Search results

No worries no my point is that we need to be logging numbers of pwme who are having DOLs or sections or deprivation of liberty placed on them. We need to be keeping an eye on whether this is suddenly something that is being done a lot more than it used to and we need to be doing so with a log...

and SSD doesn’t actually exclude having a biomedical illness or it even being the cause of distress (rather than the other way around) it’s such a strange one to have been signed off into the annals @Maat certainly the same ‘issue’ or source might be behind both ?

so when the treatment makes people more disabled long-term this sets it up that if any of the measures are capable of showing this then the rehabber would get fired because they will claim it 'must be the delivery, can't be the treatment' even though the research confirms it is the treatment...

indeed but as a coalition would they be well-placed for surveillance/getting the info from the different throughputs and then potentially the question of where the register is located and making it public etc would need to be someone within that or if you can think of another that isn't part of...

I'm doing a 'going fishing' for it. But I've found the following paper (not sure if it is the one I actually read at the time or another one they laid on top, which I suspect it is as this one has White and Chalder too): Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic...

I think this seems a reasonable issue to perhaps clarify and campaign for - whether the clinics themselves should be allowed to call themselves anything other than 'the rehab clinic', and certainly not calling themselves 'ME/CFS' and then only blindly offering 'old rehab'. On the basis that...

And to quote Michael Sharpe himself straigh after the new guideline was released he said that PACE and the treatment they oversaw in the clinics 'was only ever rehab' So it is the only thing they actually ever tried, trialled, offered. ANd definitely the only things we know don't work and...

post copied to the thread on a greenwashing-inspired term I think we need to be confirming our 'ask' and clarifying the picture so they don't just get to make it look like 'noise'. I think we need to be careful not to be kneejerk in just doing things. We don't go on social media just because...

copied post I think we need to be confirming our 'ask' and clarifying the picture so they don't just get to make it look like 'noise'. I think we need to be careful not to be kneejerk in just doing things. We don't go on social media just because we've got a slogan, but we get the picture...

I suspect that date has been a distracter and waiting for it might mean other things have cemented in It's absolutely reasonable that we should be asking questions as soon as there are obvious problems foreseeable to check that these are indeed being dealt with before they become such

PS on that last line: "In that scenario we could ask much more interesting questions not only about the biology of functional neurological symptoms but about the psychology of headache." I highly doubt that anyone has been stopping this crew from looking into the biology or biomedical of those...

I noticed that one if you are referring to (ironically) when he is describing the harm caused by gaslighting professionals and how that eventually causes physical harm.

I note the PEM / PESE one and this is pertinent because when they are trying to con another dept to take this on - despite there now being a whole different ball game with regards foreseeability - I think that this (PEM) and long-term deterioration are where the 'liability' lies for someone...

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?