Search results

Yes. The change to Clinical Commissioning Groups across the country increased the already existing 'postcode lottery' in the availability of treatments and funding of many conditions, not just ME. Most of the public still do not understand what has happened in the NHS and why there is such a...

This paper is available on Sci-hub. I'm not giving a link as these keep changing.

That's just inspired me to start a new game!

I think this is a big problem with the NICE guidelines. I've never looked at most of them but, for example, with the autism ones this information is in a much larger guideline that is available on a search, but not the main guideline that clinicians and patients use (now also called a 'Quality...

To be pronounced Bam! - 'eck! (heck)... Cross posted with @Hutan!

I found that over the years more of my GPs keep insisting on referring to ME as 'CFS' (for example in referral letters), which seems to be what the NHS coding systems states is the 'preferred term'. So for that reason I encourage my current GP to use the compromise term 'CFS/ME', which is...

Wish I had kept the pair of gardening boots I found out in my utility (side building on my house I use more as a 'shed') in the spring - they had had a brown house mouse (the ones that really stink, as opposed to a field mouse) living in them. It made me wretch when I pulled them out of the bag...

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...