I wish seeing an RCT on an intervention was enough but as we have seen all too often the studies are based on subjective measures and the results...
No one is accounting for the trip to the lab/hospital, which is a huge extra exertion for ME patients and its variable per patient and how severe...
Free Open Source Software. Refers to software that is free to download but also will access to the source code so you can change the program as...
[MEDIA] A doctor who advises lifestyle changes to fatigue sufferers and gets poor ratings for not listening to their "bad" patients.
What specialities are in that multidisciplinary team matters. Its become a euphuism for a Psychologist leading some Physiotherapists as things...
I spend time promoting the researching charities when they do good work rather than doing a personal gofund me. I feel like it makes more sense to...
Given the MEAssociations very heavy moderation of its facebook page comments I imagine the forum is a place where any criticism would be equally...
Diagnosis is the gap. One of the challenges with DecodeME was it required a doctors diagnosis (regardless of criteria) before you could meet the...
There is a positive diagnostic (to an extent) for BPPV based on nystagmus. You can see the procedure for the diagnostic in the below video, if it...
One way to go about estimating it is to get a percentage and a count from individuals. For example mine would be 99% with 108 HCWers. Given enough...
"CDC-SI/Fukuda 1994 criteria" So just fatigue then not CFS by the more modern meaning.
The reason the government isn't doing anything is because they have an alternate explanation for it all and the message isn't coming from the NHS...
I am in one but most of them are not online and that is a necessity for participation. My experience so far is don't bother we are just there to...
Merged thread UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023...
Looks like a nice relatively simple diagnostic test. I really don't care if it shows up in other diseases, it just shows there is a common thread...
Dr Resia Pretorius has had the protocol including anti clotting and anti platelet since the beginning when they analysed the make up of the clots...
Long Covid papers have been pretty much outpacing ME/CFS at a rate of 4:1 all year. ME/CFS hasn't received any more funding but Long Covid sure...
There is a brain bank in the UK and with the NIH in the USA, there just isn't any researchers interested in bodies/brains from ME/CFS patients and...
In the USA they seem to be accepting patients more than in the UK and I suspect part of the reason is just their goals are aligned. Patients want...
That is some grade A gaslighting of Long Covid patients as Psychosomatic! Medicine is really struggling with the concept of illness.
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