Editorial: A research agenda for post-COVID-19 fatigue, 2022, Wessely, Knoop et al

I don't even feel threatened by this because BPS LC research is almost totally ignored. The BPS lobby is a tiny fringe group, rehashing the same old arguments nobody believes. LC research and media coverage casts it as 100% biological. People are blaming LC on autoimmunity, not deconditioning. It's obvious that the BPS model is spent. When I see papers like this, I laugh they're BPS's last gasps, at least regarding LC.

Unfortunately, BPS ME research is still somewhat believed. But the fact that BPS utterly failed to gain ground in a new field is highly encouraging for us too.
 
Research may be ignored. But If GPs are still telling people with long covid they have anxiety and or encouraging activity and if people with LC are being seen at fatigue clinics based on CBT approach, which all seems to be the case from tweets I’ve seen the treatment people receive is still very much influenced by this agenda.
 
RedFox said:
I get the opposite impression. I see LC and ME organizations working together to each other's benefit.
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I very much hope you are right - I, after all, have a vested interest in you being right/MECFS & long covid community (+Lyme?) working together.

I'd tried to contact a few prominent people (with long covid) and (long covid) representative groups in the UK - never got a reply. I had noticed someone who posts here had been successful in contacting the long covid community via social media - good to see & well done.
 
RedFox said:
I don't even feel threatened by this because BPS LC research is almost totally ignored. The BPS lobby is a tiny fringe group, rehashing the same old arguments nobody believes. LC research and media coverage casts it as 100% biological. People are blaming LC on autoimmunity, not deconditioning. It's obvious that the BPS model is spent. When I see papers like this, I laugh they're BPS's last gasps, at least regarding LC.

Unfortunately, BPS ME research is still somewhat believed. But the fact that BPS utterly failed to gain ground in a new field is highly encouraging for us too.
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I hope you are right. I agree that we certainly have made major critical gains in recent years, and momentum is with us of late.

But any celebration is a little premature. The BPS club is not going down without the most ferocious of fights to cling onto their ill-gotten power and glory and income.
 
RedFox said:
BPS LC research is almost totally ignored
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Check out Crawely's SMILE trial of Lightning Process - the idea of doing a trial on pseudo science seems surreal/bizarre. Anyhow, it was published in the BMJ i.e. after the outcomes were switched from objective (return to school) to subjective (response to questionnaires in an unblinded study). The BMJ had told a House of Commons Committee that it did not allow outcome switching yet it subsequently published Crawley's study i.e. after the outcome switching.
Check out this post - https://www.s4me.info/threads/post-covid-19-syndrome-and-the-potential-benefits-of-exercise-2021-jimeno-almazán-et-al.20964/#post-350680
If you are in the long covid community then prepare for a reiteration of the scams perpetrated on the ME/FS community.
Also, check out the Royal College's [physicians and psychiatry] response to the NICE Guideline review.

So government funding - the BPS folks have collected much of the funding in ME/CFS, support from BMJ, Royal College's [physicians and psychiatry] and their hangers on ---- to say that "BPS LC research is almost totally ignored" seems a tad premature.

Check out Brian Hughes blogs - they generally illustrate how you're being scammed*. I vaguely recall a heading along the lines: apart from the [EDIT - lack of blinding] subjective outcome criteria (questionnaires), the outcome switching (think of what Crawley did to get a seeming positive answer) --- it's not that bad. Looking at one of the blog headlines** reminds me that Crawley et al are funded by the Government so maybe focus on that rather than railing against those who generate their income/prestige by scamming people who are ill, like Crawley and those who support unevidenced treatments/research like the Royal College's [physicians and psychiatry]

*https://thesciencebit.net/2021/02/1...ck-of-control-group-the-study-wasnt-that-bad/
**https://thesciencebit.net/2021/03/0...acy-nuts-or-the-journalists-who-dismiss-them/

RedFox said:
BPS lobby is a tiny fringe group, rehashing the same old arguments nobody believes
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See comments above.

RedFox said:
People are blaming LC on autoimmunity
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If there's one thing that makes the quacker of folks like Crawley look not entirely unacceptable then it may be unfounded claims of autoimmunity --- seems to be the answer to the meaning of diseases we don't yet understand --- autoimmunity.

@Snow Leopard has, from memory, expressed frustration at researchers continually looking in the same place i.e. when previous studies turned up nothing - autoantibodies/autoimmunity probably deserve a prize in that category. E.g. rituximab failed in ME/CFS yet autoantibodies are a relatively prominent topic.

In my (uneducated opinion) all is not lost - GWAS seems to be a useful tool to discover the underlying cause of a poorly understood disease. I'm hopeful that the next generation of autoantibody tests will be better - check out Aaron Ring in Yale* - think he's looking at long covid ---. We've recently seen a successful genetic treatment for haemophilia ----.

Good luck and I think you'll find a lot of useful folks here (EDIT - on this site/Science 4 ME).
[*https://medicine.yale.edu/profile/aaron_ring/]
 
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Trial By Error: GET/CBT Ideologues Revive 1991 Oxford Criteria as Core Definition for Long Covid Research

"The Collaborative on Fatigue Following Infection, or COFFI, was formed in 2015 to promote the theories and treatment approaches embodied in the now-discredited and arguably fraudulent PACE trial and related research. In a nutshell, PACE and related research promoted the notion that the symptoms of patients with the clinical entity or entities variously called chronic fatigue syndrome, myalgic encephalomyelitis, ME/CFS, CFS/ME and other names could all be attributed to the effects of being physically deconditioned and of being afflicted with “unhelpful beliefs” about having an organic illness.

The recommended treatments were graded exercise therapy (GET) to get patients “reconditioned” and/or a specific form of cognitive behavior therapy (CBT) designed to alleviate them of their purportedly unhelpful beliefs. Since then, however, there has been a world-wide revulsion against PACE’s “unacceptable methodological lapses” (per 100+ international experts who signed Virology Blog’s 2018 letter to The Lancet), and both the US Centers for Disease Control and the UK’s National Center for Health and Care Excellence have flatly rejected its findings. These and related developments have dealt some serious blows to the credibility of the GET/CBT strategy.

COFFI has been pushing back. In a paper published last June called “A research agenda for post-COVID-19 fatigue” published in the Journal of Psychosomatic Research, members of the group referenced Professor Michael Sharpe’s 1991 case definition for chronic fatigue syndrome, which was abandoned long ago by most investigators in this field. Adopting that definition, they have rechristened the relevant clinical entity as “post-infective fatigue syndrome.” This rebranding of thirty-year-old notions seems to be a sly way of seeking to ignore and maneuver around the fact that this approach has already been rejected in the ME/CFS domain."

https://www.virology.ws/2023/03/12/...a-as-core-definition-for-long-covid-research/
 
from one perspective, it's a clever maneuver to try to resuscitate the Oxford criteria in this back-handed way. but it also feels like a desperation move or what is referred to as a "hail Mary pass" in our national concussion-causing celebrations called football. Could bringing back a 32-year-old definition that has been widely rejected really work?
 
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