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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 trigger functional capacity.

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. Chemicals and food lead to a "coma" wiped out sleep. Exercise to a sore throat, headache, glands. Cognitive - tinnitis...Eventually if I don;t rest the...

?? but there is not a hard physical ceiling. It appears that PEM fluctuates in relation to cumulative load and the triggering event. The impact changes over time. I think it would be good to devise a series of PEM tests for people doing the same task and both a between people and individual...

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 to the need for our physiological abnormalities to be measured. It would be far more useful to know how much time we spent over our anaerobic...

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 (or if really over exerted an increased) morning resting heart rate compared to average morning resting heart rate the next day. Along with a much...

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 for it etc...and they aren;t monitoring or manging it.

Great to see that at least one table raised HR pacing. It is also necessary to get food/chemical/environmental intolerances into the guidelines and the ease of identifying them with HR monitoring - these are a nightmare especially for anyone needing care outside the home and/or medical/dental...

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 that are listening and believing patients e.g. Fred Friedberg of StoneyBrook University using HRV and heart rate monitoring in a study but NOT in the...

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 not been studied.

Mark Van Ness has a paper showing symptom exacerbation after the CPET test. This paper may help: Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Dane B. Cooka,b,⇑, Alan R. Lightc, Kathleen C. Lightc, Gordon Broderickd, Morgan R. Shieldsb...

The NICE Guidelines appear superficially reasonable but because they fail to mention either the seriousness of too much exertion and fail to offer any guidance on how to determine whether or not a person needs to rest more or has the physical functional capacity to be more active and or tolerate...

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 research based and patients are using it. Heart rate based pacing is NOT a treatment but is an effective management tool. There is a lot of literature on...

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. Doctors want to help patients and there are thousands of patients benefiting from heart rate monitoring and their response to exertion is both highly...

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 step forward. The validation of biomarkers is going to take years. It appears that ME/CFS is very common and to go from a disease that people think...

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 their papers floating around for a few years now and no-one has torn them apart. The bio-marker may not be exclusive to ME/CFS but proving biological...

Yes Alem should be nominated

True but one twitter account by one person is NOT harassment.