Should we be writing to scientists directly to inform them of ME/CFS as a worthy, interesting area they might like to consider. Isn't a problem...
I think it is good AFME are seeking patient feedback. The issue I have as expressed here is the fact that they often don't do a great job at...
It's less about cause than about establishing our abnormal PEM weakness on exertion, through 2 day testing. The research contrasting us with MS...
I'm not remotely capable of doing this, but if it's so widely available and not hugely expensive it's sad no one in the uk has had the interest or...
Interesting idea, the others could Stay the same.
The prognosis section suggests most people are just rising up to the surface - to remain mild - but not fully making recovery. Is this borne out...
But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.
It is a shame people can't just try melatonin rather than research funds having to prove it but aren't MEA funding a study? I think it's a shame...
I'd like the American CPET exercise testing done on a sizeable level to get that abnormality established as fact so it's recognised, especially in...
Yes you're right
Thanks for sharing all your in depth knowledge , whilst initially I was down I actually think on reflection it's pretty good news to have such a...
Thanks for that info. Whilst nothing is licensed for MEwe can struggle to get appropriate pain sleep and so on meds from GPs. One GP refused to up...
I thought Chias findings were through biopsy and no one else has done it to confirm or disprove. I thought doing biopsy in CFS wasn't typical...
TBH I think there is as AFME have the stance of ME=CFS, don't commit to any criteria or discuss these issues and we know that Drs are diagnosing...
Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than...
One concern is the evident fuzziness in uk regarding name, definition, criteria etc. So someone with predominantly unexplained fatigue might be...
Worth reading the 2016 service assessment & feasibility study dr nacul was commissioned to do mentioned above. I've read a 1/4 so far....
I thought people on here might be more informed than the average sufferer and therefore their responses would affect what "might" otherwise be...
In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant...
The service is for people who are assessed by their GP to have made limited improvement having been referred and treated by the ME & CFS service...
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