Severe Long Covid that is not also ME/CFS?

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Felixm99

Established Member
In the newest study by Wüst and colleagues, they have both a Long Covid and a pre pandemic ME/CFS group. Both groups fulfill CCC, so experience PEM.

My question: is there any research into severe Long Covid (e.g. at least 12 months and disabling) that does not also fulfill ME/CFS criteria?
I know that there are may people with persistent problems after Covid that would qualify as Long Covid but are any of these really disabling without also being ME/CFS?

(This is my first post here I hope I didn‘t f something up)
 
Felixm99 said:
In the newest study by Wüst and colleagues, they have both a Long Covid and a pre pandemic ME/CFS group. Both groups fulfill CCC, so experience PEM.

My question: is there any research into severe Long Covid (e.g. at least 12 months and disabling) that does not also fulfill ME/CFS criteria?
I know that there are may people with persistent problems after Covid that would qualify as Long Covid but are any of these really disabling without also being ME/CFS?

(This is my first post here I hope I didn‘t f something up)
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The Wust study is an outlier in that they specificially recruited LC patients meeting CCC. That is unusual.

The usual approach is just to study long covid patients. Some studies go on to identify different subsets and phenotypes. So yes, there is a lot of research on all forms of long covid, but all forms of LC are usually mixed together in the cohort. I am not aware of studies that specifically targetted non-ME/CFS LC patients.
 
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I met a Long COVID patient in a self-help group who still wasn't back to work after two years, but clearly didn't have ME/CFS. She had been extremely unwell during her first year with severe fatigue and neurological issues, but she had no PEM and was slowly recovering. I immediately wondered if she might have suffered from COVID-related brain inflammation—many viruses, including the flu, can in rare cases reach the brain and cause significant damage. She later mentioned that her neurologist confirmed brain inflammation was indeed the most likely cause of her symptoms.

Here is another case that I've always felt had nothing to do with ME/CFS, but rather fits the aftermath of a resolved viral brain inflammation:https://www.woz.ch/2507/ein-erfahrungsbericht/die-welt-war-zu-viel-fuer-mich/!EFRNPJERD3VF
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I think the field would benefit by clustering Long Covid studies into non-ME LC and ME-like LC.
The difference between someone who can‘t smell or taste after covid and someone who developed ME is just astronomical, yet so many Long Covid studies treat these basically as the same
 
Other rare and severe forms of LC that aren't ME/CFS include chronic COVID in patients with compromised immune systems. I've read about cases like these, and they are often lethal. Akiko Iwasaki has provided the clearest subtyping of LC so far—if I recall correctly, she differentiates five types, with ME/CFS being just one of them. The other subtypes can be just as severely disabling, such as the direct lung and tissue damage caused by the initial infection.
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Felixm99 said:
I know that there are may people with persistent problems after Covid that would qualify as Long Covid but are any of these really disabling without also being ME/CFS?
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Long Covid is of course a very mixed bag. I think quite a big percentage of Long Covid are the direct effects of the infection and of the treatment on older people who often have various co-morbidities. So, things like lung, heart, kidney damage. Some people are very likely to have been disabled, particularly because they probably weren't in great shape to start with.

I think any study that only or primarily includes hospitalised patients will have a big percentage of people who have been disabled by the infection, but who do not have ME/CFS. Possibly, some might have ME/CFS as well as organ damage, but, because there is another reason for their disability, they would not get diagnosed with ME/CFS.

I do wonder about the people with organ damage that can be seen on scans. Technically, they have Long Covid, but I wonder if the tendency is for them to at some point be diagnosed with the organ damage, and to lose the Long Covid diagnosis.
 
I may be wrong but I feel that researchers have not adequately distinguished between Long Covid that is a result of one off damage arising during the initial acute infection, be-it to the respiratory system, the heart, neurological, etc, and Long Covid as an ongoing disease process as with those where ME/CFS has been triggered.

Obviously if the one off damage was severe enough the resultant Long Covid would be severe, though you would expect it to be stable or improve over time, unless of course something else was subsequently caused additional damage. For me the interesting question is there a form of Long Covid, that does not include ME/CFS that also involves some form of ongoing disease process, meaning it could also get worse over time?

I suppose this is confused by the suggestion that having had Covid you are more at risk of subsequently developing other conditions such as heart disease or stroke. Here the individual’s health would be deteriorating over time, but can such be meaningfully described as an ongoing Long Covid disease process?
 
Felixm99 said:
I think the field would benefit by clustering Long Covid studies into non-ME LC and ME-like LC...
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Page of ME:
Leading LC researchers like Iwasaki, Wüst, and others have actually been doing this for years. I fought against the mixing-up of all these different LC subtypes and ME/CFS in patient spaces for a long time—and got a lot of heat from a kind of boundary-less, free-floating, astrological-Pisces type of patient advocate. "We are all in this together! Nobody must be excluded! You are so mean!" I heard that over and over.

But then I realized that the most talented researchers have been carefully differentiating LC suptypes and learned about ME/CFS from the very beginning. As for those who don't, no valuable results can be expected from them anyway, in my view. So the continuous conflation in some corners isn't actually a real issue for the science.
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People who suffered stroke or major lung damage during acute Covid will remain very disabled. So yes there are non-mecfs disabled long covid cases if long covid is defined broadly as it tends to be in studies. The patients who invented the LC term almost certainly wanted it to refer to the mecfs picture though.

Sadly it seems to be just a matter of checking through each study to see what in includes. I think it is probably important to look carefully at time frame though. A lot of cases up to 6 or even 12 months are likely to be self limiting and may not tell us useful things about longer term mecfs.
 
Felixm99 said:
For treatment trials, it would already be helpful to require participants to be ill for at least a year since there seems to be a lot of natural fluctuation in LC in the first year
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Completely agree. At this point for studies where recruitment isn’t a big hurdle I’d say even two years. We are 6 years in and there’s plenty of people who’ve had Post-COVID for two years or longer, but the epidemiological data seems to suggest the majority of those who recover do within the first two years.
 
RECOVER had a couple of attempts at grouping patients to define subgroups and the second one basically ended up mirroring mild->very severe. IIRC PEM was a lot more prevalent in the most severe groups than the mild ones which tended to have plenty of loss of taste and smell. There is however a percentage of people who were put into the severe bracket that did not have PEM. I would have a look at both those symptoms studies and especially the second one as while it fails to assess ME/CFS criteria it does ask about the symptoms of ME/CFS.
 
I didn't experience PEM, I felt fatigue and needed to lie down, or delayed PEM until 7-8 years after initial sudden viral onset. I did aggressive rest therapy and felt almost recovered . . . until I started exercising again, and that was first time I experienced delayed PEM.


I didn't have OI or reduced cognitive energy or 'brain fog' until after I started exercising again when I felt almost recovered. I think I'm the minority.

I wonder sometimes when exactly PVFS for a few years switched to ME/PEM. I think it was in the cards from day one.
 
Mij said:
I didn't experience PEM, I felt fatigue and needed to lie down, or delayed PEM until 7-8 years after initial sudden viral onset. I did aggressive rest therapy and felt almost recovered . . . until I started exercising again, and that was first time I experienced delayed PEM.
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Could you describe aggressive rest therapy or the version you did? I'm genuinely curious what it is and what makes it different from what e.g. patients with severe and very severe ME/CFS are doing.

Apologies for going off topic. I keep seeing you mentioning it and it never seems the right place to ask.
 
Sure.

I wasn't severe, but I wasn't able to stand or walk for more than 10 minutes at a time for years. I needed to lie down a lot and it wasn't from what I describe as OI like I experience now. I didn't have many symptoms except normal PVFS. I didn't have insomnia or pain. My immune system was more stable back then, and felt very different from how I feel now , with constant reactivations of viruses b/c of a weaken immune system.

Proactive and preemptive resting, continuously even during moments when I feel that I had enough energy to do an activity, so rather than waiting until I'm feeling unwell or the need to lie right away. It requires a lot of discipline, and I was fortunate to be able to afford meal preps and healthy food orders during that time so I didn't have to cook. I trained myself to lie down and enjoy being quiet. Just breathing. Boring at first, but I was able to calm my nervous system.
 
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