The idea that PEM lasts a few days or weeks is at odds with some peoples reality of months/years/decades/may be never able to get back to pre...
I don't like the word bothered- my life has ended and I am devastated NOT bothered.
Yep an emotional drama sets off IBS for me. It is odd but I have a different symptom exacerbation pattern for different triggering events....
?? but there is not a hard physical ceiling. It appears that PEM fluctuates in relation to cumulative load and the triggering event. The impact...
Yes - our challenge is to avoid PEM at all costs so much so that we hope to score zero on frequency and zero on severity. This really leads back...
The IOM description resonates with me. In addition I think we need to add some of the objective signs of PEM. Such as PEM shows up in a reduced...
Exercise can help some people but the NICE issue is that because they don't do any physical functional capacity they have no idea who is suitable...
Great to see that at least one table raised HR pacing. It is also necessary to get food/chemical/environmental intolerances into the guidelines...
Our big problem is the lack of appropriate research. Most of the studies appear to still being designed by researchers with a bias and not ones...
From memory the USA Agency for Healthcare Quality - quotes some CBT studies as being mildly beneficial. They also make the point that ME/CFS has...
Mark Van Ness has a paper showing symptom exacerbation after the CPET test. This paper may help: Neural consequences of post-exertion malaise...
The NICE Guidelines appear superficially reasonable but because they fail to mention either the seriousness of too much exertion and fail to offer...
There is NOT nothing to offer there is heart rate based pacing. This is what thousands are using to get well and to minimise payback. It is...
My concern as you say when you look to the research there is little. Patients know that GET harms them but this is not clearly documented....
They studied MS and ME/CFS. Having a bio marker even if it is not exclusive to ME/CFS and even if it only selects a subset of patients is a huge...
We are experts at being patients but when it comes to complex bio science we aren't really in any position to comment. What these guys have had...
Yes Alem should be nominated
True but one twitter account by one person is NOT harassment.
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