Long Covid - where is the psychosomatics ?

Hutan said:
It certainly is bad, but I expect there are quite a few disasters in medicine competing for the title.
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Those disasters did not go on for decades at the rabid insistence of everyone involved long after it was obvious, though.

That's the difference, most such disasters are unfortunate events that usually end up in hard lessons learned. This is the one same mistake going back well over a century, on repeat and very deliberate. None of this is accidental, this is a fully manufactured disaster that continued for decades long after it was obvious.

There can be some comparisons for example with how Thalidomide was still sold in poor countries by corrupt pharmaceutical companies, but this was the work of immoral executives and investors, not professionals.

But it really has to be framed as one long continuing disaster, the ME chapter is just one of many. Truly making it by a very wide margin the worst disaster at the hand of professionals, probably in the history of our species. The whole point of experts is to do things right, it's very rare to fail even 1% of 1% of that.

People sometimes die as a result of engineering disasters, but never because engineers insisted on the thing that caused the disaster, for decades after disasters keep occurring regularly. It just doesn't happen. Only in business, politics, and, evidently, medicine can anyone even have the chance to screw up at this scale.
 
ME/CFS Skeptic said:
It seems that psychosomatic researchers, even those that aren't directly involved in ME/CFS research, are starting to see ME/CFS advocacy as a threat to their profession and influence.
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Perhaps more accurate to say "It seems that psychosomatic researchers, even those that aren't directly involved in ME/CFS research, are starting to see that the insistence of most ME/CFS patients on properly conducted research and on objective evidence, at a time when the research establishments are accepting that patient communities should have a real voice in how their disease is investigated, as a threat to their profession and influence, as it highlights the inadequacies in what they offer."
 
ME/CFS Skeptic said:
It seems that psychosomatic researchers, even those that aren't directly involved in ME/CFS research, are starting to see ME/CFS advocacy as a threat to their profession and influence.
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Maybe a concern, but the smugness of this letter suggests they could not possibly see us as a threat, their opinion of us is far too low for that. This is a conquest paper, they own us and are saying it plainly, will not be letting go.

It's normal that more will become involved as the field is shifting from the primary symptom-based constructs to making it fully generic, which appears to be the German model. I predict that the generic stuff about "neural connections" or whatever will become the central concept swallowing basically everything, from us to everything they see as psychosomatic (so MUS and FND) along with depression, anxiety, burnout and the rest, based on the most generic biopsychosocial construct.

We basically went through decades where they succeeded at defining specific syndromes from a primary symptom and pretending they're treating that, but it's clearly moving to the common construct of: a complex interaction of biological (for theater), psychological and social (also for theater). No need for details here. Decades of pretending to do work here, an endless jobs program for what are basically no-show jobs, they barely have to pretend to work and get paid anyway.

Everything will be the same, it's just the framing and the moving onto the network/connection imbalance that will simply become the new BS explanation replacing the chemical imbalance. As far as most are concerned ME, chronic fatigue and depression are the same thing.

Somehow LC has actually strengthened it all. Even though the model failed miserably, is widely criticized as worthless by anyone who hasn't recovered. But so many have recovered that it drowns out everything and the research simply isn't good enough to overcome the tsunami of quick and cheap BS they can produce.

Getting hard not to lose hope seeing this. We never stood a chance. Fighting the government is way easier than this, it's been done before. Not this, no one's ever fought medicine and won.
 
Andy said:
Perhaps more accurate to say "It seems that psychosomatic researchers, even those that aren't directly involved in ME/CFS research, are starting to see that the insistence of most ME/CFS patients on properly conducted research and on objective evidence, at a time when the research establishments are accepting that patient communities should have a real voice in how their disease is investigated, as a threat to their profession and influence, as it highlights the inadequacies in what they offer."
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That's a lot wordier though. But accurate. I think stressing that we want properly conducted research above anything else is something that bears repeating over and over until it sticks. It's not a certain treatment we're against, it's being mistreated, ignored and having our disease not properly investigated that's the problem. I've happily done a course of CBT/GET with the thought it would cure me as have many others, when it didn't and it turned out to be built on some of the worst research-practices imaginable I as many others got angry. Not because they psychologized my disease but because they were crap at their job at best, simply lying at worst with all the harms that come with it.
 
rvallee said:
Getting hard not to lose hope seeing this. We never stood a chance. Fighting the government is way easier than this, it's been done before. Not this, no one's ever fought medicine and won.
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There's an additional aspect though: civil war. LC/ME is now affecting healthcare workers disproportionately. Many in medicine are being forced to wake up to this travesty of incompetent overreach by psychological medicine.
 
Sean said:
Psych has its place, but not the one it currently claims.
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Does it though? So many syndromes, personality disorders etc. that have been linked back to biological abnormalities over the decades. I wonder what would really still stand as the domain of psychiatrists/psychologists if we were to scrutinize everything that went into the different DSM's. Is there anything that you should without a shadow of a doubt see a psychologist for? Genuine question btw, because I don't know if anything is proven to be something only a psychologist could fix.
 
It's a pity that we don't have a screenshot of Per Fink's university (?) website where he listed the JNNP piece apparently before it actually had been through the review process:

SNT Gatchaman said:
Eight major errors in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis
White, P., Abbey, S., Angus, B., Ball, HA., Buchwald, D., Burness, C., Carson, A., Chalder, T., Clauw, DJ., Coebergh, JA., David, A., Dworetzky, BA., Edwards, MJ., Espay, AJ., Etherington, J. & Fink, P.
2022, (Accepted/In press) In: Journal of Neurology Neurosurgery and Psychiatry.

I can't see it published yet but it's referenced on Per Fink's CV.
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(Link to Per Fink's CV doesn't work anymore)
 
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