The prevalence and impact of psychoneuroimmunological factors in ME/CFS: Effects and mechanisms of ACT (2019) Olsson et al.

In her recent lecture Trudie Chalder said

following on from this what she says strongly suggests that they are planning to do ACT trials on chronic fatigue in the UK. Hopefully (the way things are going) this will not happen but something to watch out for.

 

That's a weird questionnaire. It mixes so many concepts and as usual does not distinguish between "can not" and "will not". Complete waste of time and effort.

 

500CC of H20 to the face, perhaps? Daily until unhelpful beliefs about illness cease (no self-reporting, sorry, that's not robust).

 

would it be possible, that this forum develops a questionaire ... ?

absolutely not to "prove" or disprove anything, but really to get as many data together as possible..

e.g. to better define PEM, pain, various symptoms
like starting out with the main complaints (e.g. known things like "fatigue", "pem" ...)

and then add detailed info on physical status, means like hearing, vision, vestibular, bone, muscle ...
including what is perceived, what has been tested
and perhaps for each physical status thing what meds/supplements etc help

perhaps also distinguish whether people ever were on benzos, antidepressants (incl the types of them) ...

sounds like something huge, but such a forum could be a place for adding to research ...
it may be also usuable (or extended) for other diseases, like MS, parkinson...

alone the data collection from people with certain complaints could help in research to get better ideas ?

 

Leonard Jason has been working on that for a while. I think his team will likely produce something useful.

But psychosocial studies and trials use those questionnaires precisely because they are misleading and blur the distinction, so nothing would change on their front. That their questionnaires do not distinguish "can not" and "will not" is a feature, not a bug, because that's what they believe they're seeing, that our "perceived can not" is actually a "repressed will not".