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of course there is a difference between being genuinely unaware and choosing to not acknowledge and for/due to bystanders 'choosing not to look', so the old issue of getting caught/that thing about "did the tree really fall in the forest if noone hears it" being the only real driver (external...

I've just had a look through the general website. It is an interesting one and I don't know the situation regarding whether they are battling the same issues with guidelines and poor treatments etc? And whether the composition for their guidelines has any complications of different schools or...

I guess it’s actually evidence-washing , but the issue is what they are trying to wash away is the fact that what they called evidence was called out as having its pants down for cfs so they washed it thru the generic rehab where you just need to call ‘orthodoxy and assume’ as pretend sophist...

Yes - I didn’t word it well but was meaning of the 173 references on here. As it purports to be some sort of review Only looked at 9 and 8 were UK and stone, sharpe, Carson were in most of them be interesting to look further and see the actual spread of the rest.

interesting. so the money flowed first and then this was about them trying to explain that they weren't just a big old wastage-hole Shame we don't have a few more people like this in the ears of the correct people reminding them that maybe the gamblers fallacy issue with the dept and staff is...

Oooof! certainly right about it being a fantastic sum of money if 16% of the NHS budget was spent on psychosomatic illnesses in 1999. I'm assuming that means 'being given to those who are working psychosomatic depts' on the basis of the note regarding questions of how much of that was...

:thumbup: Brilliant

I agree however my issue is trying to tackle and highlight what has gone on with no change to what us being offered vs old guideline trying to be hidden fir me/cfs and I worry that whilst that might be a side hashtag they will cherrypick it to just distract a valid issue into the same debate...

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...

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...