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and this is a sidenote to this thread so I paused. But another urgent to start one (even though it might not change things for those experiencing it right now, although it might) is: ForwardME need to begin a register and put it somewhere very public of the number of pwme who are attempted to...

Personally, I think one straightforward starting point is to put this picture together. To show what the 'reaction' has been to the new Nice guidelines ie what seems to be 'being built' vs what we were given the impression was required and would be instituted. ie make the 'context' that is...

I'm probably going to blow things now and ask whether you are on the wavelength enough that you would know what I mean when I say I'm tip-of-tongue reaching for a term that is something like 'greenwashing' going on and yes some getting used as useful idiots as part of this process. Partly...

2. is write down what is being said 3. is have a diary at home: to give you objective data, collect thoughts (confirm to yourself you are ill) etc - pertinent to discussion on measures going on currently I think here on other threads if people are being suggested what to write and how to see...

I struggle a bit with something that has that interactive element, it is just my personal thing there that I'm not a fan of when soemone is reading out comments people are making as they go. He does well at noting the harms of gaslighting at the start which I think it is important actually get...

:) I have just realised from looking into this and noting the circularity how useful a question it was to ask. A lot of worries for pwme at the moment seem to be coming from us getting thrown under generic 'long term conditions' or 'chronic illness' rehab/'treatments'/ideologies without...

I might just be missing where I wrote this in my initial comment, but I intended to emphasise this and now can't see it: YOu might want to look at the references in Caroline's article too, in case there are any that might be useful re: MUS, and go from there?

I'm getting quite disturbed going through this. Appreciate anyone else who wants to pick away at this too, as there is a certain amount of short bursts needed because of how shocking it is when I realise how many areas they have 'gone at' over the years to create some add-on. Some of these are...

On the note of clinical assessment, I've just looked up @Caroline Struthers brilliant article for a thread elsewhere ( It is not only drugs and devices that can harm - HealthSense (healthsense-uk.org) ) And the following paper was referenced, which has its own thread and I think is worth...

Instead of treatment of course.

this feels like it could operate in an inverted way: if GPs (the medical part) are told to refer to clinics on the claim they are 'specialist' but they aren't medical and can only do 'rehab' which isn't appropriate because that is only safe for those who are being medically treated and then GPs...

I remember an article that was in a more hard copy type publication - health sense? or healthwatchUK? that had @Caroline Struthers as author regarding MUS? AHA! It is not only drugs and devices that can harm - HealthSense (healthsense-uk.org) full newsletter: The HealthWatch Newsletter...

The posts in the following thread are particularly disturbing when you add it in: UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment) | Page 29 | Science for ME (s4me.info) I hope @Maat won't mind me quoting...

It is the classic putting us under rehab without treatment, as if that makes it any different to the old guideline issue ("no treatment based on the principles of false beliefs and/or deconditioning" = re-education and re-enablement, we have thesauruses too) I am starting to think - and it...

The PROM section: "6.2 PROM (Patient reported outcome measure) The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006...

OK so I have noticed the BACME severely affected guide has a section on outcome measures: BACME-Severely-Affected-Shared-Practice-Guide.pdf on page 42-43 These include sections on: - why use outcome measures? - PROM - CROM (clinician reported outcome measures), for which there is a link to...

And this was when they had the long term 135 week follow up (which should be long enough to say that’s a sign of how much they are likely to recover particularly if you map it as a trajectory from earlier measuring points) and had objective data both of which they just arguing about choosing...

I've taken a pause before looking properly at the last two papers. But, as you've mentioned it, one is on headache and the other migraine (Migraine associated with conversion disorder (Babinski's migraine). Analysis of a series of 43 cases - ScienceDirect ) The headache one...

Reference 55 relates to Cauda Equina Syndrome - in particular scan-negative vs scan-positive (MRI): The clinical features and outcome of scan-negative and scan-positive cases in suspected cauda equina syndrome: a retrospective study of 276 patients | Journal of Neurology (springer.com) It...

Reference 54: CRPS_FND_manuscript_150818.pdf (dundee.ac.uk) Maybe this is the one that mentions 'surgery' because they do say in their introduction: "Complex regional pain syndrome (CRPS) is a disabling chronic pain condition that may follow physical injury to a limb, either through surgery or...