Review Advocating the role of trained immunity in the pathogenesis of ME/CFS; a mini review, 2025, Humer et al

Jonathan Edwards said:
I have read accounts of people suddenly feeling better dozens of times on the forum.
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That's what I'm basing it on too. Abrupt temporary remissions are rare, but not extremely rare. It's always possible that rare cases represent a completely different disease with a lot of similarities, but if the other option--that it's the same mechanism with a rare set of factors--is more likely, it's potentially useful for testing theories.

Here's a poll on temporary remissions on PR: https://forums.phoenixrising.me/threads/poll-have-you-experienced-temporary-remissions.77047/ 46% have had one or more. That's higher than I expected, and definitely not "extremely rare".
 
Creekside said:
That's what I'm basing it on too. Abrupt temporary remissions are rare, but not extremely rare. It's always possible that rare cases represent a completely different disease with a lot of similarities, but if the other option--that it's the same mechanism with a rare set of factors--is more likely, it's potentially useful for testing theories.

Here's a poll on temporary remissions on PR: https://forums.phoenixrising.me/threads/poll-have-you-experienced-temporary-remissions.77047/ 46% have had one or more. That's higher than I expected, and definitely not "extremely rare".
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I wonder if it's based on three people! I can't see the data.
 
I read a few posts on the thread. People were including a few days feeling better during or after catching a cold, and times when their ME improved, and the changes were sometimes gradual, not a sudden switch. We should not take such polls as scientific evidence. Similarly we should not take claims of recovery with LP, since a central part of LP is saying you have recovered. I'm not saying remissions never happen. I'm saying the quality of evidence is poor.
 
I've got a feeling Rob Phair might have posted asking for descriptions of remission experiences on S4ME. I'm pretty sure I wrote one, but I doubt it would have been PR, I wasn't really active there.

Trouble is I can't place things in time, so I've no idea when it might have been!
 
Creekside said:
The "can switch abruptly" requirement should at least reduce the number of theories to consider.
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Jonathan Edwards said:
I think that is an excellent point.
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What about 'Can switch slowly'? Or 'Can also switch slowly?' Some people gradually go into remission, or even appear to recover, but it's gradual. Doesn't the theory therefore have to be able to explain both a rapid switch and a slow one?
 
Completely anecdotal:
I know of one man that was bedbound for many years. He ‘woke up one day’ and was recovered, according to my sister that knew his daughter well.

I know of one man that reportedly recovered through LP. He was bedbound at worst, and has worked full time for years after.

I have no reason to doubt any of theses stories. Although I can’t confirm their diagnosis was correct.
 
Sasha said:
Doesn't the theory therefore have to be able to explain both a rapid switch and a slow one?
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Yes. The adaptive immune system (T and B cells) and the brain are complicated enough to cover rapid and slow shifts. (We may change our political views suddenly or slowly.) Innate immune cells are a bit simpler in their regulation and so the bone marrow stem cell learning idea seems a bit more difficult to give the required flexibility.
 
Similar to what @Trish has mentioned I'm sometimes somewhat sceptical about internet reports for various different reasons. We have often seen how questionable some studies are, reports on the internet tend to be far worse!

However, from what I can remember (someone should double check this), Flugge and Mella did report proper remission (rather than just "reported improvement") in some of their study subjects and that evidence is as good as any. Similarly the intramural study, which despite all criticism seems to be the most rigorous study when it comes to subject recruitment that has been conducted in ME/CFS, claimed remission in 2 out of 17 subjects. So I think the evidence suggests the possibility of quick recovery and that it's not too rare.
 
EndME said:
However, from what I can remember (someone should double check this), Flugge and Mella did report proper remission (rather than just "reported improvement") in some of their study subjects and that evidence is as good as any.
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From the study:
Out of 22 responders 82% were still in remission at 2–3 years and 68% at 3–4 years extended follow-up.
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I was unable to find their definition of remission with ctrl+f

https://www.s4me.info/threads/intra...-study-2020-rekeland-mella-fluge-et-al.14925/
 
Utsikt said:
From the study:

I was unable to find their definition of remission with ctrl+f

https://www.s4me.info/threads/intra...-study-2020-rekeland-mella-fluge-et-al.14925/
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I think this definition of remission is based on a combination of subjective repoted outcomes measures and some objective data (step count). So it does not necessarily tells us that someone is perfectly (or almost perfectly) healthy (rather than having gotten better a bit, having moved to a first floor house to accomodate their living situation better etc).

I think the remission I am talking about might have been from one of the other studies or they might have just been mentioned in conference talks.
 
EndME said:
I think this definition of remission is based on a combination of subjective repoted outcomes measures and some objective data (step count). So it does not necessarily tells us that someone is perfectly (or almost perfectly) healthy (rather than having gotten better a bit, having moved to a first floor house to accomodate their living situation better etc).

I think the remission I am talking about might have been from one of the other studies or they might have just been mentioned in conference talks.
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The started looking into rituximab because of at least one case of full remission in an ME/CFS patient that was treated for cancer.
 
Trish said:
We have known for a long time that some people recover, especially in the first couple of years and young people. There is also a big problem of old definitions, misdiagnoses etc. I'm not sure whether anything new is being claimed here.
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Indeed, we're going in circles, none of this in new and has been discussed thousands of times, without any new insights, but I don't think that old definitions, misdiagnoses etc explain this in all situations. I think there is an argument that there are cases where the exact opposite happens (higher levels of rigor causing higher remission rates), which I suspect is not a new argument and probably has been discussed hundreds of times.

If your study isn't very rigorous in recruitment, then yes, I suspect it's very easily possible to get higher rates of recovery because you're capturing transient effects, post viral fatigue etc. If you become slightly more rigorous you might get lower rates because you've filtered out these more transient effects and are looking at patients that have been ill for longer but you haven't managed to filter out conditions that cause permanent damage say a hard to detect case of MS or a rare demyelinating condition or a rare manifestation of an autoimmune disease. However, I think it may be the case that if you're being more rigorous than that, because you're now trying to rule out all possible other conditions in your study, your remission rate might increase again, simply because things such as a rare genetic condition, which may be irreversible, has now been ruled out in recruitment.
 
I agree that any explanation has to cover both abrupt and more gradual remissions.

The word 'remission' could also be a bit (unintentionally) misleading. I don't think that a modest short-term improvement (hours-days, maybe a few weeks?) could be called a remission, nor that it requires any explanation beyond patients might just be doing less – managing their pacing better, maybe due to nothing more than random reductions in the demands imposed by their life circumstances.

I have not experienced anything that could be called an abrupt remission.
 
EndME said:
Similarly the intramural study, which despite all criticism seems to be the most rigorous study when it comes to subject recruitment that has been conducted in ME/CFS, claimed remission in 2 out of 17 subjects.
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Wasn't it 4 out of 17?
Within four years of participation, four of the 17 PI-ME/CFS participants had a spontaneous full recovery.
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Sean said:
I don't think that a modest short-term improvement (hours-days, maybe a few weeks?) could be called a remission, nor that it requires any explanation beyond patients might just be doing less
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No, in the discussions I've had over the last 20-odd years, people didn't mean that. They talked about remissions lasting years, as periods of greater severity often do, and the change in capacity was dramatic enough to call it 'recovered'. At least at first sight.

Seem to recall I wasn't the only person who, with the benefit of hindsight and greater experience, realised they probably weren't full recoveries. Still give my eye teeth for another one, though.



ETA: if these were changes in underlying ME/CFS severity, they may not need a special explanation. They could be similar to a mildly affected person progressing to severe illness, just in the reverse.

There are people diagnosed with ME/CFS (or something doing a good impression of it) whose severity levels have varied in both directions over periods of years or decades. We could just be talking about a pattern like that. All the people I've discussed it with eventually worsened again.
 
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We lack good up to date epidemiological, particularly given the advent Covid triggered ME/CFS.

It is pointless getting too bogged down in detailed argument beyond saying some people recover particularly in the first few years of the condition and in younger patients, though some of these may later relapse, however the majoring remain with limitations on their activity and health indefinitely.
 
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