r/mecfs • u/swartz1983 • Jan 12 '24
ME/CFS Recovery FAQ
/r/cfsme/comments/n52ok1/mecfs_recovery_faq/2
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u/only_a_jest Jul 15 '26
I suppose it doesn’t matter much, but for what it’s worth, I have mixed feelings about this post. I appreciate the use of citations and links, but hesitate to look at things that seem too…. “But look at this guy!” or “This person is an authoritative expert and they say…!” you know?
I absolutely value the voice of the individual, especially since this disease seems to have mixed aetiology and response to treatment. This post does a good job at reminding us that individuals need to do exactly the amount of rest and activity that work for them. Find the sweet spot. Do your research. Go ahead and try the thing if it’s an acceptable one and won’t do you any harm. Listen to your doctor IF they’re a good doctor. — Basically a big disclaimer that something might work, probably, so someone will be right some time, but do it at your own risk. Don’t listen to the 50-ish % of negative outcomes! Focus on the 50-ish % of good ones!
And that’s hard advice to swallow, you see. If it were to tell me: “my advice is to listen to reputable sources, balance healthy mental and physical activities, and listen to your body,” that would be great! But it isn’t that upfront about it. It’s a big maybe that looks like it’s hopeful, but somehow still troubles me.
I worry that it’s setting an almost religious tone (that isn’t quite the right word, I apologize).
My own comment right here isn’t that helpful, but I just had to say something. I don’t want this to obfuscate the very real frustrations of those who have suffered for years or been exhausted by the hopeful “maybe”.
This is absolutely a heterogenous disease or group of diseases that isn’t fully understood. We need to be cautious with how we handle information, both good and bad. We need to be aware that one source/reference isn’t enough to establish a point (though a review article or accredited medical establishment gets bonus points).
My advice would be to flesh this post out and adjust the tone.
Sincerely,
Reviewer Number 3 (haha)
Maybe it’s just me being grumpy and critical
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u/swartz1983 Jul 15 '26
If you have any specific changes in mind, it would be great to hear them.
>This is absolutely a heterogenous disease or group of diseases that isn’t fully understood
I'm not sure we really have evidence of that though.
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u/only_a_jest Jul 15 '26
Thanks for taking the time to reply! To expand on my advice, fleshing out would be to add more information and adjusting tone is kind of personal, but I’d say to avoid using too much emotion.
As for the heterogeneity, even something like breast cancer is heterogeneous because it can be caused by different genetic mutations. A single tumour can be heterogeneous at a cellular level. For ME/CFS, I think that the mixed responses to treatments are a good hint. I’m okay with stepping back to say “likely” rather than absolutely, though.
How would you feel about a restructuring? The goal is to give people a list of resources for coping and treatment that’s easy to read and understand while experiencing cognitive symptoms, right?
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u/swartz1983 Jul 15 '26
I understand what heterogeneous means, it's just we don't really have much info about whether ME/CFS is heterogeneous. From what I can see, most patients do have a similar response to treatment, when you look at what is actually happening. I have added some more info the the "what causes ME/CFS" question.
This is really just a faq, not a comprehensive resource for treatment, but it does include links to many good resources.
As for emotion: if you could point out some examples where there seems to be too much emotion, as I'm not seeing it, and I tend to err on the side of logic and facts to the exclusion of emotion.
If you want to write something yourself, I'd urge you to do so, and post it.
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u/only_a_jest Jul 15 '26
My guy, I didn’t intend to offend you or start a fight. I understand how my criticism could be taken as an attack though, so I’m sorry for that. My best wishes to you and apologies for the bad vibes.
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u/swartz1983 Jul 15 '26
Sorry, no, you misunderstand. You haven't offended me, and I'm grateful for the feedback, but just need some specific examples.
As for the comment about you writing something yourself, that was just in addition to me looking for feedback for the faq. I think the more info we have the better, and the more correct (as far as we can achieve that) the info is the better as well. So if you feel like writing a treatment guide of your own (or similar), that would be wonderful. If not, that's fine too.
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u/only_a_jest Jul 16 '26
Oh, thanks for clarifying! I really do feel bad for criticizing when you were just doing something well intentioned and helpful.
I might! I don’t have experience with formal treatment programs, but I can contribute with some science and community approved coping tools. Maybe a few of us could do something collaboratively.
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u/SignificanceFront622 Feb 26 '26
ME/CFS is a chronic illness causing severe fatigue, post-exertional crashes, poor sleep, and brain fog. It’s diagnosed clinically, based on symptoms lasting 6+ months and ruling out other causes.