Is Long Covid a type of ME/CFS?

Moved post

Editorial in The Michigan Daily:
Michigan Medicine needs to address post-viral illness

https://www.michigandaily.com/opinion/michigan-medicine-needs-to-address-post-viral-illness/

Very good op-ed piece, includes discussion of both ME/CFS and Long Covid.

The Michigan Daily said:
My name is Glenn Tucker and I live with a debilitating disease called myalgic encephalomyelitis, or ME for short. According to the Centers for Disease Control, “People with ME have overwhelming fatigue that is not improved by rest. ME may get worse after any activity, whether it’s physical or mental.” ME used to be called Chronic Fatigue Syndrome, a term many now find offensive, including some of the doctors that coined it. A 1996 study published in the American Journal of Medicine — and since corroborated multiple times — found that people with ME score lower on quality of life indices than people with cancer, heart disease, multiple sclerosis and diabetes.

If you haven’t heard of ME, it’s not because it is a rare disease: before the pandemic an estimated 2 million Americans lived with ME, more than HIV/AIDS (1.2m), lupus (785k) and multiple sclerosis (486k). Nearly eighty percent of ME cases start with a viral infection. Seventy-five percent of people with ME are women, and 25% are bedridden, like me. I have been bedridden for nearly four years and sick for nearly eight. A 2008 study found that ME costs our nation’s economy between $17 billion and $24 billion in lost wages and medical expenses.
Click to expand...
 
Last edited by a moderator:
Here's the best answer I have found to my question:
Preprint: Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany.., Kedor et al, 2021
This is a small study and the definition of PEM is not clear, but it found that 41 out of 42 participants had PEM, and around half met the criteria of the CCC.

And this paper by Angus Mackay (which has parts I disagree with) has a good analysis of the evidence for some LC being ME/CFS in 2021
A Paradigm for Post-Covid-19 Fatigue Syndrome Analogous to ME/CFS, 2021, Mackay

It's surprising how limited the evidence is, even half way through 2022.
 
Hutan said:
Are there any studies yet to support a statement that Covid-19 can trigger the onset of ME/CFS?
Click to expand...
There was also this one:Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease, 2021, Mancini et al
It used Fukuda though.

Then there was this one relatively early on, where the vast majority experienced PEM. It was an online survey though: Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

This one doesn't seem to have its own thread, but it was published in Science and was written by Nath and another author. It is about all kinds of neurological manifestations, not just long covid but ME/CFS is mentioned as probably something of similar pathomechanism:
Nervous system consequences of COVID-19

--

Not studies but when I write messages to doctors, I also mention that when the WHO created the case definition of post-covid conditions, then a voting happened when 70% was necessary for a symptom to get included in the case definition (it was a bit more complicated, whoever wants to check it can do so in the link). PEM got 67% and that's how close we got to the WHO LC case definition becoming almost identical to the more recent ME/CFS diagnostic criteria. WHO: A clinical case definition of post COVID-19 condition by a Delphi consensus

I also mention the CDC's interim guidance for PASC, which mentions ME/CFS and PEM and energy management: USA: Centers for Disease Control (CDC) - Post Covid Conditions: Interim Guidance, June 2021
 
https://www.cdc.gov/me-cfs/pdfs/cfs-covid-presentation-508.pdf

set of slides
Post Covid-19 ME/CFS
Hector Bonilla, MD
Associated Professor IM/ID, Stanford University

I'm sure the presentation and the specific study mentioned has been posted about on the forum, but parking this table here. Post-Covid Stanford cohort - 94 people, assessed against the IOM criteria

Gender split is not particularly marked.
Screen Shot 2022-06-07 at 2.48.52 pm.png
 
How Chronic Fatigue Syndrome is helping doctors understand long COVID

"Long COVID is destroying lives. It is actively destroying lives. And right now, there is no known cure for long COVID," Dr. David Putrino says.

Meanwhile, researchers who’ve spent decades studying Chronic Fatigue Syndrome also known as ME/CFS, are saying, ‘We can help.’

"There is a lot to be learned from ME/CFS research and it would facilitate what's happening in long COVID research and move it along a lot more quickly, if there was better coordination," Dr. Lucinda Bateman says.

Today, On Point: How doctors studying a condition that many in the medical community have long been skeptical about, could help reveal the mysteries of long COVID.
Click to expand...

https://www.wbur.org/onpoint/2022/1...rome-is-helping-doctors-understand-long-covid
 
Hi,

As far as the terminology used in many studies and guidelines, I’ve noticed that subsets of Long Covid patients are often described as “fitting the diagnostic criteria of ME/CFS” or “having symptoms identical to ME/CFS” but it is rare that they are described as “having ME/CFS”.

Why is this? ME/CFS is diagnosed based on symptoms, if these patients have such symptoms, why aren’t they described as having ME? ME/CFS diagnostic criteria does not “care” what the cause of the symptoms are.

Long Covid meanwhile seems like a large umbrella term encompassing a variety of illnesses resulting from covid infections, some previously described (ME, POTS, MCAS etc.) and possibly some novel ones too.

As far as I understand someone with ME/CFS from Long Covid should be diagnosed with both and described as such. In fact, as I understand it, the relationship between ME/CFS and Long covid is best seen as a Venn Diagram. Can someone care to explain why there seems to be this reluctance to admit the “Venn diagram-like” relationship?

For those unfamiliar, this is a Venn Diagram upload_2024-5-16_20-21-26.jpeg
One side would be long covid, the other ME/CFS and the middle those who got ME/CFS from covid.
 
Some people at the start of LC didn’t know about ME or if they did it was the stereotypical incorrect idea of what ME is. So they didn’t see any connection.

even people who see the read across might be reluctant to accept ME diagnosis due to stigma

as many key workers likely caught COVID and hence LC through their work activity they would be arguing for being dealt with as an occupational illness and compensation accordingly so in their interest to reject it being ME. Grouping all people affected by the cause rather than by symptoms
 
Yann04 said:
Why is this? ME/CFS is diagnosed based on symptoms, if these patients have such symptoms, why aren’t they described as having ME? ME/CFS diagnostic criteria does not “care” what the cause of the symptoms are.
Click to expand...

It's a fair question but there is a reason for being cautious.

ME/CFS as a concept is not just a concept of having certain symptoms now. It is the concept of having certain symptoms that are very likely to go on for a long time. Chronic bronchitis is defined in terms of symptoms that go on for a long time. Someone may have all the symptoms of chronic bronchitis and yet be completely free of them by next month.

The problem for Long Covid is that there is good reason to think that at least two thirds and maybe nine out of ten people will get reasonably back to normal after a few months. They may continue not feeling as good as they did. It may be that Covid knocks people back in some way, like major surgery can, leaving them as if they were five years older. But that would be different from continuing ME/CFS.

The bottom line is that medical diagnoses are really much more about predicting the future than describing the situation now. They are there to tell people what will happen, including how likely treatments are to change what happens. For people who fit the diagnostic criteria for ME/CFS after Covid the likelihood of what will happen may be significantly different from other people with ME/CFS.
 
Jonathan Edwards said:
The problem for Long Covid is that there is good reason to think that at least two thirds and maybe nine out of ten people will get reasonably back to normal after a few months. They may continue not feeling as good as they did.
Click to expand...
Agreed, but since most major diagnostic criteria have a 6 month clause (except the ICC, but the ICC is quite strict in other ways) doesn’t that become redundant?

It’s also highly likely that ME/CFS recovery rates are actually higher than most studies point to, simply due to the fact that it is so hard to get a diagnosis. You are more likely to only get diagnosed once you are further along into the illness or your symptoms are more severe. I think in that sense, Long covid will help understand the true recovery rates, and the crucial question of why some people recover in the first few years and others don’t.
 
Jonathan Edwards said:
It's a fair question but there is a reason for being cautious.

ME/CFS as a concept is not just a concept of having certain symptoms now. It is the concept of having certain symptoms that are very likely to go on for a long time. Chronic bronchitis is defined in terms of symptoms that go on for a long time. Someone may have all the symptoms of chronic bronchitis and yet be completely free of them by next month.

The problem for Long Covid is that there is good reason to think that at least two thirds and maybe nine out of ten people will get reasonably back to normal after a few months. They may continue not feeling as good as they did. It may be that Covid knocks people back in some way, like major surgery can, leaving them as if they were five years older. But that would be different from continuing ME/CFS.

The bottom line is that medical diagnoses are really much more about predicting the future than describing the situation now. They are there to tell people what will happen, including how likely treatments are to change what happens. For people who fit the diagnostic criteria for ME/CFS after Covid the likelihood of what will happen may be significantly different from other people with ME/CFS.
Click to expand...
I caught part of this presentation*, by PrecisionLife (they'll analyze the data from DecodeME) if I follow correctly, they identified genes/pathways relating to sleep in Long COVID.
If e.g. Long COVID gets funding for a large genetic study [GWAS like DecodeME], and the [Long COVID] participants are 2 years post (proposed) triggering infection, then happy days -- any pathways identified could well be relevant to ME/CFS - plus Long COVID may be better placed to test repurposed drugs --- potential treatments for ME/CFS.

*UniteToFight2024 - Sayoni Das, PhD, SVP of Bioinformatics at PrecisionLife, Oxford, UK
 
Yann04 said:
Agreed, but since most major diagnostic criteria have a 6 month clause (except the ICC, but the ICC is quite strict in other ways) doesn’t that become redundant?
Click to expand...

Well 'having symptoms identical with' does not require 6 months. The 6 month limit has I think been reduced by NICE 2021 but even at 6 months the recovery rate is likely to be higher than for established ME/CFS. I guess the question becomes what more is said by saying 'they have ME/CFS'. In some situations it may be very appropriate but maybe not in all.
 
IoM has "lasts for more than 6 months" as a criterion. The new NICE ME/CFS guideline specifies "confirmed after 3 months of persistent symptoms" (s1.3.2); the previous NICE guideline, CG53, specified 4 months in an adult and 3 months in a child or young person (s1.3.1.1).
 
Jonathan Edwards said:
It's a fair question but there is a reason for being cautious.

ME/CFS as a concept is not just a concept of having certain symptoms now. It is the concept of having certain symptoms that are very likely to go on for a long time. Chronic bronchitis is defined in terms of symptoms that go on for a long time. Someone may have all the symptoms of chronic bronchitis and yet be completely free of them by next month.

The problem for Long Covid is that there is good reason to think that at least two thirds and maybe nine out of ten people will get reasonably back to normal after a few months. They may continue not feeling as good as they did. It may be that Covid knocks people back in some way, like major surgery can, leaving them as if they were five years older. But that would be different from continuing ME/CFS.

The bottom line is that medical diagnoses are really much more about predicting the future than describing the situation now. They are there to tell people what will happen, including how likely treatments are to change what happens. For people who fit the diagnostic criteria for ME/CFS after Covid the likelihood of what will happen may be significantly different from other people with ME/CFS.
Click to expand...

Or it could go the other way and have less good prognosis being progressive or something. Most people who have long Covid do get better from the ME like symptoms in the same time maybe quicker than most people with ME recover from ME in the early years. But we don’t know yet longer term how it plays out for people with long COVID especially with Covid infections circulating everywhere, which will almost certainly change ME prognosis for the worse along with the rest of humanities but still.

As someone who got long COVID after having pretty classic & severe ME
I’d say also either ME like LC isn’t actually all that ME like or I’m just one of millions of people with organ damage or clotting disorders from Covid, who hasn’t been properly tested for these.

Having both is not like having ME but worse, it’s different. The symptom pattern is different and the symptoms are different. It shares many of the same symptoms in name, ones I already had but they didn’t just get worse, they are say chest pains but not the same type of pain, breathlessness not ME breathlessness, not in pattern or quality, not like asthma either. Those are just too examples but the cognitive problems are also still cognitive problems but actually quite different, I have amnesia not just oh no ME some stuff has gone missing, whole areas are missing and they don’t come back when I read material or I am reminded of stuff by others just. So I don’t remember my neighbours names, well
I remember their names but I can’t match the names up with the faces, now I was always forgetting names before but not on mass in a block like that. Maybe I had Covid stroke or something but whatever it’s different. Overall I actually experience it like a completely different illness. I’ve come across a few people with experience of severe ME and Covid from early 2020 and they report the same.


So I mean it’s post viral illness like all of them you have to rest and it’s horrible. It might be like some other virus that I’ve never had, but it’s not like post viral illness that I’ve already experienced and I have a lot of experience unfortunately. Four years in we don’t know where this one is going, I anticipate scientists finding many many overlapping findings about how LC & ME work but they’re also going to be biological differences I’m quite certain. (Maybe with every different possible viral or bacterial or fungal infection or toxic exposure within ME too I don’t know)

But I do worry about not applying the NICE guidelines for ME to people with LC and PEM



Oh just a doctor was able to identify when I had first had Covid when I told them my LC symptoms because apparently these are classic first wave and symptom patterns changed later so there may end up being different findings within LC viral generations too. I think I might have seen this already somewhere.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom