Wired Magazine: The Painful Truth About Long Covid

[dave30th]

I'd also like to raise what has been discussed on X, but is hard to do in short bits--the outing of Professor Stevenson. You've said you didn't out her because you didn't name her. When it is pointed out that she immediately comes up with a search for UVA LAW PROFESSOR LONG COVD, you say it's "absurd" to think that that is identifying her because of course there are so many people with Long Covid, per the stats, that no one could possibly identify her as the culprit trying to destroy science, etc.

These arguments are really ridiculous and so wide off the mark. I have no idea what they're doing at Wired, but this particular violation of privacy is shocking to me. Here are some responses:

1) Apparently no one--and that includes Wired editors and fact-checkers--even bothered to do the quick search that anyone could perform in 2 seconds. That's my assumption, although maybe someone did and was so clueless that they didn't realize what a problem they had. Either way, it is shockingly negligent.

2) The fact that she was a law professor--and female--had no relevance to the issue. There was ZERO need from a story-telling perspective to include those details--which were the ones that make it simple to find her. Why didn't you remove those details?? This is basic journalism. Remove those details--and no one finds her.

3) You say it's absurd to think she would be identified, because so many have LC and aren't open about it, or whatever. Any journalist and certainly everyone at Wired should understand how ridiculous this argument is. It doesn't matter in the end if she wrote it or not. She was easily identifiable, and anyone who found her name in 2 seconds might assume it was her, rightly or wrongly--in this case, rightly. That would obviously expose that person--perhaps someone having nothing to do with the incident--to everyone who might think she's trying to destroy science. And the harassment might even include mention of her kids. I have no idea if she has kids--but as you know, this has come up and I have pushed back against any mention of kids. And now you have exposed her to the same possibiilty. Really

You don't see that as a problem, and that's pretty shocking to me--even though the whole piece is about a climate of fear created by patients. You and Wired have now created a climate of fear for her. And you refuse to recognize that.

4) You have also stood on high moral ground and said it would have been unethical to contact her. Again, that position is nonsense. You didn't have to. This happens all the time in journalism. A doctor tells you about a patient. Of course, no name. You don't just "respect" that the communication--in this case a verbal one--didn't name the person. You ask the doctor if they can ask the person if they're ok talking to you, confidentially or on whatever grounds they want. If yes, no problem. If no, and there are no other ways to reach out, see points 1, 2, 3.

She's a law professor. Your response was, essentially, So she can sue. If Wired refuses to acknowledge the obvious--that you and they breached Professor Stevenson's privacy in an egregious manner, exposed her to potential harassment and harm, and seem to be doubling down--I really hope she does take legal action.

 

[JellyBabyKid]

This is excellent explanation of the patient position;

The Patient Who Isn't Supposed To Exist

"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."

"The community does not reject CBT. I have taught CBT. What it rejects is CBT and graded exercise sold as a cure, premised on the idea that the illness persists because the patient holds a false belief about being sick, and that correcting the belief and pushing through the symptoms will restore function"

 

[Trish]

I can't resist a little diversion into something unrelated that this article reminds me of. I'll put it in a spoiler so as not to distract from the thread topic, though I think it's relevant.

Spoiler: A diversion about approaches to evidence by non scientists.

I have long observed that people who are academics in the arts and social sciences study and write about topics such as diseases and their treatment in a very different way than scientists do.

I got some feel for where this comes from when I did some undergrad study of Arts subjects, having only previously studied maths and sciences. At school I wasn't very good at English lit essays because I though I had to get a 'right answer'. I discovered on the undergrad course that there wasn't a right answer, the point was to make a structured argument of my choosing and to provide relevant quotes to support it.

I was shocked when I wrote an essay in which I argued that Friar Lawrence in Romeo and Juliet was an evil and foolish man, not a wise monk, and the lecturer gave me a very high mark. He said he disagreed profoundly with my argument but I had written it well and given appropriate quotes to support it. This was a revelation to me.

I would have done much better in an Eng Lit exam at school if I had realised that I could say what I liked about a poem so long as I wrote a structured essay in good English and with appropriate quotes. Instead I was afraid I had misunderstood the poem and crossed out my answer.

I have since been able to see that so many articles and research papers by social scientists and arts academics about ME/CFS follow the same pattern. Think up a theory, howevery preposterous, then find and quote 'evidence' to support it. Find ways to dismiss all evidence that contradicts it even if that means misrepresenting or exaggerating that evidence. Find some anecdotes to give 'colour' to the piece, and hey presto, you have a publishable article.

What you don't have is scientific accuracy.

As some decent science researchers have reminded us, if you want to show a scientific theory has validity, don't waste your time on supporting anecdotes. Dig deep in every direction you and your colleagues can think of to try to disprove your hypothesis. Only when you have run out of ideas of ways to disprove and none do so, you can start thinking there may be something in your hypothesis.

There is a gaping chasm between these two approaches.

 

[Peter T]

Undoubtedly some people diagnosed with Long Covid and/or with ME/CFS improve having undertaken some form of brain retraining experience, but similarly others report deterioration becoming much more severe. We even have anecdotes of individuals committing suicide following such interventions. We have no idea why there is this variation and what distinguishes those that fall into the different groups.

What we do know is that there is no reliable experimental evidence supporting the use of brain retraining, that more people seem not to to benefit long term from such interventions than report improvement and that anecdotes of serious harm likely outnumber those of complete recovery.

However proponents of this approach seem not to seriously consider the risks of harm, only the anecdotes of benefit. Surely they have an ethical duty to establish the probabilities of all outcomes before encouraging people to undertake a potentially risky intervention.

 

[Trish]

This is excellent explanation of the patient position;

The Patient Who Isn't Supposed To Exist

"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."

That is such a good article. I hope it will be read and understood.

 

[SNT Gatchaman]

Picking up on a few passages:

Kennedy has a different—and far more controversial—theory. She believes long Covid belongs to a family of chronic conditions that occur when the brain gets stuck in a feedback loop of fight or flight. Pain and fatigue signals, which should play a protective role—pain warns of structural damage, fatigue warns of overexertion—instead go haywire, like a broken smoke alarm. The result is a cascade of symptoms she attributes to nervous system dysfunction. The solution, she argues, is retraining the brain to break the loop. “It’s about how we are designed, our survival brains,” Kennedy said. “And now we have the neuroscience to understand these symptoms. I’m not saying it’s all in their head. I’m not saying it’s their fault.”

The whole point about "fight or flight" is a survival advantage: sympathetic driven cardiovascular / respiratory / neuromuscular priming. It suppresses pain and fatigue signals: sometimes giving us extreme stories of eg people running from danger not even realising their ankle is badly broken until they're safe. So this explanation involving "survival brains" doesn't really sound relevant or even coherent.

Initially, Larson said he “knew too much biology” to believe any of it would work. When Kennedy encouraged him to try simple breathing techniques, his symptoms flared up. He swore at her and accused her of violating his boundaries. But after a few months, he could use the bathroom with a walker, eat real food, and talk for as long as he wanted. As of this writing he can shower on his own and manage a thousand steps in a day. Recovery has been slow, with ups and downs, but he and Kennedy are confident the improvements will continue. “Thank God for her,” Larson said. It’s a refrain in our conversations. Thank God.

1000 steps a day and now able to talk, and shower on his own. Great — but hardly *recovery* by any sensible definition (PACE excluded obvs) — that's still pretty severely affected in anybody else's book. And this was after months. I had a similar improvement trajectory with no "retraining the brain to break the loop".

The study of cognitive symptoms and interventions suffers from the same dynamic. Long Covid can cause life-changing, verifiable cognitive impairments. But self-reports of those impairments often don’t match what objective testing finds, as was the case in the neurological arm of the NIH long Covid trial. “We found that only 16 percent of our sample had actual impairments at baseline,” said Jacqueline Becker, a neuropsychologist at the Icahn School of Medicine who helped lead the trial.

The point is that the instruments being used are designed to detect and quantify dementia. They are not appropriate for this indication, just as they are not an IQ test for the Whitehose incumbent.

A recent JAMA analysis of studies using broad definitions of long Covid, for instance, showed that people with a documented prior infection suffered from long Covid at slightly lower rates than people without one.

We've discussed the problem of the broad definition above. But you could see how this observation could be explained with many of the now known to be 40% acutely asymptomatic Covid infections not having a documented infection — and they might even be at increased risk for Long Covid.


Quoting your genetics/statistics colleague, earlier in the thread.

What they find is pretty interesting: they identify a single gene/locus associated with long COVID and the same genetic variant was previously associated with COVID severity. Surprisingly (to me at least) they also see the highest genetic correlation between long COVID and depression, insomnia, and risk taking. I’m speculating, but this would be consistent with long COVID being a phenomenon of (1) more severe COVID + (2) psychological/behavioral factors.

If you're keen on listening to patient testimony, here's my anecdote in contradiction to this speculation. I'm in my mid 50s and I'm a senior medical specialist. I was fit and healthy, with zero psychological/behavioural factors and favourable socio-demographic ones in my background. No previous episodes of depression, slept like a baby, and was the exact opposite of a risk taker, either in the OR or as I started flight school. I had an asymptomatic Covid infection. I continued to exercise at the gym, ride my bike and sail my yacht, slowly and progressively less over months until I eventually fell off a cliff to severe and bedbound. Now soon to be six years later I have improved to housebound (up to 1500 steps on a good day) but I am in no way recovered and dependent on my wife for many basic household matters.

Early on I dismissed two episodes of severe crushing/gripping retrosternal chest pain, that by rights should have seen me in an ambulance — because those symptoms in context did not make sense as an acute coronary event. I was comfortable with the small chance I might have been fatally wrong, but I wasn't, each resolved after 20 minutes and they have never recurred. So I don't think I can reasonably be accused of hypochondriasis or catastrophising.

My HR can still spike to 130+ just standing up. Yet sitting I can play "high adrenaline" team video games with my Canadian buddies every weekend and not rise higher than low 60s. (To be clear it was some years before this become even remotely possible.)

Despite this disease, I remain one of the most optimistic and relaxed people you might meet. I am still a valued and useful working member of our hospital's team, even if I haven't set foot in that hospital in five years.

What brain retraining could I possibly undergo?

Noting genetic risk, two years after me my niece, now in her early 30s, developed LC after her third/fourth mild Covid infection. The previous infections had resolved without issue. She's a lawyer and was a gym and dance instructor and has been able to do none of those things in the subsequent three years.

I have some colleagues and friends with this disease also. One was a very keen runner and was advised to exercise her way back to health, though needed no encouragement as running was her life. She died in February this year leaving behind three devastated children and husband. That is The Painful Truth About Long Covid.

 

[Hoopoe]

The Kennedy/Larson story sounds like the patient experiencing an improvement due to a fluctuating course of the illness and attributing it to the last thing he tried. The fluctuating nature of the illness is even emphasized in the text.

A strange part of the story is that the patient accuses the clinician of violating his boundaries but then continues to follow their treatment. That is not how people usually behave, especially not someone who is profoundy ill and undoubtedly very sensitive to stress.

 

[marshtacky]

That is The Painful Truth About Long Covid.

I wish I could like this twice!

I realize that the title is out of your control— but really when you look at it, you kind of have to admit that it shows exactly how a casual reader would perceive the conclusion of your article. (or your editor happens to like deceptive click bait— but in my experience wired titles aren’t usually ragebait). If that tile and subtitle aren’t what you intended to convey— there’s a problem.

 

[Jonathan Edwards]

The whole point about "fight or flight" is a survival advantage: sympathetic driven cardiovascular / respiratory / neuromuscular priming. It suppresses pain and fatigue signals:

Exactly, why quote theories that do not even get the basics of physiology right? This theory is 'controversial' in much the same sense that recommending cod liver oil to lubricate joints is controversial. It is as old as Sir Edmund Hilary's cheese sandwich and makes no biological sense. But of course there is no shortage of people who like to believe things.

 

[marshtacky]

often the BPS people are terrible about this.

Perhaps that would have been worth mentioning in the article. Especially in the light of the evidence @Utsikt and others have presented that BPS/psychosomatic treatments and explanations are the dominant paradigm and in fact, the official paradigm of entire countries.

If I was a casual reader of your article, I would come away believing:

There’s this great new treatment idea that makes a lot of intuitive sense— brain retraining!

People who try it report miraculous recoveries!

It can be done for a low cost!

It’s completely harmless— I mean how could talking to your brain and exercising hurt anybody? There are no negative anecdotes in the article. Nobody seems to get worse with it.

But patients don’t like it— they feel stigmatized and they are pathologically afraid of exercise.

Therefore, this promising new idea has been hidden, unable to be researched and developed.


Suppose I come away from this article with all of those beliefs. I might very well go to my friend or family member who has long Covid and say look! Look at this potentially miraculous treatment. You have to try it! you’d be crazy not to!

And when that sick patient says— no, it doesn’t work like that you don’t understand, there are risks. I’m not sure I fit into that group that that intervention treats, if it treats anyone at all—

Well, I would assume that my friend or family member was just showing that pathological fear you mentioned. Was just feeling stubborn. Not understanding that I wasn’t blaming them.

And if they continue to push back, I might throw up my hands and say “ well you can’t get better if you don’t want to!”

I might decide to withdraw my support; give up on a friendship. If I’m a caregiver, perhaps I stop bringing them food and water to encourage them to get out of bed more often. I start intentionally exposing them to loud sounds and bright lights, to “re habituate” them to the real world

This stuff breaks up friends and families. It causes real harm to patients. That’s why you’re getting so much pushback imo— not because we don’t want to talk about psychology, but because your article does not present a balanced and accurate view of the evidence, allowing that average reader to come away with mistaken, and potentially harmful, ideas.

 

[Grigor]

@Learningandlistening There can be many reasons why people may improve even when treatments are ineffective. Current studies into brain retraining show thus far that they are.

Natural recovery is one of the reasons why people may improve, but this publication touches on others as well.

It's well meant I guess if you want to explore the reasons why some still improve after say brain retraining, but I'm not sure if we need to be reinventing that wheel again.

 

[Lou B Lou]

Perhaps that would have been worth mentioning in the article. Especially in the light of the evidence @Utsikt and others have presented that BPS/psychosomatic treatments and explanations are the dominant paradigm and in fact, the official paradigm of entire countries.

If I was a casual reader of your article, I would come away believing:

There’s this great new treatment idea that makes a lot of intuitive sense— brain retraining!

People who try it report miraculous recoveries!

It can be done for a low cost!

It’s completely harmless— I mean how could talking to your brain and exercising hurt anybody? There are no negative anecdotes in the article. Nobody seems to get worse with it.

But patients don’t like it— they feel stigmatized and they are pathologically afraid of exercise.

Therefore, this promising new idea has been hidden, unable to be researched and developed.


Suppose I come away from this article with all of those beliefs. I might very well go to my friend or family member who has long Covid and say look! Look at this potentially miraculous treatment. You have to try it! you’d be crazy not to!

And when that sick patient says— no, it doesn’t work like that you don’t understand, there are risks. I’m not sure I fit into that group that that intervention treats, if it treats anyone at all—

Well, I would assume that my friend or family member was just showing that pathological fear you mentioned. Was just feeling stubborn. Not understanding that I wasn’t blaming them.

And if they continue to push back, I might throw up my hands and say “ well you can’t get better if you don’t want to!”

I might decide to withdraw my support; give up on a friendship. If I’m a caregiver, perhaps I stop bringing them food and water to encourage them to get out of bed more often. I start intentionally exposing them to loud sounds and bright lights, to “re habituate” them to the real world

This stuff breaks up friends and families. It causes real harm to patients. That’s why you’re getting so much pushback imo— not because we don’t want to talk about psychology, but because your article does not present a balanced and accurate view of the evidence, allowing that average reader to come away with mistaken, and potentially harmful, ideas.

THIS
.

 

[MrMagoo]

I have given up trying to make valid criticisms, since the author seems to have come here to explain his thinking, not to learn. He even told us at the start that he would not be engaging with criticisms of the substance of his article, if I recall correctly. I am addressing him in the third person here, as he has expressed his intention not to interact further with me.

I have a set of questions about sources of evidence which he will probably choose not to answer. That is his prerogative.

My questions:

What made you decide to focus a large part of the article and of your time interviewing people on a few individuals who claim to have been cured of Long Covid by Brain Training? How did you recruit them? Did you make an effort to find and interview people who found brain training led to worsening, or who thought they had recovered, only to relapse? What did you do to verify the thousands of online stories of recovery you claim to have seen. Can you provide evidence of them and the veracity of their stories including long term followup? Did you attempt any actual research such as following a cohort brain training recruits before, during and after with follow up of at least 2 years? Or did you simply seek anecdotes from a few to make your article more emotive.

Edit to add: in case any of the people who recovered who are quoted in the article are concerned by critiques here, I want to assure them that I am not criticising or disbelieving them. I am glad for them that they have recovered and hope they don't relapse. I am agnostic about the treatment and whether it could directly cause recovery. I await some well run clinical trials with objective and long term recovery outcome measures and a control group with an equally enticing and engaging control intervention to create equivalent expectation in patients and therapists.

Certainly not to listen.
As the old saying goes, you have two ears and one mouth.

 

[Hutan]

@Learningandlistening - thanks for being here, hopefully you will be here again.

Many members have already explained that there is no good evidence that the treatments you are keen on actually work. The NICE evidence team (the NICE staff) looked and reported that. Some members have mentioned studies like Magenta - I really encourage you to read that study. Even though it was designed and presented by people who wanted to believe in the therapies, it is clear that the brain retraining therapies did not work. Worse than that, the interventions caused harm, with a significant proportion of the children in the study who made it to followup clearly deteriorating.

And, it's not just physical harm. Other members have talked about the impact of a brain training paradigm on family relationships ('you didn't try hard enough to be well') and noted that patients who do try hard and fail to be well can feel devastated and inadequate. One of the young people in the Magenta trial ended up in hospital with suicide ideation, with the researchers acknowledging that it was plausible that the study caused it. That was a trial of children, for goodness sake, with presumably all of the safeguards, all of the monitoring, and yet it still caused despair.

It is a fact that that there have been hundreds, probably thousands of studies aiming to fix people with ME/CFS by making them think and behave better. Every week we see more here, all with similar flaws. Each researcher sees to think that they have the vital tweak or the new way of selecting the participants that will finally produce some evidence of benefit. We've seen studies of yoga, of swimming, of instruction on thinking better in so many ways. We've seen individual therapy, group therapy, online therapy... We've seen researchers trying to sneak the exercise in, in a similar way to how parents grate zucchini into the spaghetti bolognese sauce, gamifying the movement, giving out virtual reality headsets, taking people off on pleasant walks in the forest...

It is deeply frustrating to see more money and more time wasted on flawed studies that only ever produce, at best, recorded benefits in the range of what we would expect from a placebo. Typically, there's no more than a 10% benefit, something hovering around the minimal clinical improvement mark, with a p value of something like 0.0495 Despite the many flaws in patient selection, patient retention, subjective reports, cherry picking and lack of followup. It boggles my mind to hear that you think this sort of research is being suppressed.

You seem to be saying that we should ignore the fact that this vast body of flawed clinical evidence shows that the interventions are, at best, ineffective.

You seem to be saying that we need to instead focus on the anecdotal reports of improvement? You seem to be saying 'these improvements are true, and these are due to brain retraining '. There are a number of ways the improvements may not be true and that the improvements may not be due to brain retraining.

First, I want to note that we don't see significant numbers of people recovering from these methods. Not in the trials, not on forums, not in charity groups. Not in the people we come across. The ones who do recover usually seem to have recovered in the initial period when natural recovery is the norm. They seem to be very loud and often seem likely to benefit financially from promotion of the treatment that they say helped them. There are organisations that seem to have been created explicitly to amplify the stories of these people.

Second, yes, natural recovery is actually really common early on. Check out the Dubbo study, a prospective study tracking people after three illnesses that commonly trigger post-infection fatigue syndromes, found that the majority of people who have post-viral fatigue syndrome symptoms at 3 months, or even 6 months, recover. Someone is not special if they recover from ME/CFS in the first two years after onset. Most people do, without any special intervention. Perhaps the ME/CFS community does not make that clear enough.

Third, improvements may not truly be significant, people may change their expectations from life and of their body. We've seen quite a lot of this. The person who claims to be recovered but who has now retired. The person who claims to be recovered but has 'realised' the benefits of work-life balance, giving up their busy career and now working part-time from home. The young person who gives up sports.

Fourth, there are fluctuations and the impact of increased activity can take time to show itself. For example, my son went back to school after a year off. He was excited and happy to be back. The first week went great. At the end of the first month he was looking ill but still happy and telling people things were good. Over the next months, he had more time off sick, he made excuses, he just had to get his fitness back, there's a flu going around.. Three months after starting back at school and following a game of football, he crashed in a big way and was sleeping 20 hours a day, barely leaving his bed. It took a year for him to get back to the health he had before starting back at school.

Fifth, people can convince themselves and others for a while. My son has had periods of saying that he's well, in fact of saying that he never was sick, of taking up boxing training... People don't want to be sick. I got a doctor to write a note saying I was recovered so that I could start back on some contracted work that I had postponed. I convinced the client that I was healthy again, I sort of convinced myself. ..I did not complete the work. Part of the therapies can be the promotion of positive thinking, so the person may not pay attention to the clear signs of deterioration.

Sixth, perhaps people do have other illnesses, especially if they have been given the extremely vague label of Long Covid. Some of the health conditions will naturally resolve. But, we no trial evidence that the brain retraining interventions help people with an ME/CFS diagnosis, (or even just a CFS diagnosis, PEM or no PEM).


@Learningandlistening, it might be useful to consider how you came to write the article, who introduced you to the people claiming to have recovered.

 

[Braganca]

I just want to be very clear about this: You are saying that the explanation for every single person who has experienced sustained remission with any intervention that failed a double-blinded trial (so basically all of them), or with mind-body therapies...all of these, because placebos don't work and neither do interventions that fail in trials...all of these people are experiencing coincidental-with-treatment spontaneous long-lasting natural remissions? All of them? So many long-lasting natural coincidental remissions, in all these case control trials, in the placebo arm of blinded trials, in all these anecdotes, but that's what they must be, because no therapy has worked in a blinded trial and placebos don't work either? I mean, this might be the beating heart of our disagreement right here. To me, that position is outlandish. I think the more likely explanation is that at least a subset of people have symptoms that respond well, long-term, to something that was happening with the intervention that sparked their remission/recovery. If we can identify them, then we've got a subset who will respond well to an intervention that exists already. And that is medical progress. Edit: And if the treatment they responded well to is a pharmaceutical that doesn't work in a blinded trial, then we know even more about what they are responding to.

Most people don’t magically wake up better from an intervention. They improve gradually over months or years. Usually within the first year or two of illness but sometimes later. Why? Bc most people recover from post viral fatigue syndrome and only a small percentage stay sick with me/cfs. Recovery is the expected path. And usually at all points in the first five years of illness, people are trying an intervention of some sort, trying to get better. That’s why so many people report so many varied ways that “cure MECFS”. All the money spent on long Covid which should have produced answers — yet afaik, we still don’t know how many people recover in what expected timeframe, and what is the delineation between PVFS and MECFS.

 

[dave30th]

You seem to be saying that we should ignore the fact that this vast body of flawed clinical evidence shows that the interventions are, at best, ineffective.

Yes, that seems to be what the message is. And stop being so nitpicky when my experts says they're ok, so I really don't have to decide whether it was OK for the PACE authors to have some participants recovered at baseline on key variables. Alan, I asked the Lancet and the PACE authors multiple times to please send me other examples in the literature of studies in which people were already recovered at baseline on key variables. I didn't hear back. Do you know of any such studies? Do you really, really believe that you should be agnostic about that?? Really? Come on, man!

 

[MrMagoo]

I was wondering about the GDPR (as it is in the UK) implications of the article, but I’m not familiar with the USA equivalent, although as Dave 30th says, the person involved is a lawyer so could probably sue.

I think in terms of irony, outing someone in an article which is claiming that debate around that persons illness and how it’s debated, what might or might not help is toxic, doesn’t feel ironic as much as wilful and possibly deliberate, IMO.
I don’t know academia or science but I know internet pile ons when I see them.

 

[Mij]

Daily fluctuations (overheating during summer months, taking a hot bath, saunas, season changes- allergies, menopause et).

Relapses (flares) from reactivating infections, viral/vertigo.

Remissions (feeling symptoms-free for weeks). Able to do some form of exercise within my limits, non aerobic-type more beneficial for me.

Progression hasn't been the case for me. I pace and avoided delayed PEM for years. I've had ME/CFS for 35 years, this occurs without interventions.

A percentage of patients have been diagnosed with ME/CFS who later discovered they had something entirely different, they refuse to let go of the ME/CFS dx after surgery, drugs, natural post-viral syndrome recovery et.

@Learningandlistening this is the hodgepodge of patients you are interacting and drawing conclusions from with people on the internet.

 

[rvallee]

My point is that the broader community that both has and advocates for these often overlapping diagnoses has created socio-cultural conditions that make it very hard for clinicians, scientists, and the general public to engage in dispassionate, objective research or discussion

Actually, we don't care one bit about any of this stuff, it has nothing to do with us. To us it's not about culture, it's our entire freaking lies. Millions of us. To everyone but us it's about culture. A "culture war", one might say. One that isn't even about culture, but about politics and ideology being imposed on millions of people who explicitly dissent because none of this makes any sense.

When systems fail this many people this badly and categorically refuse to change, there is always going to be a lot of criticism. It's not just normal, it's a good thing. HIV deniers get a lot of criticism, deservedly. If the AIDS crisis had happened a few decades earlier, making it impossible to easily identify HIV, alternative models might have gained dominance, in the same way as psychobehavioral pseudoscience has with us. There would have been a lot of criticism. This is pretty much the same thing. A medical issue has become a culture war hot topic. But since we are such a weak constituency, we can easily be crushed with no effort.

Your whole argument about "believing the patients" is so wildly dishonorable, but I know it's popular and you didn't come up with it. In the first year or so of Long Covid, online communities were sharing all sorts of supplements stacks, vowing this is what helped them recover. There is simply no good evidence behind the rehabilitation models. We would all be ecstatic if they did, this is something you are clearly very confused about. None of this is theoretical for us.

The patient communities eventually gave up on those supplements stacks. Because none of this works. Because the stakes are too high for us to stick to things that don't work. It wasn't valid to listen to those stories any more than it's valid to listen to stories of people who were healed by a swinging jacket, or this weird-ass "mind-body" woo.

 

[Concentric_Spiral]

Picking up on a few passages:


The whole point about "fight or flight" is a survival advantage: sympathetic driven cardiovascular / respiratory / neuromuscular priming. It suppresses pain and fatigue signals: sometimes giving us extreme stories of eg people running from danger not even realising their ankle is badly broken until they're safe. So this explanation involving "survival brains" doesn't really sound relevant or even coherent.



1000 steps a day and now able to talk, and shower on his own. Great — but hardly *recovery* by any sensible definition (PACE excluded obvs) — that's still pretty severely affected in anybody else's book. And this was after months. I had a similar improvement trajectory with no "retraining the brain to break the loop".



The point is that the instruments being used are designed to detect and quantify dementia. They are not appropriate for this indication, just as they are not an IQ test for the Whitehose incumbent.



We've discussed the problem of the broad definition above. But you could see how this observation could be explained with many of the now known to be 40% acutely asymptomatic Covid infections not having a documented infection — and they might even be at increased risk for Long Covid.


Quoting your genetics/statistics colleague, earlier in the thread.


If you're keen on listening to patient testimony, here's my anecdote in contradiction to this speculation. I'm in my mid 50s and I'm a senior medical specialist. I was fit and healthy, with zero psychological/behavioural factors and favourable socio-demographic ones in my background. No previous episodes of depression, slept like a baby, and was the exact opposite of a risk taker, either in the OR or as I started flight school. I had an asymptomatic Covid infection. I continued to exercise at the gym, ride my bike and sail my yacht, slowly and progressively less over months until I eventually fell off a cliff to severe and bedbound. Now soon to be six years later I have improved to housebound (up to 1500 steps on a good day) but I am in no way recovered and dependent on my wife for many basic household matters.

Early on I dismissed two episodes of severe crushing/gripping retrosternal chest pain, that by rights should have seen me in an ambulance — because those symptoms in context did not make sense as an acute coronary event. I was comfortable with the small chance I might have been fatally wrong, but I wasn't, each resolved after 20 minutes and they have never recurred. So I don't think I can reasonably be accused of hypochondriasis or catastrophising.

My HR can still spike to 130+ just standing up. Yet sitting I can play "high adrenaline" team video games with my Canadian buddies every weekend and not rise higher than low 60s. (To be clear it was some years before this become even remotely possible.)

Despite this disease, I remain one of the most optimistic and relaxed people you might meet. I am still a valued and useful working member of our hospital's team, even if I haven't set foot in that hospital in five years.

What brain retraining could I possibly undergo?

Noting genetic risk, two years after me my niece, now in her early 30s, developed LC after her third/fourth mild Covid infection. The previous infections had resolved without issue. She's a lawyer and was a gym and dance instructor and has been able to do none of those things in the subsequent three years.

I have some colleagues and friends with this disease also. One was a very keen runner and was advised to exercise her way back to health, though needed no encouragement as running was her life. She died in February this year leaving behind three devastated children and husband. That is The Painful Truth About Long Covid.

Exactly. Thanks for sharing your experience.