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.
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).
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.
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).
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.
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.
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)
