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

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".

 

I wonder if it's based on three people! I can't see the data.

 

In the messages below it says there were 25 descriptions in response to a question from Rob Phair. I don't know how many people contributed them, but I suspect more than three!

 

On the PR poll, 27 people said yes they have experienced temporary remission at least once.

 

I find that really surprising.

 

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!

 

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.

 

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.

 

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/

 

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.

 

The started looking into rituximab because of at least one case of full remission in an ME/CFS patient that was treated for cancer.

 

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.

 

Wasn't it 4 out of 17?

 

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.

 

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.