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Comment by StevenWaterman | Hacker News Reader

My wife got covid in march. She wasn't hospitalised, but we did have to call an ambulance multiple times. She 'recovered' and was fine for about a week before developing most of these symptoms.

The most infuriating part is how little help there is from medical professionals. She's now 4 months in with what can only be seen as a chronic health problem, but the only medical advice doctors will give her is to rest.

After she recovered and came down with the post-covid symptoms, we went to a doctor whose best guess was that she had somehow got another viral infection (despite not leaving the house). My only hope is that as these symptoms become more widespread and well-known, long-term support is made available.

It's incredibly frustrating that we've known about these issues for a couple of months (and so have many others, old.reddit.com/r/covid19positive was full of similar stories in march). Meanwhile it seems like medical professionals are only just starting to consider that it can affect you for more than a couple of weeks.

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> The most infuriating part is how little help there is from medical professionals (...) the only medical advice doctors will give her is to rest

I don't think it's bad will, they simply have no idea what to do. Just see what the research looks like: "they" are still busy categorising symptoms. Understanding of this disease is still in early stages. It will improve.

Mind boggling how just a few months ago all my friends were throwing the 0.x% CFR numbers for our age group, implying that there is nothing to be afraid of. There's much so more complexity and many unknown unknowns in health!

Yeah absolutely, they're doing their best with the information available to them. That's why I'm hopeful that all the recent news around persistent symptoms will improve awareness and make more resources available. It's a nightmare situation all-round and I have full sympathy for the situation doctors are in.

Another problem is that most of the world is still too busy trying (and failing) to control the spread of infection. They don't have much attention to spare for people who aren't deemed infectious anymore.

On top of that, downplaying the severity of covid is critical to the arguments of those who want this to be over for political, economic, or any reasons.

The focus by many has been deaths. Mortality rate can be spun to make covid seem not so bad.

If we start talking about the percentage of people whose lives are significantly affected, we create a much bigger percentage. If you’re trying to paint the opposite picture, it’s not in your interest to acknowledge or increase awareness of that percentage.

well tell that to the cancer, diabetes and high blood pressure ,depression victims who don't get diagnosed in time or havent gotten the proper treatment. Tell that to the people who's lifework have been destroyed and I could go on with people being significantly affected. Its not that simple.

The suggestion that everyone who is pro- aggressive disease containment has not had their life turned upside down by the global pandemic is lacks logic. Shutdowns are necessary to contain the virus, and the economic damage done from not containing the virus is far worse than the alternative. We know this because we have data.

There are multiple countries that were hit very hard in the first wave, and then managed to contain the virus and accelerate their economies after; France, Spain and Italy are all great examples. IIUC, France now has 3.6% unemployment. They had strict lockdowns, followed by mask wearing, social distancing, and contact tracing. The same tactics are working for NYC in the US.

We do ourselves a great disservice to act as if virus containment is bad because it destroys economies. No, the virus destroys economies, and containment allows us to continue once mitigated. That’s what the data clearly shows.

Shutdown is not a good strategy:

https://unherd.com/thepost/oxford-epidemiologists-suppressio...

It is interesting that these doctors in the UK are claiming that tactics that have already worked elsewhere don’t actually work, while their country continues to suffer a massive outbreak of the virus.

On the other hand, here is a study showing two countries that have made great strides in containing the virus, after massive waves and deaths, and did so with a harsh lockdown https://www.sciencedirect.com/science/article/pii/S004896972...

That paper doesn't actually shows that its the lockdown that responsible for the decline. Its the classic correlation does not necessarily mean causation.

Good luck with the "doing nothing" strategy then?

Who says doing nothing ? There are lot of thing that can be done : vaccine research, method of treatment improvement, promote hygiene, increase medical capacity (if needed), etc

> promote hygiene

You mean like wearing masks? Because that's apparently a "political opinion" right now

The mental gymnastics is incredible.

The economy is going down the shitter no matter what. Might as well make it temporary instead of permanent (which is exactly what's gonna happen if "1%" of the entire world dies, and many more get severely injured due to COVID complications).

No it's not going to be permanent if 1% of the worlds population dies not sure where you are getting that idea from.

First of all why the strawman? I was responding to a post that claimed there were no argument against.

You can't compare the entire US with a country. The EU have had roughly as many deaths as the US per capita. That's the correct comparison. Some countries like some states did well other didn't some areas in states did well others didn't.

To claim that the tactics are working for NYC is absurd. NYC have had the highest amount of dead, we are still mostly on lockdown here and very few things are open.

I have had two melanomas and so I get checked 4-6 times a year. So far I have been tested in january and not since.

I am not sure what data you are talking about and I am pretty sure this aint over yet.

Furthermore I would challenge you to find single country who would do lockdowns again if this happened.

They locked down because they were unprepared (it's their job to be prepared) not because it was the right thing to do.

Obviously you should do what you feel comfortable with, but now is a good time to go the doctor and get that checked out. The numbers are pretty low and stable for the moment. And FWIW, I had surgery last week so I'm not giving advice that I wouldn't follow myself.

I don't have a choice. My dermatologist have not been available for "non-essential" situations.

That's unfortunate. Try a different dermatologist? I've gone to flatiron dermatology in the past, and they're solid.

I am on Sloan Memorial with one of the best in the world as I have more than a thousand moles. So I can't really do that.

>The EU have had roughly as many deaths as the US per capita

I don't believe this is true, and probably hasn't been for a while. Talking points tend to outlive changing conditions.

Europe has had 270-310 per million, depending on whether you include Russia, while the US is up to 433. And the gap continues to widen because every day twice the number of people are dying in the US compared to all of Europe.

Conversely whatever is being done clearly is working for NYC and has been long enough for the death rate to follow the new case rate down. It doesn't make a whole lot of sense to say that because of all the people who died, the efforts that stopped people dying didn't work. There were ten deaths yesterday in Manhattan+Brooklyn+Bronx+Staten Island+Queens. Miami-Dade county had almost triple. But that underestimates what's coming, because new cases were over 3200 (in a day) compared to about 300 in NYC. People have steadfastly refused to believe that new cases become new deaths over time, but you can see the numbers going up.

https://www.worldometers.info/coronavirus/

You can calculate it yourself.

Europe (exl Russia) is around 176000

Every diseases could cause inexplainable long term damage as well. Yes there is so much complexity and many unknowns in health, that doesn't mean we should be afraid of it.

Good news is for majority of the case they have full recovery.

Do you have a source for how many have a "full" recovery vs how many have medium to long term complications? To my knowledge this isn't something being tracked.

You should research Chronic Fatigue Syndrome / Myalgic encephalomyelitis.

The medical community, from my experience, does not handle this type of diagnosis well.

I’ve experienced post-viral fatigue symptoms that lasted well over 8 months, and almost all doctors I visited (ranging from primary care to neurologists) suggested simply rest and/or believed it was depression related (even though I have never suffered from depression before).

I hope your wife gets better. Remission from these symptoms is possible, but sadly, I don’t think you’ll get more information out of the doctors.

> The medical community, from my experience, does not handle this type of diagnosis well.

I've read some time ago that Stanford scientists developed a blood test. It'll be harder for docs to ignore once there's a proper diagnostic tool.

Yeah, in its initial study, the nanoneedle had a 100% specificity and selectivity, and according to Ron Davis - main author - the results have held up as they've increased the number of tested people. That said it might also give a positive result for other illnesses. Hopefully a follow-up will be published soon.

Be wary of anything that claims a 100% sensitivity and specificity. It usually indicates the wrong gold standard or poor methods.

Did you ever find a treatment other than rest?

Not an expert, but I suspect that if there were a treatment that makes a clear difference, the whole disease+treatment combo would be well known by most doctors and the treatment would be widely suggested.

I could be wrong though: are there common instances of diseases with solid cures or treatments that many doctors generally misdiagnose or believe lack treatments?

I wouldn't be surprised in either direction.

A huge number of healthcare systems around the world still use graded exercise therapy (and CBT) and that is known to actively hurt patients with the condition, so I don't think that is sure at all. You would have thought the basis of medicine where first do no harm might be their first instinct but it really isn't.

I'm a medical professional that had a post- viral syndrome following the flu. In retrospect, even though I didn't realise it at the time, it may have lasted for over a year. It easily fit the definition of depression, but less so the negative symptoms. Could also be classed as stress or anxiety. It went away when I cancelled all my commitments (at the time my director of studies said I was on a course to fail, and advised I handed over other responsibilities in the run up to the exams to other people). Turned out it was overkill and I had plenty of free time. During this time I returned to my normal self, and I'm more self-aware of the issue now.

In ME/CFS one of the treatments is 'graded exercise therapy'. Given my experience, I should have done something like this earlier on.

Just wait until the professionals start referring to psychological help. Chronic health problems from previous infections do not exist in modern medicine. Besides there's very little professional help to get. I believe we can reasonably expect this to develop into massive amounts of people unable to work due to ME/CFS. The effects may last for life. There are courses where they tell you to lie to yourself and say you're healthy ("lightning process"). The breaking of personal boundaries can unfortunately for sufferers lead to permanent health and capacity reduction, so take with big grains of salt wether it's worth the risk.

What may work, if it's ME/CFS-like, is to find personal limitations and avoid too much toll, ie. less or no stressful exercise. Then find ways to live healthier and gently up those boundaries without exertion, avoiding possible permanent regressions for life. Of course also seek professional medical help, but always evaluate what kind of help one is getting where and what the consequences are.

Life can and should be joyful and one should shed fear and anger, but be sceptical of claims (even this one), and do due R&D.

Since they classed the first known outbreak of ME as mass hysteria its been constant gaslighting for sufferers for 70 odd years. Even now this article is written as if ME/CFS doesn't exist, as if doctors in the UK are completely baffled, but we know what this is and it will have the same hallmark Post Exertional Malaise but its not even mentioned in the article. The NHS doesn't recognise the international definition of the disease and continues to harm patients that show up with it every day. The Chinese after SARS didn't have issues calling it ME/CFS, around 10% of the SARs sufferers still suffer with ME/CFS to this day, they had papers calling it what it was very early on. The NHS however is going with "no clue".

We do know a lot more than we knew 2 years ago. We know the condition swells the brain in the central and front regions and that explains the memory problems, headaches and coordination issues. We know that sufferers have virus RNA in their body and in their brains, so its possible its just an ongoing infection but it also appears to be partially replicated in cells. We know that patients cells produce down to about 25% of the energy that a normal persons cells do in their mitochondria and it is at least partially to do with the Calcium ion channel being turned off with a gene switch. A sufferers plasma will shut down someone else's cell too so its probably a signal of some description in the immune system soup. What we don't know is if any of this is the root cause of the condition and there is frighteningly small amounts of research being done for a disease that can be as debilitating as MS.

We know a lot about how its not Psychological now and research is getting funded at last. But its been 70 years of "its all in your head", nothing about this condition paints doctors and researchers at all in a good light.

So sorry to hear about your wife. This is an incredibly scary disease for a lot of reasons. Adding the frustration of a chronic condition to that is not what anyone needs.

The basic problem is: What do you do about a chronic condition for which there is no proven treatment? I have a few people in my life with one such condition or another. There are three responses, mostly unhelpful.

The most common response is to essentially suggest things at random. Both rest and (generic) exercise are common suggestions. This can make the patient happy, but it's often actively harmful -- obviously, both rest and exercise won't help the same thing, unless it's a specific exercise chosen with the condition in mind.

The other common response is to not suggest anything, and basically try to get the patient to go away. If you're lucky, they'll try to sympathize, but mostly you'll just get brushed off. This makes the patient feel bad, but at least it won't actively make the condition worse.

The response you'll get if you're really lucky, is that they'll refer you to participate in a study of some kind. This is lucky because it's very high variance: it could kill you, but it also could significantly improve things. Obviously that risk isn't for everyone, but it's lucky to even have the choice.

Unfortunately, without a proven treatment, there isn't a lot else for doctors to do.

> Unfortunately, without a proven treatment, there isn't a lot else for doctors to do.

Figure out a treatment? Or at least establish what is actually wrong?

I'm fairly certain that people are indeed working on a treatment, but until it's ready what do you propose?

> Figure out a treatment?

That'd be the "refer you to participate in a study" part. Your average medical practitioner does not do research.

> Or at least establish what is actually wrong?

How? Based on what? That's the whole point for something like this; the medical consensus does not know how to diagnose it.

> Your average medical practitioner does not do research.

Depends on how you look at doing research. If I keep going back to my GP with various ailments we’ll keep trying things until we either figure out what is wrong and fix it, or we find some kind of medicinal dose that makes the pain/discomfort manageable.

I don’t think that falls under ‘suggest things at random’, ‘make the patient go away’ or ‘refer to a study’.

My sense is medicine has for some time neglected chronic symptoms from acute viral infection. During my lifetime, chronic fatigue syndrome went from a psychological malady confined to malingerers and depressed women to a physical malady associated with infection... but maybe also malingerers / depressed women.

Which was where things stood when I contracted mononucleosis in my 40s. Weeks / months long fatigue and multi-organ involvement is characteristic of mono. In my case as the other symptoms slowly abated the fatigue remained, lingering over six months with some intervening flare-ups of fever etc.

I learned that that this progression is considerably more common in older patients. Beyond that, little was known and my doctors reacted with a shrug and symptom management.

There was no know cause to these symptoms. And seemingly to me considerably less medical interest.

Perhaps Covid will yield a greater focus and fundamental understanding of chronic conditions resulting from viruses. However, given the contrast between the prevalence of CFS and attention paid... and the medical reaction to Lyme Disease I’m not entirely optimistic.

I didn't know what to think of Chronic Fatigue Syndrome, but in the one specific instance of diagnosis I know of first hand, it preceded a diagnosis of terminal pancreatic cancer a bit later. Made me wonder if there could be a viral factor or something that leads to immune system problems that gradually develop over years.

I have the exact same experience.

It took about 100 days before my wife could start working again, and she is still experiencing chest pain, breathlessness and fatigue (at first symptoms + 115 days).

She was told to endure and rest. What a great plan.

There is no other known treatment. Or basically no known treatment.

I'm not a doctor, but I would argue against rest.

By that I mean, endure ... sure, but focus hopefully on calisthenics, breathing exercises, yoga, taking supplemental vitamins and improving physical fitness.

Typically post surgery doctors recommend PT ... I'm just saying start some regular PT post illness -- not "rest".

You’ve pretty much exactly described someone I know who caught the virus at the end of March as well. Approximately 40 years old, and healthy, and currently is exhausted from climbing one flight of stairs. She finally started leaving the house just a couple weeks ago. It’s been a very very gradual improvement over time, so I suspect that eventually it will go away. She’s been getting some physical therapy to help get her body moving and gradually become more active.

I don't think we have any non-trivial treatments that are safe and effective enough to use on non-hospitalized folks. Until a patient's condition gets bad enough to justify risky/unpleasant interventions, rest and hydration seem like the proper prescription.

Sorry for your experience. Because I am also the husband of a sick wife, I can relate to you. My own feelings swing between hope and despair and a dread of future is emerging.

Realistically, what do you expect from medical professionals?

I certainly don't expect a magic bullet that solves everything, but I would like it to be treated like any other chronic illness. A single point of contact to help track and manage her symptoms, a care plan to ease her back into life with the expectation that some symptoms will be here forever, and the hope that they won't.

> The most infuriating part is how little help there is from medical professionals. She's now 4 months in with what can only be seen as a chronic health problem, but the only medical advice doctors will give her is to rest.

They're still trying to understand what's best.

You could try looking into the type of rehab that some sepsis patients go through, because that's an emerging treatment in the UK. See for example this comment from a UK doctor: https://twitter.com/SepsisUK/status/1283316617615683584?s=20

Here's more information for people looking for help with long term recovery from covid or sepsis, from the UK Sepsis Trust.

https://www.youtube.com/user/TheUKSepsisTrust/videos

StevenWaterman , 2 questions:

- I assume that you yourself never became sick during this period, despite being in close proximity to her?

-Did you wife have other preexisting conditions?

I was essentially asymptomatic. I had a tiny bit of vertigo and stomach problems for a couple of days, but I only noticed when looking back.

She had incredibly mild asthma but didn't need an inhaler (and does now). Other than that, nothing.

Post viral syndrome is a thing and may be a covid thing too.

When the answer is not simple or require new thinking your local gp doctors are not the group to ask.

Based on my humble experience, I would suggest her to take the walks in the open air. Start from small, then gradually increase. Once she reaches at least 3 km per day, the walking activities should fully rejuvenate her ability to breathe.

This should totally work out. The moderate activities and safe relaxed walks do the miracles for the usual post-pneumonia as well.

Note of caution: avoid walking in masks. A mask impairs the natural ventilation and you would not get the recovery effect. This means you should keep a healthy distance and avoid getting into crowded places.

> Once she reaches at least 3 km per day, the walking activities should fully rejuvenate her ability to breathe.

And you base that on what? Seems completely arbitrary. You don't know any details of her issues.

Experimentation. Medicine is my life-long interest.

Yes, the exact details are missing. But I gave a solid general advice. Not sure everybody can grasp it being blinded by their own cultural expectations (which are not 100% true after all).

How many double blind experiments did you do with a control group with/without masks? O2 sat levels from any tests I've seen aren't affected by masks, so I'm more than a bit skeptical here.

No tests, sorry. I would gladly make some statistically significant experiments, but I am not in professional medicine. I am more math/computer/physics guy by trade.

From math/physics perspective: mask has a porous structure and stands in a way of the air. So it is clearly adds some resistance to overcome with an additional suction.

Healthy people can provide that suction, so their O2 remains untouched.

Not-so-healthy people may hit the physical limit of their suction and this is the situation when adding an additional barrier (the mask) will lead to O2 decrease.

Buy a $30 O2 saturation monitor.

Put it on your finger.

Wear the mask.

See with your own eyes that you are wrong.

>Wear the mask

You forgot the pneumonia and O2 deficit conditions. You ignored the heat conditions that may make the mask wet and thus increase its air resistance.

Even if I register O2 drop in my finger then I would need control groups to make the experiment statistically significant.

Personal medical measurements and observations have little to no scientific significance. But the ability to calculate the outcome may have big impact in life vs death situations.

I mean, it is physics and logic 1-2-3. Google "wet mask air resistance". What you get? Right, nada.

Again, anecdotally. But - I am a lifelong severe asthmatic. As a kid I was prevented from all running activity. It was the 80s. At 23 I decided, against all advice, to start running. It is now 25 years later and I have run 360 days a year all that time. I still have asthma, but it's just this annoying thing, like hands that grip my lungs a bit. When I get the flu ( I had a terrible flu in January this year ) I do not stop running if I have low/no fever. Running for me is just a walk to others as I do it every day. Since Covid started, so I don't wheeze and sneeze and terrify people and become a social pariah, I take one puff Budesonide, one singulair and a reactine every day. I now have zero asthma and my nasal rhinitis is 70% reduced. (no sniffles just one closed passage as I've had my whole life). I am not recommending anything but building a relationship between my experience, yours and the discussion about this pandemic flu. What is missing from all of these anecdotes is context. This is mine. I am an extremely disciplined runner, I stretch every day ( I have scoliosis which requires it so I remain mostly pain free), I run a Decolinization Think Tank and I live in the Western World and am white and currently upper middle class. I grew up in a trailer with violent neglectful parents and so I also was forced to go through a decade of self work and radical subjectivity was the product . This is my subjectivity, my context and it is directly related to how I recover from disease - or do not. We need numbers and statistics and context.

Totally agree. I am too small of an expert to provide a statically representative numbers. Medicine is my hobby, not a trade by day.

Instead, I'm using a more algebraic, inter-disciplinary approach to medicine trying to infer the outcomes in symbolic form, just like the algebra does. Sorry for non-conventional approach, I clearly understand it goes against the usual expectations of the day. To make things more weird, I do some practice too, including the light surgeries.

>I take one puff Budesonide, one singulair and a reactine every day

In this way you shape the immune response to not attack your tissues. This reduces (or even eliminates) the manifestations of asthma, but does not heal the root cause of it.

Physical activities probably tend to reduce the asthma manifestations too.

Regarding possible healing solution: it is a tough situation as the true reasons of this illness lie inside the genetic code. And this code is hard to change, especially for a grown-up organism (currently it is thought as impossible, though prominent things like CRISP do exist). In this way, asthma is considered impossible to cure.

Regarding COVID: it is not a genetic illness, so it is possible to cure.

So this is my context. Pure algebra with bits of physics, chemistry and biology.

> Medicine is my hobby

Now there's a red flag if I ever saw one!

> I'm using a more algebraic, inter-disciplinary approach to medicine trying to infer the outcomes in symbolic form, just like the algebra does. Sorry for non-conventional approach, I clearly understand it goes against the usual expectations of the day.

WTF?

>WTF?

Symbolic computation is a way to look at the problem domain from a clear analytical standpoint. For example, Noam Chomsky did that for linguistics.

Does such approach constitute a red flag in specific area of human knowledge? Depends on who you ask. In case of Chomsky, his work allowed us to have software compilers and automatic translators between spoken and written languages.

Was he a mad non-conventional scientist? Maybe. But I think he was a prominent innovator cut from above who gave us a great reminder: you cannot undercut or overcome math and algebra. Even in seemingly non-related disciplines such as linguistics or medicine.

> I am too small of an expert to provide a statically representative numbers. Medicine is my hobby, not a trade by day.

In other words, you are not an expert. Be honest with yourself and stop giving people unsolicited medical advice. Please.

Experts don't just do their own studies. They also read studies performed by others, which they base their recommendations on, and have on hand to support their advice.

I'm not a medical expert. But I have my share of successes.

The only reason I voiced a suggestion is because I read desperation behind OP's lines. That's it. A moment of personal weakness caused by overwhelming human compassion.

It's a generalized advice for a general person after suspected pneumonia. It is a good solid recommendation you would get from a practicing doctor, or even from any post-pneumonia patient who experienced shortage of breath.

Please note how helpful it might be in life vs death situations when the list of other options is just empty.

I presume that OP's wife condition is a form of post-pneumonia pulmonary fibrosis. The common wisdom of crowds in western countries suggests that there is no known cure.

However if you care enough to intersect the lingual and cultural barriers, you will soon find out that the effective cures do exist. They come in form of physical rehabilitation: breathing and physical exercises are the main parts of it.

In other words: moving your body will do a good favor for the tissues of your lungs. Open air and unobstructed airflow are big bonuses as well.

Of course you can still deny everything I say. You can still be selfishly fulfilled by your comfortable ignorance.

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