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

[Andy]

Authors

Anouk Verveen, Fabiola Müller, Andrew Lloyd, Rona Moss-Morris, Torbjørn Omland, Brenda Penninx, Ruud P.H. Raijmakers, Marike van der Schaaf, Carolina X. Sandler, Knut Stavem, Simon Wessely, Vegard B.B.Wyller, Pythia Nieuwkerk, Hans Knoop

1. Background

Now that the COVID-19 pandemic has been ongoing for almost two years, increasing attention is directed towards what is being called ‘Long COVID’ or ‘post-acute sequelae SARS-CoV-2 infection’ (PASC). Fatigue is one of the main symptoms of PASC [1]. Prevalence rates of fatigue persisting for months after COVID-19 onset range from 9% to 58% depending on time of follow-up, study population, recruitment method and in-depth evaluation [[2], [3], [4]].

Post-infective fatigue syndrome (PIFS) is defined as persistent, severe fatigue after an infection that cannot be explained by other medical or psychiatric conditions, which has been present for at least six months and significantly affects daily functioning [5]. PIFS is not unique to COVID-19. It has been reported after a diverse spectrum of infectious diseases, including but not limited to Q fever, Lyme borreliosis and SARS-CoV-1, where persistent illness and disability is recognised in 10–35% of adolescents or adults [[6], [7], [8]]. Factors predictive of PIFS include clinical and laboratory features indicative of the severity of the acute infection, and psychological factors such as the cognitive and behavioural responses to the acute illness [6,9]. The question why some patients develop PIFS whereas others do not, remains largely unanswered.

The COVID-19 pandemic provides a unique opportunity to investigate pressing questions with respect to the mechanisms that contribute to developing post-COVID-19 fatigue, thereby potentially helping answering unresolved questions regarding PIFS after other infections. The COVID-19 pandemic offers the opportunity to investigate these questions in large scale prospective studies among patients with known dates of infection onset. As COVID-19 is a worldwide pandemic it provides opportunities to investigate social and cultural factors contributing to PIFS. With these opportunities it is important to think about how to transfer knowledge from COVID-19 to foster our understanding of PIFS more broadly. Conversely, research on post-COVID-19 fatigue may benefit from insights from PIFS obtained in previous research.

Open access, https://www.sciencedirect.com/science/article/pii/S0022399922000113

 

[Andy]

Knoop et al write:

"Exercise therapy was previously found to be effective in chronic fatigue syndrome [25], but its effectiveness has not yet been studied in PIFS. Until now, the effectiveness of interventions have only been investigated among patients who were fatigued for prolonged time periods. The COVID-19 pandemic offers the opportunity to carry out research earlier in the natural history of these condition."

The evidence for their claim is the Cochrane review.

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

 

[Trish]

Some worryingly familiar names on that list claiming a territory they have shown for 30 years they don't understand and have an agenda - namely pushing GET. And the usual: 'opportunities to investigate social and cultural factors contributing to PIFS'.

I hope the long covid patient groups will challenge every piece of research and claim this group are involved with.

 

[Caroline Struthers]

Knoop et al write:

"Exercise therapy was previously found to be effective in chronic fatigue syndrome [25], but its effectiveness has not yet been studied in PIFS. Until now, the effectiveness of interventions have only been investigated among patients who were fatigued for prolonged time periods. The COVID-19 pandemic offers the opportunity to carry out research earlier in the natural history of these condition."

The evidence for their claim is the Cochrane review.

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

I don't know where to start...

 

[Hoopoe]

A research agenda for the benefit of certain researchers, not patients.

Why are they not citing the results of the Dubbo studies which showed no correlation between pre-illness psychological factors and development of prolonged illness after infection? Or the recent study by Jason which had similar results.

Any correlation they find between psychological factors and illness are likely a consequence of the illness, not a cause. The best way to treat psychological distress associated with this illness is by treating the illness.

We also know from the PACE trial and others that changing the patient's state of mind to be more positive doesn't reduce disability or objective indicators of physical function like walking speed or employment. That's good reason number two to expect little to no meaningful results from the application of their beloved psychosocial model.

They just want to grab more funding, publish more useless junk science and draw more patients into the useless psychosocial pathways of care.

 

[Arvo]

PIFS was the never-used invented second syndrome or "subtype" of CFS from the Oxford criteria (not describing an actual disease process).

I considered it a combination of lip service to e.g. Mowbray and Behan so they would cooporate and give the criteria the cred it definitely lacked otherwise due to lack of actual expertise present, an escape hatch, because there was still research into ME then, looking at viral causes, immunology and mitochondria and such. PIFS ("CFS" with a laboratory proven viral aetiology) could be chopped off CFS and the psychiatrists would still have a "fatigue syndrome" to claim.

Expect a lot of this stuff coming from the dutch; not only is it a BPS bastion with its ideology woven through medical health care, but the dutch government has quite openly followed a strategy of Sars-Cov-2 immunity-through-infections, and a continued spread of the virus through the community. (The limit was the hospital capacity, not the number of infections.) Everything will be put in place to prevent accountability for the effects of that, so these people will get ample room and funding.

Note that the paper

.....is part of the project ReCOVer: A Randomised Controlled Trial
testing the efficacy of Cognitive Behavioural Therapy for preventing chronic
post-infectious fatigue among patients diagnosed with COVID-19 with
project number 10430012010025 of the research programme COVID-
19, financed by ZonMw.

That project is discussed here.

(Meanwhile M. Prins* works with other familiar CFS/MUS players on "Project RECoVERED" which is led by a virologist who is part of the dutch Outbreak Management Team advising the government and who on behalf of them broadly propagated the herd immunity approach (immunity-by-infections) in the first quarter of 2020, and who now keeps implying Long COVID is psychosomatic.)

Also notice the organisation COFFI (with a coffee cup logo, because they wouldn't be them without a cutesy, downplaying acronym), which was initiated in 2015 but got established as "a more formal organisation"in September 2020 (gee, I wonder why?).

The objective states

Investigations in these cohorts suggest that the host (rather than the pathogen) is the key determinant of the persistent illness, but the pathophysiology remains unresolved.

Exacly how a bunch of psychiatrists and behavioural therapists are going to satisfactory solve infectious illnesses with severe physical consequences like mitochondrial, cardiovascular, immonological and nervous system dysfunction is a bit of a puzzle, but it might lead to a neat collaboration between the various disease experts and patients. (I'd be quite livid if I was specialising in e.g. inflammatory vascular endothelial damage and these clowns came around.)


Edited to add: note Maria Prins is not Judith Prins. I don't know if they are related.

 

[Arvo]

It has been reported after a diverse spectrum of infectious diseases, including but not limited to Q fever, Lyme borreliosis and SARS-CoV-1, where persistent illness and disability is recognised in 10–35% of adolescents or adults [[6], [7], [8]]. Factors predictive of PIFS include clinical and laboratory features indicative of the severity of the acute infection, and psychological factors such as the cognitive and behavioural responses to the acute illness

Lyme borroleosis doesn't just evaporate by itself. Wheter it stays or goes is not dependant on "cognitive and behavioural responses to the acute illness", but on how fast you are treated and if the treatment works.

Also:

The question why some patients develop PIFS whereas others do not, remains largely unanswered.

It was answered twice just this week, in Cell and Nature. (accompanying articles here and here)


Completely in line with the dutch health minister though, who yesterday, after a lot of evasion, claimed that "we still know too little about it", even to say if long-term effects of Sars-CoV-2 even happened.

 

[Andy]

Also notice the organisation COFFI (with a coffee cup logo, because they wouldn't be them without a cutesy, downplaying acronym), which was initiated in 2015 but got established as "a more formal organisation"in September 2020 (gee, I wonder why?).

The objective states

Exacly how a bunch of psychiatrists and behavioural therapists are going to satisfactory solve infectious illnesses with severe physical consequences like mitochondrial, cardiovascular, immonological and nervous system dysfunction is a bit of a puzzle, but it might lead to a neat collaboration between the various disease experts and patients. (I'd be quite livid if I was specialising in e.g. inflammatory vascular endothelial damage and these clowns came around.)

Our thread on COFFI is here, The international collaborative on fatigue following infection (COFFI), 2018, Katz et al

 

[Chris]

As COVID-19 is a worldwide pandemic it provides opportunities to investigate social and cultural factors contributing to PIFS

This argument is a complete contradiction: anything which is worldwide renders futile to investigate socio-cultural factors!

The title is ironically well chosen - "a research agenda", indeed these authors sure have an "agenda"...

(edit: if the authors mean that covid is worldwide but long covid varies between social contexts, then it's not a contradiction, - but it's still a mistake!)

 

[rvallee]

These people are ghouls. They never have enough blood on their hands, all they think about is themselves.

Great example of Orwellian rewriting of, well, actually the present. These are people who have literally mocked the idea that infections are relevant to this for their entire career. And no doubt they will speak of those years completely differently than how it happened. And almost everyone will play along. Because yay doublethink!

I am rarely genuinely disgusted by people but this is just a visceral reaction here. This is what medicine looks without humanity and science, a bunch of ghouls toying with things they can't understand, completely indifferent to human life other than their own.

Also this is basically like Andrew Wakefield writing about an agenda for vaccination. This ideological model has been a complete and total failure and it doesn't even matter. And they want to do it all over again, the exact same way.

 

[Barry]

First question: What business have psychiatrists got to be poking their noses into this?

 

[Sean]

Factors predictive of PIFS include clinical and laboratory features indicative of the severity of the acute infection, and psychological factors such as the cognitive and behavioural responses to the acute illness [6,9]. The question why some patients develop PIFS whereas others do not, remains largely unanswered.

Not sure those two statements are consistent.

 

[chrisb]

The definition of PIFS in the editorial looks strange. The definition given in the Oxford Criteria, which they cite is:

Post-infectious fatigue syndrome (PIFS)

This is a subtype of CFS which either follows an infection or is associated with a current infection (although whether such associated infection is of aetiological significance is a topic for research).

To meet research criteria for PIFS patients must

(i) fulfil criteria 'for CFS as defined above, and

(ii) should also fulfil the following additional criteria:

(a) There is definite evidence of infection at onset or presentation (a patient's self-report is unlikely to be sufficiently reliable).

(b) The syndrome is present for a minimum of 6 months after onset of infection.

(c) The infection has been corroborated by laboratory evidence.

How many of the studies which they cite have definitive evidence of infection corroborated by laboratory evidence? This was always the major stumbling block as it excluded many of those with ME who were diagnosed specifically because they had clear infection but without positive test results,

 

[Solstice]

Wow, nobheads of all countries unite! It's like they picked the worst wafflers from every country to build a superteam of incompetent scientists.

 

[Cheshire]

The COVID-19 pandemic provides a unique opportunity to investigate pressing questions with respect to the mechanisms that contribute to developing post-COVID-19 fatigue, thereby potentially helping answering unresolved questions regarding PIFS after other infections.

I thought they had proven it was due to well identified precipitating and maintaining factors.
Or could it be that they have been way too assertive in the way they've been presenting their theory which is only a modell?

 

[It's M.E. Linda]

Asked whether this actually has a formal medical coding yet.
Hope Long Covid Community recognises the dangers.

 

[FMMM1]

A research agenda for the benefit of certain researchers, not patients.

Yip and those [public servants] agreeing to funding for projects [UK - NIHR] which lack any meaningful outcome indicators (relying on questionnaires) should be challenged by the APPGs, public accounts committee +++

Haven't been keeping up but have these charlatans received funding from NIHR or other public funding?

 

[Tal_lula]

Asked whether this actually has a formal medical coding yet.
Hope Long Covid Community recognises the dangers.

Asked whether this actually has a formal medical coding yet.
Hope Long Covid Community recognises the dangers.

Hi, Linda, it's me (Emma). 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 (although I don't come across ME/CFS very often personally, except as an occasional comorbidity). The closest is Postviral Fatigue Syndrome (G93.3) which, as you know, is the code for ME, and the only other term listed for that code is Chronic Fatigue Syndrome. This means that if a clinician did record PIFS, we would typically have to clarify with them what they meant, but most likely it would be coded as G93.3 rather than F48.0 (Fatigue Syndrome/Neurasthenia), a Mental & Behavioural Disorders code (although the latter would be an option.

I found this sentence absurd, "Fatigue is one of the main symptoms of PASC". Fatigue is also one of the main symptoms of cancer, but we don't call that 'Malignant Tumour Fatigue Syndrome'.

 

[Willow]

An attempt by the BPSers to remain relevant and keep their fingers in the pie.

 

[Sean]

The acronym generation machine keeps churning them out.