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This study is recruiting at the moment. It is still vague and all the previous comments appear to have been ignored. I've expressed an interest in doing it but won't as it looks like a waste of time and there doesn't appear to be any intent to ensure participants actually ahve ME/CFS.

Workwell suggest 2 weeks of rest, no driving to the test.....etc

The idea of sitting on a bike pre warm up is pretty abhorent, do they not know that for people with ME/CFS sitting is an aerobic activity.

It is odd that people with POTS were excluded given that orthostatic intolerance is a key symptom of ME/CFS. The familiarization concept is odd given that many people with ME/CFS will be made worse by the exertion of attending the clinic let alone getting onto the bike and completing a survey...

Yep, the calcium channelopathy theory appears pretty solid and new research findings by others are all fitting in with the theory. Chemical, food and sensory sensitivities appear almost overlooked by many of the researchers which is odd given how key these are to the condition especially in the...

When will Action4ME start working for ME patients? The PACE trial issues are not a lack of consensus issue. A lack of consensus needs at least two valid positions to be put forward. Action4ME never seem to be able to support objective science, the PACE trial conclusions are at best misleading.

Yes that is my worry. There is some pretty dodgy research that twists biology into a psychosocial pretzel.

Do we really want the post exposure to things that trigger an exacerbation of ME/CFS symptoms to be called post exertional malaise or does this just reinforce the idea that the disease is trivial and people feel a big off and out of sorts? Post Exertional Neuroimmune Exhaustion PENE as per...

I dont find fatigue an effective way of measuring my health other symptoms are much easier to rate and monitor as is my morning restin heart rate

Defining PEM is easy but measuring it subjectively and its frequency can be meaningless and fraught with misinterpretation. The NAM description seems accurate and it and the IOM description don't get bogged down in symptom lists. The key to a PEM definition in my opinion is its overall...

I've found that I can enjoy and feel good after exercise despite the fact that I will suffer PEM later in fact the more I overdo it the more enjoyable it is at the time. Doing my CPET test was marvellous. The 7 month severe crash afterwards was not. PEM can last YEARS/DECADES.

I'm a bit confused as teh questionaire didn't ahve NAM which i wouldl have choosen over IOM.

A definition can be multi faceted. I see heart rate data as a second tier of information and not the primary definition but for people pacing and controlling their environment as much as possible heart rate abnormality patterns caused by exertion/triggers appear to be distinctive. The heart...

I like the term exertion as to me it means anything that is not resting and it includes physical and cognitive - the other triggers need to be included as well.

Me too- I get little warning signs now that I am tuned into my body with PEM hitting like a truck on day 3 if I ignore Day 1's warning signs. On Day 2 I can feel on top of the world and wired to do anything. Now that I am HR monitoring I can see that my HR and HRV data are usually bad on day 2...

Don't all patients experience PEM if they over exert and/or are exposed to triggers.