[texasbigdata]

Further, here is landmark position paper from Mayo from mid 2021 [1] on ME/CF. It’s an absolutely brutal disease: absolutely no cure, no treatments, give or take 5% chance of ever beating it, and almost 50% of people are house or bed bound for the rest of their life and even more can’t work.

Graduated exercise (run 1 mile today, 1+X tomorrow) and talk therapy (CBT, etc) have been contra indicated for a few years now and the former can actually make the condition worse.

For something first diagnosed in 1958 (but observed since 1889/1880/1917, and also medieval times) to have absolutely no progress or even a unifying theory of how it works while it’s believed to impact up to a million Americans is absolutely baffling.

ME/CF is a total beast and monster of a disease. That’s why the suicide rates are so high.

[1] https://www.mayoclinicproceedings.org/article/S0025-6196(21)...

[DanBC]

Only some forms of graduated exercise are contra-indicated. It's important to note that exercise is still a feature of effective treatment for ME/CFS.

[texasbigdata]

Thanks.

[cpncrunch]

>5% chance of ever beating it

If you actually read the paper where that 5% figure comes from (Cairns,2005) you'll see that it is for untreated, naturalistic recovery. Looking at recovery after treatment (e.g. MRT) the figures are more like 30-35%. Heck, even the Rituximab trial resulted in 38% remission at 4 year follow-up just due to the placebo effect!

[texasbigdata]

If you read the more recent work, there's figures of 80/90/95%+ mentioned from the ME/CF national association as well as several of the hospital associated treatment centers.

I mean I hope you're right, and it's 35%+, and anecdotally and on a branch here, some of the eerily similar but inconclusive SARS, avian flu, and Covid linked cases seem to be recovering faster from self reported individual data points. But I can't prove this.

What's interesting, and seems to either support or intermingle with an earlier point you made is a recent paper that showed if you had childhood trauma you were (this might be the wrong word) either more susceptible or more likely to be in the MECF group. Which suggests, to your point, maybe the cohort has "weaker" psychological baselines. What's not clear, is once you get it, if that baseline is at all relevant to the actual disease (just like it doesn't matter if you initially got it from the Epstein Barr virus or another viral infection). But it sort of aligns with what you're saying.

However the counterfactual is hard to work against. We know CBT/ACT/DBT/etc are highly effective for other issues.....all these people that are essentially disabled (can't work, require care, often can't even be materially ambulatory). Why wouldn't the self select into CBT/ETC? And if you're right, why wouldn't you see a tsunami of self reported or clinically measured recoveries? And therefore the consensus articles would say "do therapy". But they don't. Theres an old medical school anecdote: listen to the patient sometimes they're telling you the diagnosis. In economics you could draw the comparison to the concept of revealed preferences; we don't have to go through all this hand wringing of mechanisms and (im arguing slandering and blaming the victim) others. If you're right, shouldn't you see these landmarks papers saying "hey xyz protocol of ABC therapy plus DEF manual therapy produces an XX% recovery". Where is that paper? Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.

[cpncrunch]

>And therefore the consensus articles would say "do therapy". But they don't.

The problem is twofold. [1] There is a widespread prejudice against psychosomatic illness. and [2] There have been some mis-steps, e.g. PACE trial which put deconditioning and fear of activity front and centre. This caused a huge and predictable backlash, as clearly some fear of activity is rational with this illness.

>why wouldn't you see a tsunami of self reported or clinically measured recoveries?

We do. See for example:

https://www.recoverynorway.org/

https://cfsunravelled.com/cfs-fibro-recovery-stories/

https://www.amazon.com/Recovery-CFS-Personal-Stories-Paperba...

But due to the prejudice, most people just get on with their lives once they recover. When you put your story out there (as I have done) you get hit with a huge ton of personal attacks and abuse. People deny you had the illness in the first place and they say incredibly nasty things about you. I see this on a daily basis.

>Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.

You do see some. Fred Friedberg. B Van Houdenhove. Wyller. etc. But most patients hate these people, or at least actively ignore them, because they simply don't believe it.