Has the arrival of Long Covid strengthened or weakened the influence of psychosomatic medicine? Discussion thread

I don’t know if this is the proper heading under which this posting should be made, but either way, I unequivocally believe that Long Covid has only strengthened psychosomatic medicine’s stranglehold on the scientific community. There will be a heightened resolve and fervor for these therapies and the scholarship of figures like Sharpe, Carson, etc. The Long Covid patients who feel the solidarity of an Eric Topol is some veritable trump card are sadly credulous. The next step will be a major GET trial. That’s literally all that’s left

 

If what you say is true we may as well all give up. No more campaigning, no more s4me. I can't face the future you keep describing. I suppose it is a possibility, but I feel that it's sort of the same as people who even ten years ago were throwing their hands up in despair about climate change and saying 'theres nothing we can do we're all doomed'. If that is truly the case fine but I think the real question is what can be done to prevent the future you describe.

 

There's many ways to assess the current situation and I've reached the opposite conclusion. Long Covid hasn't heightened interest BPS. In reaction to long Covid, people have brought BPS ideology into the light of day and mocked it. Just this February, David Putrino was on national TV here saying, "But what we understand very clearly is that this is not a psychological illness. This is not a psychosomatic illness." In their long Covid guidance, the WHO says PEM is a contraindication for exercise therapy.

Psychology Today published a big article on a psychological aspect of long Covid. Was it anxiety? Focusing on symptoms? Nope, being gaslit by doctors. When the NIH proposed long Covid exercise trials, we got an article in Nature warning against it. Long Covid has only accelerated CBT/GET's slow slide into the dustbin of medical history.

 

My personal opinion is that the ME/CFS community has achieved a lot, particularly in the past 5 years, that the Long Covid community will face many similar challenges to those we experienced, but that their progress will be that much easier due to the progress that we have made in highlighting the lack of value in the work of, and beliefs held by, the psychosomatic 'research' community.

One of the key things I believe is that we far more aware of them and of what they are up to. This might well make it look like they are being more successful than they were previously but I don't think this is the case.

Crossposted with RedFox.

 

And I hope you’re ultimately correct, as it will exponentially improve my well being! I participate in research studies, correspond with scientists, and involve myself in patient advocacy, not exactly the behavior of some misanthrope who has given up. Resources like this forum are terrific for coordinating response and building scientific understanding of where we currently are in ME research. Equally important is engagement outside of a bubble. It’s not just BPS sycophants, but the opinion of rank and file physicians and commentators that offer a window into public opinion regarding the disease. I’ve interpreted it one way, and others are obviously entitled to reach a contrary conclusion.

 

On the LC Facebook group I belong to there is little recognition or understanding of the problems faced by people with ME previously. When faced with a service provided by the NHS or a private entity the level of trust they display is high. My posts telling them of my own personal experience or common problems talked about on ME groups are not taken seriously.

I can see the Psychosomatic groups being strengthened by this influx of new people who are choosing to ignore the lessons learned from ME.

 

Yes, I agree. To the extent the psychosomatics are strengthening their position empirically, that’s laughable. I do think they’ve refined their delivery, much as salespeople often do. When I first got sick, I was lambasted by the physicians I saw: anxious, depressed, concerned about being a successful father, deconditioned, etc. Now, the FND movement has done an exceptional job pitching a brain disorder at the interface of neurology and psychiatry. Complex mechanisms, brain misfiring, interoception, Bayesian networks, etc. To the newly minted patients, this would understandably sound earnest and scientific. That’s why the NICE guidelines and roundtable are so important. When these ideas are litigated in a fair forum, they disintegrate.

 

That's a matter of time. A lot of new ME patients drank the koolaid too on psychological interventions in the past years and it's been very hard to shift them from those positions too. A lot of us here might have gone through something similar. The outrage comes later when large groups of LC patients at best aren't helped and at worst are dead or lying in darkened rooms. It's going to be very very rough on a lot of those people but it's how it went and probably still is going with new ME patients, why should they be different.

 

Has the arrival of Long Covid strengthened or weakened the influence of psychosomatic medicine ? There's a lot to unpack in that question, a many to many problem of systems analysis.

Long Covid isn't one thing - as a label it's a short hand for a raft of consequences of being infected by a novel virus but those consequences are still far from being adequately epidemiologically modelled, let alone demand enumerated at a service level. Equally psychosomatic medicine isn't one thing, the term encompasses multiple conceptions and practices. Across all the combinations of post acute sequelae of Covid and all the departments operating under a psychosomatic banner there will undoubtedly be some service/specialism/departmental development, some which may even be appropriate - the spectrum of PASC is so broad that it's almost inevitable that some patients will benefit from a psychosomatic informed clinical practice - we need to remember PASC is not ME/CFS although some PASC might be ME/CFS.

I think the current situation is still too messy to predict anything much. As a term Long Covid is fast losing any utility and PASC which have specialism specific characteristics are likely to inform 'post covid syndrome' practices in each relevant specialism - rheumatology, gastroenterology, respiratory medicine, neurology, gerontology etc. There will of course be a whole batch of orphan 'MUS' left over for the psychs to ply their trade, but we really don't know the scale of that and much of what has been recorded in the epidemiology (such as it is) may simply fade into the background of population illness, especially if the dominant age cohorts tend into the 50 plus. Medicine is a volume business and psychs in their various guises may lose out to other specialisms plus a general acceptance that age = disability.

 

I don't think it changed anything. There are more psychosomatic services, but probably little more than the natural course. We are in the golden age of medical pseudoscience, especially everything psychosomatic, and most of this was going to happen anyway. The massive expansion of the MUS/conversion disorder ideology was going to happen anyway, it's clearly an obsessive need.

There is more research, a lot more data is being generated. It's not lead to anything yet, but it probably balanced out. Anyone who believed in this before still does, and a tiny number now understand that it's completely wrong, but are too few to make any difference. Meanwhile a comparable number are foolish enough to believe that their superior mindset is why they recovered, or whatever. It probably balances out.

Politically, I think that psychosomatics is more desirable than ever. But it was already maxed out, there is no giving 110% here, 100% is the max and it already was desired beyond reason. Scientifically it looks worse and worse, but since everything is decided by politics and ideology, it doesn't really matter that much, science and evidence are irrelevant here. Until science ends all this absurd nonsense, but we aren't there yet, this is clearly the hardest problem medicine has ever faced, and they're bringing zero effort or motivation to it.

All progress ultimately is technology. We still don't have the technology to end this nightmarish tradition. So until then the best we could do is reduce the harm, and we have done as best as is possible. There's just very little that can be done when a monopolistic profession refuses to accept reality. It's an issue of power, and as patients we still have absolutely zero power over our own future.

I still think this mostly gets resolved with AI. Any competent AI would not accept the garbage standards needed to keep the ideology alive. This has always been a human problem, and like most problems caused by humans, the problem has to be eliminated entirely, because the human failure isn't going away.

 

I think it's a dubbeltje op z'n kant, a dime on its side as the dutch expression goes.

The arrival of Long Covid both strengthened and weakened psychosomatic medicine, and I find it difficult to say on which side the coin will fall.

Spoiler: Some elaboration on why I think that is.

It weakened it because it will be scientifically untenable as a massive influx of patients (with a clear pathogen at the starting point of their illness) that gets studied while simultaneously research into ME, Lyme, MS, Alzheimer etc. is bringing up overlapping finds as well, exposes pm for the sham it is. Historically one of the key things that pulls diseases from the psychosomatic clutches is understanding the actual physical mechanism and treatment. It's still a wait, but I expect the coming years to see various research finds pulled together in a clear picture, and to bring treatments that, if not a cure, do bring improvement, and I think there's a good chance Long Covid will accelerate that process. Combine that with a bigger spotlight on psychosomatic medicine's claims and writings, patients having better access to science and connections, and a better understanding of how science denial works, and it's theoretically difficult to see how a simplistic and badly substantiated view, that looks suspiciously much like disableism wearing a glossy pseudo-scientific coat, stays upright. And indeed, like Redfox explains in post #3, you can see the shift happening that scientists, media and journals are picking up on the gaping discrepancy between simplistic psychosomatic theory for Long Covid and scientific and lived reality.


BUT

it also looks like Long Covid has been a big present for the movement. It arrived exactly at the right time: when the foundation their empire is built on (ME/CS) was starting to get pulled away from them, just when they were accelerating the move to expland their influence even further, to all medical disease. Also, these times are ideal for them: we live in a post truth era, which makes them a fish in water as they have already been doing it since decades before. A need for governments and government-affiliated health care institutes to avoid accountability for the effects of letting Sars-Cov-2 continuously spread mostly unhindered through the population, and for health insurance companies to avoid having to spend money on a wave of new patients, makes psychosomatic explanations extra attractive, and that is on top of psychosomatics already having been heavily and deliberately woven into medical health care to serve financial interests.

And then there's indeed ukxrmv's good point that

New patients have been living in an able-bodied bubble where they never had to deal with the reality of living with a severe chronic illness. They cannot fathom that medics and authority figures will disregard and misinterpret their illness as it runs contrary to everything they've been taught and told, plus the last decades they've been fed ableism in all sorts of ways. And the facade of the psychosomatic medicine building is that what they do in there is built on concern and care for the patients. Psychosomatic medicine might therefore be attractive to try as it promises an easy solution in line with convenient and previously-held beliefs about illness, and it's being done by people who say they care about you and advised by a trusted authority figure. It's a boost for pm, but I have my doubts about how much or lengthy it will be as it doesn't hold up in practise.

In theory psychosomatic medicine should get a hard and possibly fatal blow from the arrival of Long Covid, with expanding scientific understanding making it near-impossible to deny, and the accelerating spread of that knowledge among institutes and professionals; but the interests of powerful people are so big that I foresee a lot of sabotage, and attention and money flowing towards psychosomatic medicine as they are the group that can keep up a convenient narrative.

In The Netherlands for example, the government looks determined to walk that path.

 

What I wonder about is, let's say we find a biomarker for ME and we move on from the BPS-crowd. Do we completely lose interest in them? Is it Brian Hughes with the stories of how this happened again and again? With all the people affected by the ideology you'd think we'd be finding people fighting our corner left, right and center. Not so.

It's pretty clear that after us they'll try to find new victims, will they be stopped? If history is anything to go by most of us will stop to care, won't have the time or energy to do something about it or will just simply die with the passing of time. At least, that's what I imagine happened previously and why they managed to go on with a new disease but business as usual.

 

I'm guessing one area that the BPS guys will get another foothold is that a certain percentage of people with ongoing Long Covid symptoms don't fit the MECFS category (I've seen the figure of 50% a few times). So the BPS guys can argue that maybe their approach isn't appropriate for the half who fit the MECFS there's still the other half for which BPS research and treatments may be appropriate. That argument may unfortunately attract funding for BPS research and treatments.

 

The main psych proponents have based their whole careers on it so that is why they are so resistant, they are in high places and also teach at med schools their biased views.
Maybe for others it could be embarrassing to say ,whoops I have been giving my patients the wrong advice, maybe putting them in bed for decades, all these years.

 

I can't help but think that in due course, some of those with LC that also satisfy an ME diagnosis, will be doing their darnedest to go with the latter. Seeing just in the last few days some Drs online doubling down on the need to perform exercise studies doesn't bode well for LC patients as we have seen from the dark history of ME and that's without the psychs. At least with the revised NICE GL, in the UK at least, we have some, shall we say, protection now - even if it's taking a while to be implemented as we would like.

 

For me the cause of these recent developments in the dutch ZonMw project for biomedical research into ME/CFS most probably falls in this category.