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It's a long time since I was there and personnel have no doubt have changed - my estimation from getting on for two decades ago was: decent, kindly professionals doing the best they could with inadequate knowledge. I certainly don't recognise a characterisation of some kind of torture farm.

Most people working in the NHS have not signed up to, indeed very few including those working with ME/CFS patients, even know about the treatment philosophies of the BPS zealots. They may have misperceptions about ME/CFS but very few would actively seek to deny patients help and support that is...

Neocortex saves energy by reducing coding precision during food scarcity Zahid Padamsey, Danai Katsanevaki, Nathalie Dupuy, Nathalie L Rochefort Abstract Information processing is energetically expensive. In the mammalian brain, it is unclear how information coding and energy use are regulated...

Buzzword indeed - https://www.england.nhs.uk/personalisedcare/supported-self-management/ The wikipedia page on disease management is quite good in defining the broad territory https://en.wikipedia.org/wiki/Disease_management_(health)

From another thread:

I've had a brief look at it. I think it's the sort of thing that Forward ME could focus on. There could be a precedent here: https://www.hqip.org.uk/a-z-of-nca/#.YYlz6LrLfV8 It could be argued that following a suitable period of time for the new Guideline to bed in, say 6- 9 months and...

Do you mean this ? https://www.england.nhs.uk/clinaudit/ Sorry I know nothing about it.

Non committal bureaucrat language, at this stage I'm not sure it means anything other than if there are to be services for ME/CFS then from the funding perspective they're going to be rolled into the unhappily named Adferiad programme - English translation is Recovery, which of course sets up an...

Dated 08/11/2021 Reply to an email addressed to the Health Minister, Welsh Government, asking what action she will take following publication of the new Guideline.

This portal should work but I'm sure there's an address on the claims docs/the online claim pages. https://secure.dwp.gov.uk/personal-information-request/name

No I've had to request, and pay for copies of everything since at least the early 2000s, and that is across 2 GP practices and 3 hospital trusts.

After more than 30 years I'm still haunted by standing in the front hall of the kid's school on Monday morning, a seven year old and four old on either hand, being asked by someone at a table, with a form, the names of my children. I was completely at a loss, there was just no recall, and though...

We can only state what the legal position is and hope that anyone dealing with application, appeal etc can make use of it. At a rough count I've done 22+ applications through Invalidity Benefit(IvB), Incapacity Benefit (IcB), ESA, DLA and PIP, with several appeals, two first tier tribunals and...

I'm not sure if the wording is different for ESA/UC but the guidance on PIP makes it very clear that explicit diagnosis of various bits of condition are not at issue...

I don't think there ever was a legal basis for refusal on those grounds, though I'm sure it happened. There was a conflation of (at least) two separate problems - one was the introduction of the work coach system along with dodgy privatisation of that system, the other was PM Cameron's big play...

The Royal London Hospital for Integrated Medicine - as of 06/11/21 https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/chronic-fatigue-syndrome-service

:thumbup:

With the vague thought that it might be useful to have a breakdown of UK services I started going through the MEA specialist list - I soon found that a whole load of the links are out of date, so sending patients the MEA page is doubly deficient. Not to mention the MEA rider 'at your own risk'...

Surely not, not from the man who: When he was 50 he published his first book, How We Are. This is the first part of the How To Live trilogy. The world needs to listen carefully to this wisdom of 'how to live " - https://www.northumbria.ac.uk/about-us/our-staff/d/vincent-deary/

I didn't read it as that was what was being promoted - rather that patients with a symptomatic condition which would previously have meant they didn't start exercising until consultation with a health care professional as to what was safe for them to do, should now be be given the message that...