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There are probably others on the forum who understand the history of BACME much better than myself. I have only got involved in patient discussions since joining this forum, I've never had any other patient group involvement. I joined here because I was aware that NICE was finally reviewing its...

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 in the subsequent 10 years I still have some hope, but I am more realistic and I accept the need for my GP to support me with DWP applications that...

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 sympathetic and caring, but she still conveys that it is a condition that can be 'rehabilitated' or naturally improves over time. She never explains it...

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 building', providing 'evidence' for the need to roll out online CBT programmes or for Crawley to be able to set up more clinics like the Bath one in...

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 syndrome in children and young people: a British Paediatric Surveillance Unit study 2022 Crawley et a

I am guessing BACME was set up after the introduction of the 2007 NICE guidelines because there was subsequently national funding provided to set up specialist 'CFS' clinics across England, so the professionals working in these clinics 'needed' an official body to represent themselves, network...

They are an organisation for professionals but state they have patient representatives. The names of these reps are not provided, but the Sussex and Kent patient organisation is a member, which would indicate that their patient representatives are drawn from this group.

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 direction, but still needs to be challenged when it gets things wrong.

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 given it is now over 16 years old. Edit: I haven't had time to read this yet, thanks for linking it. It will be useful to see how this guideline...

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 exposes the 2007 guidelines for what they were/are - eminence based medicine. That ME/CFS can be a long term illness(decades, not years) and people with...

I think with decent NICE guidelines there is potential for this. Many professionals may not have wanted to join this organisation because their terms state they expect members to support the implementation of the (2007) NICE guidelines and the RCPCH guidelines (which Crawley must author). A...

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 implementation of current (2007) NICE CFS/ME guidelines and also the RCPCH's 'guidelines on CFS', (which cannot be anything other than code for supporting...

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 more like we are in an alternate reality so perhaps we need to learn the laws of this one...

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 much further on than in 2007 in this regard and much stronger as a community. It is also showing up where any so called patient charity is an 'outlier'...

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 beyond the time most post viral illnesses resolve without treatment) they will find themselves completely abandoned, just as most ME sufferers have been.

A comment from an Australian signee @rvallee