Did this survey clearly differentiate between those patients who met a strict ME diagnostic criteria with PEM and other symptoms, and those who...
Yes. I felt this is still a major issue in the new guidelines. It's another reason I don't like the widening of what were originally specialist...
I hope that the publication of the final NICE ME/CFS guideline will serve to set a precedent for NICE in terms of them learning how to put a stop...
How did you do that?
Here Trudie Chandler explains what CBT for 'CFS' is: [MEDIA] Edit: For some reason copying the web link automatically just brings up the...
I think there is the historic problem that ME/CFS has been treated like a mental illness, where the 'recovery model' is the norm, even for...
Definitely nothing to do with any criticisms of the PACE trial :rofl: Also, when did she stop being the Chair of BACME? Presumably this role was...
Your experience pretty much mirrors mine, although I can't use anything like compression wear due to my skin sensitivity (I've had this since a...
This would be the same Gabrielle Murphy who resigned from the NICE guideline committee because she couldn't support the finalised revised guidelines?
Yes. This would seem to point to the fact that their is an underlying pathology (or pathologies) in ME. That is why I am very cynical about the...
Yes. it seems from my reading of the standard fall-prevention clinics that they think falls are due to 'frailty' and their courses are only aimed...
Understanding why PWME suffer from falls and working out the best course for falls avoidance in ME could be the sort of area that the NIHR might...
Although I wouldn't currently trust them to be competent to do this at the present time!
It might be useful if all the specialist ME/CFS clinics offered patients ME specific fall avoidance courses, both as an outpatient and via a...
I think the problem will come in the funding model, with funding being spread so thinly that these general fatigue and pain clinics will never be...
I think a big issue is that our specific symptoms are not even asked about, much less recorded by clinicians. Instead the 'chronic fatigue'...
Absolutely, alarms bells rang for me too when I was re-reading these documents last night. I think we need to be very aware that these 'fatigue...
Or are they just pleased that their lives are made easier in the same way that GPs are happy to consign difficult patients to the 'MUS' IAPT pathway?
It seems Neurologists have solved everything there is to know about medical neurology that they can be so certain that any symptom pattern or sign...
In other words, patients have 'neurological signs' that don't fit other established neurological disorders (e.g. Parkinsons, stroke), well,...
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