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

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

 

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 .

 

“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.

 

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

 

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.

 

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.