive, and in many cases lying about their symptoms.

Disclaimer: I had ME for 2.5 years about 25 years ago, so I have been subject to family, doctors, friends and even strangers dismissing my muscle pain, blinding headaches, insomnia, continuous cramps and inability to regulate my body temperature as "all in the mind".

I wish anyone reading this who is suffering from ME all my best wishes - I remember clearly how ME feels.

I am now a healthy 45 year old man, who can now play tennis for 4-5 hours continuously without ill effect. There can be a future after ME for all of us if medical researchers continue to search for a solution, rather than classifying it as "all in the mind" as the PACE trail was seemingly intended.

>From what I recall, the result of the PACE trail was a bit of a farce. There were 3 categories of outcome for the patient: no change, better, or worse. Each of these categories contains roughly a third of the subjects. Despite such a glaring failure to produce a useful treatment, the PR spin focused on the third that got better, rather than the third of patients who got worse after the PACE treatment.

I'm not sure where you got that info. I just had a look at the 2011 and 2013 papers, and didn't see that. You're implying that treatment had no benefit, but that's definitely not what they found. If you look at the results, you'll see that CBT and GET did result in an improvement in the average scores of patients. It wasn't a huge improvement, but it certainly was an improvement.

I did not imply the treatment had no benefit. I stated that one third got better, one third had no change, and one third got worse. This is not a good result - a third of the participants got worse.

In addition, 13% of the participants on the trial had already recovered before the trail began, but were not excluded.

Finally, the thresholds for being “recovered” demonstrated worse health than the scores required in the first place to demonstrate the severe disability needed to enter the trial. This anomaly meant that some participants could get worse on physical function and fatigue during the trial and still be included in the results as being “recovered.”

“I’m shocked that the Lancet published it,” said Ronald Davis, a well-known geneticist at Stanford University and the director of the scientific advisory board of the Open Medicine Foundation.

“The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review”, added Davis.

>I did not imply the treatment had no benefit. I stated that one third got better, one third had no change, and one third got worse. This is not a good result - a third of the participants got worse.

Do you have a reference for that? Overall, patients got slightly better on average. Even if some got slightly worse, on average there was an overall benefit.

>In addition, 13% of the participants on the trial had already recovered before the trail began, but were not excluded.

That's incorrect. The physical function was just one measure. To be counted as recovered, patients needed to meet other criteria and it would have been impossible for patients to be recovered at baseline. This seems to be a piece of misinformation that is spreading around patient forums. You're better reading the study itself rather than other people's (perhaps flawed) interpretation of it.

> rather than classifying it as "all in the mind" as the PACE trail was seemingly intended.

It's intensely frustrating that ME sufferers dismiss psychiatric illness as "all in the mind". It's hateful, ignorant, stigmatising, and stupid.

Obsessive Compulsive Disorder is "all in the mind", yet it's listed by world health organisation as one of the ten most debilitating illnesses.

By pushing this "it's not in my head" bullshit ME sufferers make it harder for people to get evidence based treatment.

You're wrong about PACE too. http://www.ncbi.nlm.nih.gov/pubmed/26521770

I'm sorry if you took offence at my use of the idiom "all in the mind" - its intended meaning is "imagined" rather than "psychiatric". I am not implying psychiatric illnesses are not real.

Regarding the PACE trail; I was referring to the trail conducted in the UK. About 73% of people with ME do not gain any benefit in symptom relief when CBT is used as a primary intervention.

http://www.meassociation.org.uk/2015/10/press-release-me-ass...

Not a single research believes that CFS is imaginary, even proponents of the cognitive behavioral model of CFS. They say that psychiatric factors influence the illness. Even Wessely himself published a review saying that the immune system was "almost certainly" involved in the etiology of CFS. This "all in your head" accusation is just a strawman.

I think a lot of militant patients incorrectly believe that there is some arbitrary division between mind and body, and that the mind cannot cause physical symptoms (which is, of course, demonstrably false). I think this is caused by a general prejudice against mental illness, as well as a general misunderstanding of how the body works in terms of psychosomatic interactions between mind and body.

"I will argue that ME is simply a belief, the belief that one has an illness called ME..... .I will argue that this line here [overhead slide] represents not the line between low and high cortisol responses [but] the line between real and unreal illness."

Simon Wessely, Microbes, Mental Illness, the Media and ME: The Construction of Disease, 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, April 1994.

Although he may have softened his stance in the past few years, this is fairly representative of Simon Wessely's views during the past 20-25 years.

As I understood it, the similar comment he made in "old bottle, new wine" was referring to the idea that ME is a viral illness when he said that ME is just a belief. He has said in other places that he believes that CFS/ME is a real illness with severe symptoms, as he has done research showing that the immune system is involved.

It could be that he has changed his stance in recent years.

I had CFS and I believe it is almost always physical. It’s hard to tell because it feels mental. I saw a ton of different Drs and endocrinologists who all told me I was physically fine and it was mental. I looked healthy, I felt depressed. It significantly impacted my life.

After many years of self experimentation and internet reading here is what made sense for me. I had high T4, low T3, and low cortisol levels. My working theory is subclinical hypothyroidism and adrenal fatigue. The theory for the cause is long term high levels of stress (tech startup) and imbalanced microbiota.

I treat it with natural desiccated thyroid (edit: not compacted thyroid), licorice root, light therapy, blue blockers, strict sleep schedule, quit coffee, regular exercise, paleo diet, probiotics, and fermented food. The thyroid meds made the biggest and most immediate difference, it was like switching a light back on. I’ve quickly turned into a hippy and I’ve never felt better.

Thank you internet!

It's really hard to tell just from symptoms whether it is mental or physical. And from your explanation, it sounds like you're saying it was from stress (i.e. mental), but caused physical effects (reduced cortisol, etc). It's well known that stress causes these effects. I'm not sure it's helpful calling it either physical or mental. Psychosomatic is the correct term, but it is widely misunderstood (most people think it means "imaginary"). Perhaps functional is the best term to use.

As for treatment: what exactly is compacted thyroid, and how would it help with cortisol? The low cortisol in chronic stress is central in nature (due to changes in the brain), so how would any of your treatments change your brain?

Bear in mind that psychiatric interventions and have been proven to treat low cortisol, so it could just be the lifestyle changes you made that resulted in improvement.

> Psychosomatic

Somatoform or somatic symptom disorder is newer and preferred, because of the stigma perpetuated by people saying things like "it's not all in my head".

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

> exactly is compacted thyroid

There's a bunch of people who don't meet the clinical threshold for inactive thyroid, but who think that thyroid medication would help them. They either take thyroxine, or they take thyroid extract. In England there are a couple of quack doctors who make their living selling nutrient supplements and thyroid extracts to private patients.

(EG Dr Sarah Myhill, who was ordered by the GMC to fix her website)

>Somatoform or somatic symptom disorder is newer and preferred

I'm not sure if that really helps though, as there is still a large stigma (as you'll see in all the CFS patient forums to terms such as FSS).

I think you're right, psychosomatic is a better way to think about it. They are intrinsically linked. I also think microbiota plays a big part, which would be physical. Although apparently some research suggests the brain does have an effect on microbiota. I think from a treatment point of view the physical is often discounted far too much.

I went through 6 years of lifestyle changes and before trying the thyroid meds.

There are a few ways the brain has been proven to affect the gut: stress causes increase in gut motility, and changes in bacteria. I don't think there's much evidence of the gut bacteria affecting the brain, except in the case of an ongoing infection.

I'm curious which lifestyle changes you made. The changes that seem to help with CFS and low cortisol involve increasing activity, not just reducing stress.

Could you define for me "compacted thyroid" and "blue blockers"? I'm not familiar with those terms.

(My wife has CFS.)

Sorry, I meant natural desiccated thyroid. I did mean the blue light blockers. You can get them for $10 from Amazon. I went from mild insomniac to sleeping like a baby.

Do you wear the blue blockers while you sleep, or during the day?

"blue blockers" probably refers to those sunglasses that filter out blue light

I'm unsure if I have something like the fatigue disorder. so where I can check for a test or something?

Is very unlikely I will find a local doctor for it. After 10 years with fatigue all days them only say: Rest more, eat this pill to rest more.

Unfortunately there is no definitive test for CFS. The closest is measuring morning cortisol, or measuring ACTH during a stress test.

Also, rest isn't necessarily the best option. Reducing stress and increasing activity (within limits) is a good start.

mitochondrial dysfunction or dysfunction of genes related to energy metabolism

It's time to make tests for these mainstream. They're basically hidden and so many people with potentially fatal diseases like MELAS are just being thrown around medical facilities, their money being sucked out of them, and eventually either being spit out or an angel of reasoning comes in to help them out.

There's plenty of research showing varying mental illnesses having a "too much oxidative stress" or "not enough ATP" pattern to them.

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