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I was looking for a thread on 'the name' (and failed) and eventually convinced myself to go with a fresh post and it might be combined with one later. This is NOT intended to be a thread about discussing which name we should use in the ME vs CFS vs others 'broader arena' (see end of this...

Agree with every word you’ve said . Be good to see how much was spent on those staff and clinics too. Maybe some didn’t have such attitude issues. But this has demonstrated when me/cfs patients note there is an issue then it’s the staff being in denial when they look in the mirror not, as...

The other reason we are sceptical about rehab is that whilst you mention trials are being done fir eg antihistamines that comply with the regs drug- based treatment has, rehab decided that it would go for less and less robust methods even beyond its somehow exempting itself from those regs. I...

The mother Theresa example is interesting but rather apt in a number of ways to the ‘re-educate and rehab’ sellers. Including that they don’t seem to realise they are just pushing that and making themselves a nice job out of it that they don’t want to change (unlike those who’ve actually...

Blinkered or what. And it’s all about them in tone (aren’t we clever) why couldn’t the OT just say that they had to reduce her hours which at least meant her symptoms weren’t ’as bad’ but was no medical cure at all. Thanks @Kitty fir underlining not being able to work wasn’t them curing anyone...

They forget to mention that certain professions try things then observe with a conservative open mind, whilst other have been taught to blag ‘only the positive’ and claim results by forcing patients to eventually say ‘ok maybe I guess that helps (but not much if so)’ then go running off that...

And one so long that it batters even those not severe just to do half of one of them - and there are four of them ! over-exertion by questionnaire, and coercion are such major issues those with ME have had used against them for so long I cannot believe a charity itself has allowed this to...

Weird isn’t it. I trained as a runner many years ago before I got ill. No one used beads or nonsense. It was pre mobiles so we wrote our times in a book every session. And plotted them as a graph so it’s nonsense that these people don’t do this but instead get them to plot what they did. No...

And of course now I know the date it was planned and likely done it just makes me wonder whether what they are picking up is ‘within patient’ differences due to PEM and thresholds rather than being ‘across patient’ due to something different happening. bith are sort of possible because I wonder...

It makes me wonder slightly when you think of other generations where such things seemed to be more run of the mill seeming (but maybe that’s just tv books etc) of eg ladies taking a Valium thats what I’m having to base my guess at what those meds would be like - I’ve no clue? I can’t think...

Interesting before I got to that line I was thinking it sounds more like restless legs type thing. When I get those type things it tends to need either salt and water combos (ie awake a long time as body demand one then other etc) or iron. There probably are other things but I haven’t worked...

Agree. And I think of it as being there to get me out of danger eg when I’ve had to get to a medical appointment by train or something and it is engaging that to get me home to safety before I crash or just to allow me to even try it others try and hold this against us ‘as if we could’ but it’s...

Yep. Agree. Of course the issue I suspect is the professions lack of willingness to remove the toy from an old guard. As we see with the BACME stuff. So I agree 100% but I think there is an issue with removing the people involved from the power they collected, it turns out based on results that...

I think* on the drug front that melatonin might have been for cyp?

Good timing to bring this up given the recent blood inquiry/scandal in the UK you might hope that a campaign asking simply for transparency on these - which are historic / old documents from a similar time period (and said scandal showed up the issues that happened there in that context, in fact...

PS one thing I'm now utterly astounded by is that the 'twist' put on the remit is cited as being due to one paper: And yet the conclusion of that paper itself is that there was no relationship (even in its abstract): The relationship between health literacy and quality of life among frequent...

The middle one for example: Frequent attendances to a London emergency department: a service improvement project embedding mental health into the team (tandfonline.com) is the hospital where Carla is currently, and is from 2012 with a 12 month follow-up, so I don't know whether the...

@MelbME I don't know whether this is a side issue prompted by your question but not directly tackled by what you are planning or not. But sure as heck others are trying to use this tactic, and manipulating it with bad and biased reports on tiny numbers focusing on niche ideas to try and distort...

These seems interesting. Are they good news and how well demonstrated are they? Is there a thread on these anywhere yet?

Indeed. I too don't know whether indeed it is a tip of the iceberg where it is those who are financially or well-connected or with a great support network who are managing to get to the end of most of the actual cases. I have no idea whether anyone 'just' not being fed and generally neglected...