I just want to write to the long COVID world everything that is happening to you is ME/CFS
I would be more cautious on this link.
Confounding symptoms between long Covid and ME
Aside from the (possibly long-term) pathologies induced by SARS-CoV-2 that can reduce tolerance to exertion and cause fatigue, such as heart, lung and neurological damage, some long-haulers don’t seem to have typical ME/CFS symptoms — PEM first and foremost. Or even if we’re talking about “classic ME”, lingering muscle fatigability that is consistently and abnormally worsened by exertion is not reported by all. Some do benefit from physiotherapy in regaining physical function.
So to begin with, it is crucial that all long-haulers are screened extensively through thorough blood tests, imaging, and clinical examination (especially for neurological, vascular and dermatological symptoms). In places where ME is conflated with chronic fatigue, and proper ME diagnostic criteria are unknown, such an assessment won't be offered to long-haulers who receive an unjustified "get out of my office" diagnosis of PVFS or ME. I fully understand their frustration about this, and I certainly wish ME wasn't a wastebasket diagnosis. (Thanks but not thanks to the BPS ideological brigade, who have framed it as a psychosomatic illness/MUS for over 3 decades.)
With this being said, I am as worried as you -- and probably everyone living with ME -- about the long-haulers who have PEM and other ME/CFS symptoms. First, they might not be aware of just how vital rest and pacing are in preventing severe, long-term deterioration. Second, and most paradoxically, for them receiving a diagnosis of ME will do more harm than good to their health if it comes with a prescription of graded exercise therapy and/or CBT-for-ME, both of which advise pushing through symptoms.
I sincerely hope that this subset of long-haulers will receive proper information about ME -- rest & pacing, diagnostic criteria, treatments for comorbidity --. Along with correct medical care, this is the single most important thing for them in the long run. Thankfully, some appear to have recovered at the 4-5 month mark but those who haven't need this information ASAP.
Research on long COVID concerns all of its forms, not only ME
Long Covid is the first massive research effort into understanding one specific (set of) post-viral syndrome(s), and we can plausibly hypothesize that it would in fact help understand PV(F)S and ME. But our own bias of suffering from post-viral ME shouldn’t convert this hypothesis into an assumption — there may be a part of the syndrome(s) that is specific to SARS-CoV-2 and as such doesn’t generalize.
I think it’s pretty important that researchers look into post-COVID syndrome(s) without any biases. That’s how research ought to function. Not that they should discard similarities with ME or any other known condition (they can get clues from previous research), but they shouldn’t assume anything either. Claiming associations with some conditions or biomolecular mechanisms without sufficient evidence would be detrimental. There is a risk that it might happen if research into long COVID research is not sufficiently funded.
At this point in time, with limited biological (and epidemiological) data from long-haulers being available, they should just come forward with some working hypotheses from looking at the preliminary data, test them more reliably once further data comes in, and adjust from there on.
Though, I agree, that it seems unlikely researchers would conflate long Covid with ME. Reasons include the lack of a distinct biological marker, or even tentative but precise biological leads, their lack of knowledge about ME (symptoms besides fatigue & previous research), stigma around the disease and long-haulers’ calls for not doing so (partly related to said stigma).
In any case, basic research into the often debilitating long-term consequences of a viral infection is being carried out. This is exactly what is needed. That this will help out long-haulers — they must not suffer with no end in sight as we have — and that this is finally happening are the only things that really matter to me.
What does long COVID research entail for ME?
Right now, I would argue that COVID research might be
more beneficial for understanding ME than studying ME directly. COVID research may identify sufficiently homogeneous subsets of people who meet ME/CFS criteria that 1) have acceptable evidence of an unique triggering agent, SARS-CoV-2, either through a positive PCR or antibody test or, lacking this, from correlating the clinical picture with the time of disease onset (especially at the peaks of each country’s transmission of SARS-CoV-2), and 2) will have had other conditions excluded through fairly extensive testing.
This will increase the reliability of biological findings from these ME/CFS subsets, whereas cohort heterogeneity in ME research due to the difference in triggering factors among participants has consistently hindered it (even with the stricter CCC/ICC). Hopefully large COVID studies that aren’t focused on ME, e.g. the NIH and PHOSP-COVID studies, will investigate the ME/CFS subsets they identify, if any. This should happen if they are of significant size.
Large homogeneous cohorts followed up long-term with sufficiently-funded, high-quality basic research, and the opportunity of replication & validation across different studies, has not been achieved for ME yet. I'm not confident that it will ever happen, so focusing on COVID research for ME is an alternative.
I see it as a high-risk, high-reward bet: either it does not yield results thus wasting time and funding from ME research (especially if not many long-haulers go on to develop ME/CFS, which is the best case I deeply hope for), or it’s — as we speak — ME research "in the making" if it eventually successfully identifies and investigates ME/CFS subsets. We will only know in retrospect.
Once again, in the meantime, for the sakes of research and long-haulers' care, we mustn't turn our hypotheses about long Covid and ME into assumptions. I find myself wanting to do so because, as for all of us, I long for high-quality research on anything that could contribute to understanding the biological basis of ME. We all want treatments. But keeping this bias at bay, although very difficult, is necessary.
(I share these thoughts here on S4ME because there is, to say the least, awareness of how damaging biases can be in and for research).
EDIT: formatting for easier reading.
