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

[It's M.E. Linda]

The acronym generation machine keeps churning them out.

Denigrating acronym, yet again, as a quick check of an online dictionary confirmed my thought that the only words close to 'PIF' is 'piffle' or 'piffling' meaning nonsense, trivial, unimportant.

Screams gaslighting again.

I've just double-checked my icd-10 books and done a quick search re: SNOMED (which I don't use) and no, it's not a term in either, nor one I've ever come across...

I found this sentence absurd, "Fatigue is one of the main symptoms of PASC"...

Thank you Emma, you are a star!

So this begs the question: how are these people allowed to make up a name of a condition for a study paper and appoint themselves the experts in this previously unknown "illness"?

PwME display numerous symptoms, in any combination of a very long list.
Would we consider "fatigue" to even be the most common, or the most debilitating, of all the symptoms? It possibly depends how long you have been disabled and which combination of symptoms you have to manage every day.

 

[Milo]

Would we consider "fatigue" to even be the most common, or the most debilitating, of all the symptoms?

It has long been discussed. It is used by our international experts. It is used in research questionnaire to quantify our level of illness. Polls on this forum has shown fatigue may not be the #1feature of the illness.

Fatigue is a general term used to all kinds of sauces, and its meaning fluctuates and can be misinterpreted. It has been a great disservice to have had our disease named after that one symptom.

 

[Sly Saint]

Previous research has shown that psychosocial factors, such as distressing life events, may predispose to developing PIFS, whereas symptoms of depression or anxiety, cognitive factors (i.e., illness beliefs) and behavioural factors (i.e., changes in activity patterns) may act as perpetuating factors [6,17]. It is therefore unfortunate that there seems to be opposition to research into psychosocial predisposing and perpetuating factors that play a role in PIFS.

hmm

 

[Mithriel]

I may be wrong, but it looks like there was a subcategory of the Oxford Criteria which allowed that some people felt they had an infection before they became fatigued. Forgotten who it was, sorry, but someone said it was probably because the people who were researching ME and saw it was often caused by infection, often from outbreaks were using that fact to deny it was psychological.

Basically something that they never mentioned for thirty years but now see as useful to roll out. (I had never heard of it)

 

[Caroline Struthers]

(a patient's self-report is unlikely to be sufficiently reliable).

oh right. but i thought self-report was absolutely fine, if patients reported they felt better after CBT or GET...!!

 

[dave30th]

@dave30th @Caroline Struthers , one that will probably be of interest to you both.

Yes, and Knoop is already doing this with his CBT to prevent severe fatigue in long Covid

 

[tornandfrayed]

Another worrying aspect is that they want to dive in early in the disease progression with their exercise/CBT research. At the very point where people have a reasonable chance of recovery, they'll get their hands on them to ensure life-long disability.

 

[Andy]

Trial By Error: The Usual Suspects Promote a Psychosocial “Research Agenda” for Long Covid

"In what could be described as a form of epistemic land grab, core members of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades have proposed a “research agenda” for long Covid that reflects the premises of their crumbling treatment paradigm for ME/CFS. This is not surprising. It has been clear from the early reports of continuing symptoms after Covid-19 that this powerful cabal would seek to colonize the field and devour a large share of the long Covid funding pie.

“A research agenda for post-COVID-19 fatigue,” published as an editorial by the Journal of Psychosomatic Research, is from a group known as the Collaborative on Fatigue Following Infection (COFFI). The round-up of authors includes some of the usual suspects in this domain of inquiry, such as Rona Moss-Morris, Andrew Lloyd, Simon Wessely, Vegard Wyller, and Hans Knoop. (I have written about shoddy work conducted by each of these authors.) This paper represents the most recent step in the effort to extend their discredited psycho-behavioral strategy for ME/CFS patients to those suffering from long Covid."

https://www.virology.ws/2022/02/27/...-psychosocial-research-agenda-for-long-covid/

 

[Snowdrop]

And this bit:

The “research agenda” authors make an oblique but peevish reference to the international rebellion against the treatments they have championed, declaring it “unfortunate” that there is opposition to their research strategy. Given the lack of evidence for their claims, the “unfortunate” aspect of this whole affair is that these authors and other self-important pooh-bahs have amassed so much influence and control over the public health purse strings. They have promised government agencies and other funders that their interventions can get people back to work and health—yet their trials routinely fail to document such results.

All my bold. Say whatever about any of it on either side. What are the real world reality results? The result should be that people are well and able to go back to life. Not just answer questions to solicit a positive response. This has not happened.

Their treatment has been around for decades. It has routinely failed to deliver.

What is up in the demented minds of the people who OK funding of this over and over and over expecting a different result?

At this moment, thanks to Covid this failure will be viewed as more catastrophic than it already was.

 

[SNT Gatchaman]

Studies on post-COVID-19 fatigue conducted in Europe have reported remarkably higher prevalence rates of fatigue compared to studies from China. This raises questions about possible cultural differences in the experience and/or reporting of fatigue.

Or... how about fundamental genetic differences? You know, like how the vast majority of humans have EBV, but SE Asian populations have very much higher EBV-associated nasopharyngeal carcinoma (NPC).

From The Global Landscape of EBV-Associated Tumors

The link between EBV and the undifferentiated form of NPC was stumbled upon by chance in 1966 and was the first indication that the virus' oncogenic potential was not confined to the B cell system. The discovery was of especial interest because of this tumor's other unusual features: firstly its distinct histology, with a marked lymphocytic infiltrate giving the tumor a lymphoepithelial-like (LEL) appearance, and secondly its unique epidemiology, with an unusual age peak in 40–60 year old males and strikingly different incidence rates across the world. Thus, while rates are low in the West, the tumor occurs at intermediate to high incidence throughout South-East Asia and reaches its peak in populations of Southern Chinese decent. There are also pockets of intermediate to high incidence both in North and East Africa and among the Inuit people of the Arctic; interestingly the latter are also at risk of a salivary gland carcinoma which is very similar to NPC in its appearance and virus association, and is usually considered a variant of the nasal tumor. Irrespective of geography and of incidence rate, all cases of undifferentiated NPC worldwide are EBV-associated, with the viral genome present in every malignant cell. Such is the high frequency of NPC in some of the world's most densely populated areas that this tumor alone is estimated to impose a global burden of around 80,000 new cancer cases per year.

At least three factors contribute to NPC risk. Firstly, there is clearly a genetic element in that ~10% of NPC patients in the Southern Chinese population come from families with affected relatives; moreover genomic studies on non-familial cases have identified several allelic determinants of susceptibility, most dramatically within the HLA class I region. Secondly, studies showing a partial decline of NPC incidence rates in successive generations of Southern Chinese migrant families in the West strongly suggest that risk is also influenced by exposure to a lifestyle/environmental factor in one's early years of life; circumstantial evidence for a dietary influence common to Southern Chinese cultures, in particular weaning on salted fish, is strong in that regard. Thirdly, there is infection with EBV itself, which in many at-risk populations typically occurs in infancy.

Yes, there is recognition of cultural/lifestyle factors affecting EBV-NPC too, but the editorial's authors are arguing for a cultural explanation of experiencing and reporting fatigue post-COVID. They are implying that people in the West are soft, while those in China just get on with living their lives.

 

[Sean]

Their whole project is to refine their claim and methodology so it cannot be falsified.

Unfortunately that also means it is not delivering any advance in understanding, nor genuine benefits for patients.

But, hey, they are still employed and important, and avoiding proper accountability.

 

[MSEsperanza]

Only able to skim so apologies for just popping in:

Strange that the editorial doesn't mention ME/CFS or even CFS, while they reference papers on ME/CFS or CFS to backup their claims? [references 17, 22, 23, 25]

Also, the editorial references the outdated Cochrane review on exercise for CFS (that, according to the Cochrane editor-in-chief, Karla Soares-Weiser, needs a "full update" using a "new approach")[*].

However, the editorial doesn't reference the PACE trial -- the large trial on CFS that was designed to provide the 'final' evidence that those convinced of the effectiveness of behavioral treatments had been right in what at least one of the editorial's author, Simon Wessely, repeatedly claimed their research and clinical experience had 'shown' before, for example as early as by the end of the last century. [**]

So, just felt that there were two strange omissions here -- ME/CFS not mentioned in the text and the PACE trial, the largest randomized clinical trial on CFS, isn't referenced.

---

[*] https://www.cochrane.org/news/cfs

[**] Simon Wessely in 1999:
"[...] the management of CFS in children is in practice not contentious. Programmes of rehabilitation rather similar to those now shown to be effective in adults, including some form of support, encouragement, behavioural management and
activation, are now the mainstay of treatment in virtually all centres helping such children and their families. Indeed, it is hard to find
dissenting voices in the professional literature.

"We will shortly be presenting the results of an uncontrolled case series, adding to the literature demonstrating both the effectiveness and acceptability of such approachs, and have just commenced a randomised controlled trial as part of the normal process of demonstrating efficacy in the most scientific fashion."

(Wessely, S 1999, Rapid Response to: Marcovitch H. Diagnose and be damned, BMJ 1999; , https://www.bmj.com/rapid-response/2011/10/28/confrontational-tv-programme-harms-children )


(Found Wessely's statements tweeted here:

https://twitter.com/ABrokenBattery/status/1496208876752060429?cxt=HHwWmoC-ifqCzcMpAAAA

There are many similar statements out there by PACE trial defenders, both before and after the results of the PACE trial and the many rebuttals were published.)

Edited for clarity.

 

[Snow Leopard]

They are implying that people in the West are soft, while those in China just get on with living their lives.

In China, people with severe disabilities are either supported by their families, or they take their own lives. Many Asian countries have even more stigma about chronic illness than the UK or the USA.
I really hate this attitude that people in Asia or Africa simply "get on with it" despite severe illness, when there is never any evidence that it actually true.

 

[adambeyoncelowe]

Well, we warned this would happen. Those long COVID groups who held us at arm's length (or worse, joined in the slander) will only have themselves to blame.

But maybe now, at least, they'll see the shared threat and pull their socks up?

 

[CRG]

Studies on post-COVID-19 fatigue conducted in Europe have reported remarkably higher prevalence rates of fatigue compared to studies from China. This raises questions about possible cultural differences in the experience and/or reporting of fatigue.

Yes, there is recognition of cultural/lifestyle factors affecting EBV-NPC too, but the editorial's authors are arguing for a cultural explanation of experiencing and reporting fatigue post-COVID. They are implying that people in the West are soft, while those in China just get on with living their lives.

Always useful to look at the quoted source, in this case: Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis to check whether hyperbole is being substituted for facts. What the source actually says:

"In fact, studies conducted in Europe reported higher prevalence rates of fatigue (50–70%) or dyspnea (30–40%) as post-COVID-19 symptoms [[15], [16], [17], [18],20,27,37, [40], [41], [42]] whereas Chinese studies reported, in general, lower prevalence rates of these symptoms (12–20%) [22,23,32,43]. Factors such as younger age and lower pre-existing medical comorbidities in Chinese studies could explain these discrepancies; however, the magnitude of these different prevalence rates would suggest other relevant factors e.g., racial disparities [52] or blood type [53]. Future studies investigating the epidemiology of post-COVID-19 symptoms attending to these factors are needed."

Also notable the systematic review covers a total of 21 symptoms not just fatigue, out of 29 studies included only 17 actually recorded fatigue and there's a notable difference between hospitalised/non hospitalised where the numbers reporting fatigue are lower for the hospitalised group than the non hospitalised. All the included Chinese studies are on hospitalised patients, which may be what is causing the disparity but that in itself raises questions about who was hospitalised and given what treatment, far ahead of any hypotheticals about 'cultural experience'.

Edit: I removed a short final sentence that confused even me !!!

 

[Mithriel]

I never told a doctor I had fatigue. I said I felt ill and fluey or had a complete collapse. After CFS was invented patients began to talk about experiencing fatigue but they often meant what I had experienced. Doctors were calling that fatigue.

I suspect the difference between countries is down to language.

 

[FMMM1]

Well, we warned this would happen. Those long COVID groups who held us at arm's length (or worse, joined in the slander) will only have themselves to blame.

But maybe now, at least, they'll see the shared threat and pull their socks up?

Yea I get the impression that there was a bit of --- but we have a real illness.

 

[Haveyoutriedyoga]

Another worrying aspect is that they want to dive in early in the disease progression with their exercise/CBT research. At the very point where people have a reasonable chance of recovery, they'll get their hands on them to ensure life-long disability.

This is exactly what is so concerning about this, they will ruin lives, there is no doubt, early stages of recover are where the most difference can be made in both directions, RESTING is vital! These people are deluded

 

[Sean]

Previous research has shown that psychosocial factors, such as distressing life events, may predispose to developing PIFS, whereas symptoms of depression or anxiety, cognitive factors (i.e., illness beliefs) and behavioural factors (i.e., changes in activity patterns) may act as perpetuating factors [6,17]. It is therefore unfortunate that there seems to be opposition to research into psychosocial predisposing and perpetuating factors that play a role in PIFS.

may + may ≠ does

 

[Snow Leopard]

may + may ≠ does

If it was abuse, bullying and stressful workplaces that cause PIFS, then there is no point measuring it unless we are going to make a strong effort to reform society to eliminate those things.

Prevention is better than treatment.