There are probably others on the forum who understand the history of BACME much better than myself. I have only got involved in patient...
Indeed, it took me about 20 years after my diagnosis to admit to the possibility I might never get better (without science finding a cure). Even...
From what I've heard of her on various radio programmes she does seem to understand how severely ME patients can be affected and comes across as...
It looks like a fairly neutral prevalence study but I still found my heart sinking when I read it. I suspect it is being done to support 'empire...
So the comparison for PWME is that it (Edit, that is, GET) is like using blood letting to treat haemophiliacs?
Do we have a thread on the forum on this study? Mod note: The study was published in 2022 Severe myalgic encephalomyelitis/chronic fatigue...
I am guessing BACME was set up after the introduction of the 2007 NICE guidelines because there was subsequently national funding provided to set...
They are an organisation for professionals but state they have patient representatives. The names of these reps are not provided, but the Sussex...
Yes, I was definitely thinking over the long term, in years not months. Edit: In the same way Action for ME is gradually moving in the right...
So presumably as the new NICE guidelines covers children and young people they will make this guideline redundant and it would need to be removed...
Yes, all I am realistically hoping for from the revised NICE guidelines is that they make clear how serious a medical illness ME is and that it...
I think with decent NICE guidelines there is potential for this. Many professionals may not have wanted to join this organisation because their...
If Sussex and Kent are a member of BACME, and to be a member of BACME according to there written terms you have to agree to support the...
So here we have the RCPCH being referenced. Presumably Crawley writes any paediatric 'CFS' guidelines for that Royal College.
Yes, that was my immediate thought - by this criteria they shouldn't have any members, hence not exist at all. However, it is feeling more and...
Is any other patient group a member of BACME?
This has made me realise how much international collaboration we now have in the ME community, both at patient and at research level. We are so...
A ME/CFS research organisation that decided to call their journal 'Fatigue' sets off warning bells in my head.
I expect the long term Long Covid sufferers will be seeing the similarities more and more. Once people have had Long Covid for over a year (so...
A comment from an Australian signee @rvallee
Separate names with a comma.
