Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with ... (ME/CFS), 2022, Hunt et al

Andy · Mar 27, 2022

Abstract

Whilst parallels have been drawn between Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), there is a well-documented history of negative stereotyping and marginalisation of patients with ME/CFS. A socio-politically oriented comparison of scientific, clinical and societal responses to Long Covid and ME/CFS is thus important to prevent similar harms arising among Long Covid patients. We identify four reasons for injustices in the treatment of ME/CFS patients, and discuss the risk of Long Covid following a similar trajectory. We conclude with policy and practice recommendations to help prevent such injustices arising again, including consideration of critical reflexivity in medical education.

Open access, https://journals.sagepub.com/eprint/VUHDAN4EZP5XCVVX49PH/full#.YkBpjTzhGbQ

if that link doesn't work try, https://journals.sagepub.com/doi/10.1177/13591053221084494

Dolphin · Mar 27, 2022

Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Joanne Hunt, Charlotte Blease, Keith J Geraghty
First Published March 27, 2022 Research Article
https://doi.org/10.1177/13591053221084494

https://journals.sagepub.com/doi/full/10.1177/13591053221084494

I think the full author list should be prominent in this thread, particularly with Keith (Geraghty) crowd-funding https://www.s4me.info/threads/2022-...inue-dr-geraghtys-vital-me-cfs-research.25049 .

Hutan · Mar 28, 2022

I think this is a clearly written paper. Its argument and ideas aren't new to members of the forum, but it's useful to have them in a paper that can be cited.

It concludes:

We have argued that, to date, people with Long Covid appear not to have experienced the same level of negative stereotyping, discrediting and exclusion from epistemic activities within medicine, compared with people living with ME/CFS. We have proposed that these differences can be traced to various factors, notably: prevalence of Long Covid and social power of the collective patient voice, with many Long Covid advocates being HCPs who have fallen victim to lingering symptoms after contracting Covid, clearer proximate aetiology and high incentive to research pathogenic mechanisms, and a notable demonstration of scientific and clinical epistemic humility, combined with desire to learn, in the face of absence of diagnostic biomarkers.
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Certainly it is true that the large numbers of people suddenly developing Long Covid, many of whom are medical professionals, and the obvious link to Covid-19 infections makes for a more credible illness and one with more clout. And the economic consequences arising from the large numbers suddenly affected also make it harder to brush the illness under the carpet. But I think the paper understates the psychologising that people with Long Covid have been subjected to. e.g.

Certainly, there is no indication of negative identity prejudice in Long Covid with regard to collective moral character and personal qualities as evidenced in the case of ME/CFS, where the latter has been framed by some HCPs as a ‘malingerers’ last resort’ (Chew-Graham et al., 2009: 4) and ‘a certain personality trait that is chronic fatigue syndrome waiting to happen’ (Raine et al., 2004: 2).
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It is only necessary to read through our Psychologising Long Covid thread to see that there certainly have been indications of negative identity prejudice in Long Covid.

I think the paper would have been stronger if it had not always treated ME/CFS as a single disease entity, and had looked at how people with various sorts of post-infection fatiguing syndrome have been treated. For example, I'd suggest that people with ME/CFS following Q-fever (Q-fever Fatigue Syndrome) have not been subjected to the same level of psychologising as people with ME/CFS that cannot easily be attributed to a particular acute illness trigger, and particularly, is not attributed to a particular illness outbreak. In the case of Q-fever Fatigue Syndrome, there is a higher percentage of men than is normally reported for ME/CFS, due to the higher percentage of men contracting Q-fever for occupational reasons, and a higher percentage of rural people. A doctor was heard to say on a recording of a conference something to the effect that 'these people are not like ME/CFS sufferers, these are practical hard-working people'. Post-Ebola syndrome has a clear triggering illness, and may well have affected a relatively high proportion of medical professionals. To what extent has that syndrome been psychologised?

Acceptance of the value of patients’ lived experience has extended to a widespread recognition that patients should be involved in design of research (Alwan et al., 2020), notably as ‘equal partners’ (Maxwell and Poole, 2021). Of note is an acknowledgement that Long Covid patient-researchers can offer added value to research (Taylor et al., 2021); in the case of ME/CFS and to some extent more broadly pre-pandemic, the mainstream position on patient-researchers has historically been more cautious (David et al., 1988; Greenhalgh, 2019). In the case of Long Covid, we see strategies aimed at including, rather than excluding, patient voices.
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I think the truth about patient engagement is more nuanced than the black and white situation that the authors paint. There have been examples of patient engagement in ME/CFS prior to Long Covid, and there is a great deal of Long Covid research that would benefit from better patient engagement.

I thought this was a well-made point:

A PubMed search in November 2021 of papers on Long Covid (search string ‘Long Covid or post Covid or chronic Covid or Post-acute Covid-19 syndrome or post covid-19 condition’) within the previous 12 months returned 13,287 papers, with ‘Sars-cov-2 or covid-19 or coronavirus’ returning 122,429 papers. The same search on ‘chronic fatigue syndrome or myalgic encephalomyelitis or myalgic encephalopathy’ returned 611 papers. In fact, according to PubMed, more papers have been published in the last year on Long Covid than have been published on ME/CFS in the last 70 years combined (9958 papers since 1950).
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And this:

Such openness to ‘not knowing, but willing to find out’ can be observed in increased recognition, in published literature and in the media, of scientific uncertainty (BBC, 2020b; Koffman et al., 2020; Rutter et al., 2020). It is thus feasible that the scale of the pandemic and the unpreparedness of clinical and scientific structures have enforced a form of epistemic humility.
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Further, since dominant discourse around health and illness is historically as well as socially contingent, the history of medicine should be considered an important component of the medical syllabus (Jones et al., 2015). In this regard, teaching could include discussion of conditions that were once medically unexplained (and often subject to psychologisation and dismissal of patient testimony) before becoming medically accepted.
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This is a great suggestion. Many medical students come from wealthy homes and have a track record of academic success. Medical students who can memorise a large body of knowledge tend to be rewarded rather than those who question that knowledge. Doctors have traditionally been given a great deal of respect, and are expected to make medical decisions quickly and with confidence. None of that encourages humility and the recognition of uncertainty. Some time spent looking at how wrong some medical ideas that were once firmly held were might be a useful, if partial, antidote.

(edited to add the link to the Psychologising Long Covid thread - currently 59 pages long)

Jaybee00 · Mar 27, 2022

“Since then, a vigorous debate has emerged over whether and how the two conditions are related”

Here is how they are related. If you meet the diagnostic criteria for MECFS at six months, then you have MECFS. If your MECFS was triggered by Covid, then you could say that you have Covid-triggered MECFS. The article should emphasize this.

Dolphin · Mar 28, 2022

The authors have uploaded a version of this here https://www.researchgate.net/public...ephalomyelitis_chronic_fatigue_syndrome_MECFS

rvallee · Mar 28, 2022

In the case of Long Covid, we see strategies aimed at including, rather than excluding, patient voices.
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Yeah, this is sadly misleading. The main difference is that many individual researchers have worked in collaboration with patients or even that patients themselves did the research and wrote the papers, they took the initiative and produced most of the early useful work. At the institutional level, there is basically none, it's the usual performative theater and of course we've already seen the explicit efforts to deny the disease, which have gained much more interest from the medical community. The only two significant initiatives, by the NIH and NIHR, all followed the classic top-down model of whatever researchers are interested in if they can grab the funding for it.

There is still no meaningful patient engagement outside of small efforts that are almost exclusively out of personal initiative. The early reception of patient-involved research was mostly mockery and outright disdain, explicitly because they involved patients. It's still a toxic feature for research to involve patients other than as theater.

Also there's a good example here of Greenhalgh's work, which has included patients, yet somehow features little of their perspective. One of her early papers had a single reference to ME (well, it was "chronic fatigue"), and it was fully dismissive, which is the opposite of almost all other efforts involving patients, because they are not biased and mislead by medical dogma. Especially the first Body Politic paper explicitly noticed the similarities and it was in their conclusion, especially with medicine being absent, it's the chronic illness community that helped out. People like Greenhalgh use patient involvement to put their thoughts and beliefs as if they were independently validated, when in fact it's the same old BPS formula of putting their own speculations as facts.

The only real difference here is social media allowing the patient community to communicate and collaborate. This is why most of the BPS ideologues are obsessed with keeping the patients isolated. If the pandemic happened just a few years before Internet usage had become ubiquitous, if it had been up to medicine to do all the work, it 100% would have been psychologized and very likely would have been used to massively boost the "mass hysteria" component of psychosomatic ideology.

Medicine is responding to this the same old way. It's the patients that change everything, this time they can't be silenced. They're still not being listened to, but they won't be buried alive like it always used to work.

Snow Leopard · Mar 30, 2022

rvallee said: ↑

Yeah, this is sadly misleading. The main difference is that many individual researchers have worked in collaboration with patients or even that patients themselves did the research and wrote the papers, they took the initiative and produced most of the early useful work.
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Exactly. Apart from a few patients that were already researchers and took charge in pursuing research goals, most LongCOVID research has mostly ignored patient views and has also largely ignored the pre-existing body of post-viral research.

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Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with ... (ME/CFS), 2022, Hunt et al

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