UK: PRIME Workshop 2: The Similarities and Distinctions between Long Covid & ME/CFS, 24th April, 2026 2-5pm GMT

Andy

Andy

Senior Member (Voting rights)
General abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-acute sequelae of SARS-CoV-2 infection (Long Covid) are complex, multisystem conditions with substantial symptom overlap and marked functional impairment. Epidemiological studies indicate that approximately two-thirds of individuals with ME/CFS report a preceding acute infection, most commonly viral, prior to symptom onset. Long Covid is defined by the persistence or emergence of symptoms for at least 12 weeks following acute SARS-CoV-2 infection, providing a clearly identified infectious trigger. Both conditions share core clinical features, including post-exertional malaise, disabling fatigue, cognitive dysfunction, sleep disturbance, autonomic symptoms, and pain, suggesting overlapping pathophysiological pathways.

Important distinctions between the two diseases remain. ME/CFS is a heterogeneous syndrome that can follow non-infectious triggers, whereas Long Covid is, by definition, post-viral. In addition, certain symptoms, such as anosmia and prominent respiratory complaints, are more prevalent in Long Covid, particularly early in the disease course.

This workshop will critically examine similarities and distinctions between ME/CFS and Long Covid across clinical, biological, and research frameworks, with the aim of leveraging insights from both fields to inform diagnosis, stratification, and therapeutic development.

Speakers:
  • Prof. Danny Altmann – Professor of Immunology, Imperial College Faculty of Medicine
    Rosetta Stone - a new study funded by the ME Association to characterise shared pathways between ME/CFS and Long Covid

  • Dr. Andy Malinowski – VP Disease Biology, PrecisionLife
    Genetic Commonalities between ME/CFS and Long COVID: Insights from Combinatorial Analysis

  • Dr. Amy Proal – CEO/Research Director, PolyBio Research Foundation
    Long COVID and ME/CFS: why persistent infections matter

  • Prof. Manoj Sivan – Professor & Honorary Consultant in Physical & Rehabilitation Medicine, Univ. Leeds
    The overlapping clinical syndromes of Long COVID and ME/CFS

  • Prof. Nisreen Alwan – Head of the Centre for Population Health Sciences and Professor of Public Health at the University of Southampton
    What is the role of the 'case definition' in shaping the research and health inequalities landscapes of ME/CFS and Long Covid?
Online: Register here
 

Attachments

Webinar blurb said:
Long Covid is defined by the persistence or emergence of symptoms for at least 12 weeks following acute SARS-CoV-2 infection, providing a clearly identified infectious trigger. Both conditions share core clinical features, including post-exertional malaise, disabling fatigue, cognitive dysfunction, sleep disturbance, autonomic symptoms, and pain, suggesting overlapping pathophysiological pathways.

Important distinctions between the two diseases remain. ME/CFS is a heterogeneous syndrome that can follow non-infectious triggers, whereas Long Covid is, by definition, post-viral. In addition, certain symptoms, such as anosmia and prominent respiratory complaints, are more prevalent in Long Covid, particularly early in the disease course.
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This seems very odd. If you are starting from this premise, then it's not helpful for good participant selection in studies, nor for webinars discussing differences and similarities between ME/CFS and Long Covid.

Long Covid is defined as 'persisting symptoms after COVID-19'. It is therefore an umbrella term for all sorts of things, including anosmia alone, and respiratory issues due to overt lung damage alone. But, the people running the webinar seem to think Long Covid is one disease, with one pathophysiological pathway.

If people meet modern ME/CFS criteria including well-characterised PEM (rather than post-exertional fatigue) following a Covid-19 infection (or an EBV infection, or a Q-fever infection), then they have ME/CFS. ME/CFS right now is simply a particular collection of symptoms that can't be attributed to some identified pathophysiology.

It seems to me, the question the webinar is asking is wrong. That's going to make it very easy for the answers to be wrong too, and simply add to the muddle.
 
Felis Catus said:
Is there any strong evidence that COVID- triggered ME/CFS is different than ME/CFS not triggered by COVID?

(I know there are papers claiming differences.)
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Given the variation within both Long Covid and ME/CFS and the problems of selecting meaningfully comparable samples, I suspect that we will not achieve a satisfactory consensus on this question.

It will be interesting what we see when there are people with Long Covid with symptoms lasting decades. Will Long Covid remain a meaningful diagnosis or will Covid 19 just become seen as another possible trigger for ME/CFS?
 
Felis Catus said:
Is there any strong evidence that COVID- triggered ME/CFS is different than ME/CFS not triggered by COVID?

(I know there are papers claiming differences.)
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As someone whose MECFS was triggered by covid after a prolonged period of LC I'm very confused why people (maybe primarily LC advocates) think covid-triggered MECFS is different. What would make it so special compared to EBV/influenza/surgery-triggered MECFS?

Perhaps it's because of the stigma that comes with MECFS, perhaps it's bias because everyone got ill at the same time unlike cases triggered by another virus. Perhaps it's wanting to be taken seriously when LC is a useless label.
 
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Peter T said:
It will be interesting what we see when there are people with Long Covid with symptoms lasting decades. Will Long Covid remain a meaningful diagnosis or will Covid 19 just become seen as another possible trigger for ME/CFS?
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I came across pwLC who were diagnosed with ME/CFS in the first year of their illness. In hindsight I'm wondering if that was related to the service provision in their area, i.e. ME/CFS services, no LC services.

Then you have people who got diagnosed with ME/CFS after being discharged from LC services because they still had symptoms and there was nothing else their GP could do.

I wonder how the ME/LC/post-viral combined services are going to approach the diagnostic process. If someone doesn't have ME/CFS, they can do GET. LC therapists love breathing programmes. So there might be an incentive to keep the LC label for the sake of keeping pointless jobs.
 
Peter T said:
It will be interesting what we see when there are people with Long Covid with symptoms lasting decades. Will Long Covid remain a meaningful diagnosis or will Covid 19 just become seen as another possible trigger for ME/CFS?
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I'm hearing that a lot of people with a Long COVID label definitely don't want an ME/CFS label. I don't know if that will change with time.
 
obeat said:
I wonder if the stigma of ME/CFS is contributing to the rise in MCAS diagnosis, which sounds so much more biological.
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I think so. Another reason could be an influx of pwLC who easily meet the criteria. So basically, anyone with pre-COVID ME/CFS and lots of types of LC, diagnosed or not, can be diagnosed with MCAS.

Also, private practitioners like to promise that treating MCAS will reduce the symptom burden and get you on the path to recovery.

obeat said:
Apparently the criteria are to be broadened.
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:laugh:
 
OrganicChilli said:
As someone whose MECFS was triggered by covid after a prolonged period of LC I'm very confused why people (maybe primarily LC advocates) think covid-triggered MECFS is different.
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If it fits the picture well, it seems the most sensible diagnosis.

It's probably worthwhile to make sure Covid and non-Covid cohorts could be separated in study analyses, but that only involves adding a tick box to a questionnaire.
 
There are criteria that involve a rise in tryptase , but to me it all sounds like allergic/ anaphylaxis type reactions

I expect the new criteria may be very like ME/CFS??
 
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obeat said:
I expect the new criteria will be very like ME/CFS??
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More like homeopathy I think.
They will require evidence of mast cell activation but the evidence required will be so small that it no longer can be identified (as mast cell activation).

Criteria for ME/CFS do not require evidence of anything, just symptoms.

The reviews on MCAS make it very clear that nobody has a useful concept of it.
I note today that you can diagnose your own MCAS with AI.
 
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