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https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-

For sure. It has had quite an impact on me, especially as I was quite young and genuinely thought it would help me..

I might try that, I have in fact been quite focused on the amount I do in a day, not a week or several days at ones. I do think I am gonna try tracking some things for at least a few weeks, because days lump together a lot..

I love that analogy!

How much payback is acceptable for you? I think I may be struggling a lot with "deciding" that, I obviously avoid things that cause significant PEM, but the smaller problems where I "simply" get a headache and cannot go outside for 4 days just doesn't feel that impactful (when I am not in that...

It sounds quite "simple", just don't do the things that cause PEM, but I am struggling to pace so much! My PEM is delayed by about 48 hours, which has made it hard for me in the past to recognize correlations in the first place. I think I can usually recognize what activities caused PEM now...

Something that would help me a lot, is just somewhere a list of all threads related to decodeME. I tend to just completely miss threads all the time!

Those are some very good points for sure! Personally the physical effects was much bigger compared to cogntive (although I was in high school, so its a bit different). I think if I had been able to use an electric wheelchair 2 years ago I would not have had to stop. Back then I hadn't even...

My muscle fatiguability only happens during PEM, most remarkably it happens in my tongue and chewing muscles, which causes a lot of difficulty chewing something like bread. The first few bites are fine, but after that it becomes increasingly difficult to the point even things like talking are...

I dont think saying that not having symptoms at baseline means they do not have me/cfs. I would just call the me/cfs, even if it may be (very) mild. It's just nearly impossible to make a diagnosis in those cases, as the majority wouldn't even go to a doctor for such things and just think they...

Natalies idea, assuming I am understanding it correctly, does make sense to me. A disease can have very different presentations, and I think it could very well be possible that a certain group of some unexplained disorder or symptom that doesn't currently fall under the criteria of what we...

I agree that it very much seems like mostly pseudoscience, but at least it isn't actively harmful. Sorry if this is a bit off-topic, but what do people here think about the whole HRV thing? It's tightly related, as HRV can change a lot depending on breathing patterns, but it often feels like...

They often post results like this on r/cfs, but it seems like they’re claiming more than the study actually shows. Am I right about that? I don’t have enough background to know for sure, but it feels like they’re jumping ahead a bit.

I prefer 1 page.

3 Years I had years of experiencing all of my symptoms, and possibly had PEM for years as a child (under 10 years old) but was able to proceed school normally and do sports. But often had headaches, fatigue, the flu like muscle pain, stomach aches etc (said to be psychosomatic). Also had...

I had one episode of extremely slowed movement a few weeks ago. It was a bizarre experience, hard to describe. It felt like walking through water, yet I was incapable of using more strength to move any faster. I have seen several other people describe this as a symptom of ME/CFS. I was wondering...

My ears do pop occasionally, but no idea if it is a "normal" amount. I did have a bunch of ear infections as a child and im pretty sure they have always done some popping..

Personally I don't think I did last time it happened. I felt so good, and I can't see a big reduction in steps after it stopped.

To me, the short improvement of symptoms after getting a virus feels more like the "banana diet". A lot of people I have spoken to, either with long covid or me/cfs after an infection, seem to have it, and its such a clear correlation. Edit: although i wouldn't considering getting a virus...