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Interesting. I've had a poke around old fb posts to see further. It maybe is a more mixed picture of recent times (I found a post as far back as 2012 when Pinching left when it seemed that was v biomed led, then more mixed since then) I've found this which was the MEA post about needing a new...

It is Cornwall I'm thinking of specifically with this because I believe that the service until very recently was seen as a very good one that was safe. I know that the person running that left but I don't know how many years ago, just remember the job description being discussed on somewhere...

happy to pee money up the wall on something not in the guidelines whilst claiming they are short of both cash and staff in implementing the necessary care for patients who might be at risk of dying, and unable to provide basics to mean someone can live independently safely. All I can think is...

Sicko stuff really isn't it. How can conversion therapy for certain things be rightly getting outlawed and slated and yet this type of awfulness is sliding in under the radar and being funded by taxpayers and done by people claiming to 'help' or care about physical or mental health...

I don't know why those interested in mental health or psychology can't just be happy/see it as sufficient part for them to play to point out that those with autonomic dysfunction should be treated better ie the lack of psychological uplifts is a harm in itself. If mental health matters, and...

More sophism then. Bring in psychological therapy based on the claim it 'recovers' people by using false-beliefs CBT then when that is debunked as being a type of conversion therapy for an illness that is real claim that psychological therapy is still due based on the terrible, damaging therapy...

Important start to flag this. So worrying (and the fact that noone really knows or notices this issue beyond ME community) that severe ME aren't included in clinics or research. Out of sight out of mind. The methodology acting as a filter effectively is an issue that needs to be flagged up in...

Agreed. It feels like there is a story behind that one given it would seem obvious some severe ME have ended up in certain situations. It 'seems' like the artificial divide to the extent of separate services has little justification and would hinder understanding of the fuller picture of the...

I don't/haven't had any direct experience but it seems worth flagging further afield as a question (maybe MEA could ask) given the context of it being awarded in April 2022 via this process. And thinking of previous notes elsewhere about how contracts can sometimes make it difficult for things...

Good article. Very much needed to be said. My few thoughts: - part of me wondered whether IAPT would 'eat itself' if going into more and more remote and scripted formats such as online with no person at all. Whereas the 'selling point' in CBT when debating it vs counselling was always that 'it...

Just looked up his constituency is North-East Cambridgeshire. It looks like Cambridge has a support group too but don't know much about that part of the world and whether that will likely cover it/have many from there. Or if they know him already to give an idea?

EXactly - remove ME (and any claims to guidelines and research not being debunked) and they really have nothing. It's just an exercise and think better house to send 'whoever' to that doesn't check what people have when they enter or monitor the safety or health of those once there. There is...

Can they in the interim change the patient cohort? And yes they need to work out how to get out of these things if there are renewal assumptions etc. and no changes in treatment are possible The only people these services seem safe for are those who don't have any health condition as far as I...

The picture I've picked up on from this - being ME-specific here is that it is the most ill that get told 'nothing for you' and the least that can access the services. And we all know that most once they realise what is on offer realise it will overall (inc travel) make them more ill as there is...

If it is the same one that was on the TV programme (trust me I'm a docor I think) then the phrase 'conditioned response' is something I mentally debate about whether it has either been stretched as a term or there is something else more strictly accurate. Given the drink was in fact medicine...

135day rule starts to sound even more important for charlatan-filtering. Could we come up with some catchy storytelling-style analogies for this one? I'm thinking there is material in the sector of hairdressers to cover a few of these effects

Indeed, just scary that the conclusion and abstract didn't underline absolutely with the side of common sense and history in their discussion of that 'non-finding'.

Thanks for confirming re: thread. Yes, that is certainly the impression coming through. Busy-work. I'd somehow missed the "was to allow the clinics to transition" confirmation I think but makes sense. I can't help read most of the many job descriptions, note the CBT or other specialism (CBT is...

This is a big issue I think in a broader sense. I'd like to see a thread on it in wherever the relevant place would be - noting this one is for services that individually can be addressed - discussing whether what we currently have is a set up where lots of the services saying they are for ME...

"nadir around August" I mean I can think of many illness-related reasons why it would be a certain point into peak or long terms that people would end up falling over, but I can't help but ask whether the researchers have accommodated for PHYSICIANS summer holidays. I know my dentists for...