Wired Magazine: The Painful Truth About Long Covid by Alan Levinovitz, 2026

A study by Dr. M Donnoni in 2022:

"We recruited participants primarily through 3 sources: flyers, Facebook ads, and an institution-specific research recruitment website"

No ME doctor would refer his/her patients to participate in a brain retraining study. In fact mine told me it's a 'business' to take your money.

I personally would not apply to FB ads or social media flyers to participate in a brain retraining study.

"We described our study as “evaluating a mind-body approach to reducing COVID Long Haul Syndrome Symptoms.” Participants were screened for their willingness to consider a mind-body approach for treating long COVID and were not considered eligible if they were not open to this type of approach"

I would not be open to this, so their belief system concludes it won't work for me. Excluding participants from a study based on whether they are "open to the approach" introduces selection bias. It limits the sample to a group that is pre-disposed to the intervention, and yielding results that do not accurately represent the broader, real-world target population.
 
Liie said:
I think @Learningandlistening is right in some basic sense here. I think that it is a valid endeavour to try to distinguish people with a psychogenic condition from those with an underlying pathophysiology.

I think ME/CFS advocates have often been dismissive of this because for decades BPS proponents have tried to psychologize the whole condition. I lay the blame mainly with them.
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But, Liie, is it really a valid ethical endeavour to put psychosomatic labels on anyone at this time?

It's fine to try to make research cohorts as 'pure' as possible for whatever condition is being investigated, there are lots of reasons to carefully try to pick out people who have the same condition. But, despite the claims from the FND people that psychosomaticism can somehow be positively identified, it cannot. It is a diagnosis of exclusion and persuasion. The labels are put on people where
1. the pathology can't be identified with the will and knowledge of the clinician, and ,
2. the person fits whatever particular prejudiced profile the clinician has in mind (e.g. female, young, distressed by their symptoms, past history of being given mental illness diagnoses)

It might feel like a valid endeavour to try to put some ground between the patients with biological ME/CFS condition and those weird psychosomatic people over there. But, right now, we have no way to reliably do that. The important search for ME/CFS biomarkers may allow a group to reach the promised land of 'valid medical conditions', but there will still be people left in the swamp of medical ignorance, and some, and probably nearly all, will have a non-psychosomatic condition.
 
@Learningandlistening and others following this thread, you may find this article valuable in understanding the situation for people with ME/CFS and also now those with Long Covid in the UK and with repurcussions in many other countries.

It was published in 2016, but still has relevance to both the scientific research of the biopsychosocial approach, especially the PACE trial, and to how people with ME/CFS and long Covid are viewed and treated by government welfare departments and the insurance industry.

I think it's essential background reading for anyone claiming to have a thorough understanding of attitudes to, and treatment of ME/CFS and LC.

"In the Expectation of Recovery"
MISLEADING MEDICAL RESEARCH AND WELFARE REFORM
by George Faulkner
 
Trish said:
@Learningandlistening and others following this thread, you may find this article valuable in understanding the situation for people with ME/CFS and also now those with Long Covid in the UK and with repurcussions in many other countries.

It was published in 2016, but still has relevance to both the scientific research of the biopsychosocial approach, especially the PACE trial, and to how people with ME/CFS and long Covid are viewed and treated by government welfare departments and the insurance industry.

I think it's essential background reading for anyone claiming to have a thorough understanding of attitudes to, and treatment of ME/CFS and LC.

"In the Expectation of Recovery"
MISLEADING MEDICAL RESEARCH AND WELFARE REFORM
by George Faulkner
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Andy

Thread 'In the Expectation of Recovery, 2016, Faulkner'

New link to report, as the old link no longer works: https://citizen-network.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

This was from last year at some point, but it was recently mentioned again on Facebook and we didn't seem to have a thread for it here (although it is mentioned in at least one other post in another thread).
The attack by the UK Government on disability benefits has only just started to receive mainstream coverage in the wake of the resignation of Iain Duncan Smith. Until recently the Government found that it could reduce...
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Utsikt said:
ScoutB linked one of the blogs from this page in another thread, and I fell down the rabbit hole. If anyone want to know about why it’s difficult to trust the results of even meta analyses, this blog is worth a read:
slatestarcodex.com

The Control Group Is Out Of Control

I. Allan Crossman calls parapsychology the control group for science. That is, in let’s say a drug testing experiment, you give some people the drug and they recover. That doesn’t tell …
slatestarcodex.com
The TL;DR is that it’s almost impossible to remove all confounders so you are very likely to end up with signals that are just noise.
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Trying to set up placebo science would be a logistical nightmare. You’d have to find a phenomenon that definitely doesn’t exist, somehow convince a whole community of scientists across the world that it does, and fund them to study it for a couple of decades without them figuring it out.

Luckily we have a natural experiment in terms of parapsychology – the study of psychic phenomena – which most reasonable people believe don’t exist, but which a community of practicing scientists believes in and publishes papers on all the time.
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That's a perfect description of psychobehavioral ideology, so it's definitely not just parapsychology. Although, frankly, psychosomatic ideology belongs in parapsychology more than in any other discipline. Certainly much more than anything to do with medicine. More than anything, what we have evidence for is that the methods used to study those are completely unfit for purpose, but that's because the methods have a different purpose than developing effective solutions to those problems, in part because they simply avoid the problems, instead working out fake proxy models centered on their own perspective and wants, rather than the needs of patients.

Just like we have an even better demonstration that this placebo stuff is fake: supplements don't work. Obviously if this healing magic were real supplements would work, better than any therapy. But they don't, not unless someone has a significant deficit. They should work specifically, rather than the vague approach in therapy. Knee supplements should work better at knees than at tinnitus. But in fact none of them work for any of that.

The funny thing is how obvious this all is. In real science, say physics, certainty is defined in parts per million of billion of a chance result. In clinical psychology you can lose a coin toss and still call it a win, if it's popular to do that. They are so far apart they don't even belong on the same campus. And it's not because it has to be this way, it's because doing rigorous studies and trials in psychology would almost always yield the same result: no.

Which is the real answer most of the time about anything: no, you're wrong, you certainly did not solve this difficult problem with your easy vibes-based model that is just a copy-paste of previous attempts at the same thing and which had the same conclusion: toss again. In real science this drives the whole thing, finding that rare "oh this is really real". In clinical psychology, and so increasingly in health care, people seem content with the appearance of failure that gets marketed as a success anyway. The lack of ambition is appalling.
 
What strikes me is that in other illnesses there are choices for the patient..

Usually a patient can choose from medicine, psychological support, brain training, alternative treatments, traditional treatments, in combination or isolation. You can have cancer and refuse to treat it in any way, or just have nutritional juices.

With ME/CFS and some LC* we don’t have the same list of options because there isn’t any medicine.

* I believe some LC have incidental known issues which can be treated
 
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