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Perhaps this could be the prompt? If they are aligning themselves with BACME's philosophy, then at least we know where we are with them. If not, I doubt they would be happy to find themselves allied by implication. I don't tweet, but would anyone be prepared to contact Workwell, providing a...

This is why I wonder if it would be worthwhile to contact him- Firstly, so if AfME are being word-weasels and twisting/ "interpreting" Workwell's comments, they are held to account and publicly corrected . Secondly, to make Workwell aware of how easily their comments can be misconstrued and...

Perhaps we could invite Mark Van Ness and Workwell to comment, as they have been cited in AfME's statement? It seems reasonable they be made aware of AfME 's statement and given a chance to support, clarify or distance themselves.

And, that in itself, should be raising red flags all over the place. It seems to have become a political entity, where it's best to keep your mouth shut to keep in with them, rather than an council dedicated to good, rigorous research carried out in the interests of public health.

Is that tied to, used by, or influenced by? If they are being influenced by BACME, then that is a serious concern. The implication of a patient charity being used, or allowing themselves to be used as a fake shop front. I have tried to give them the benefit of the doubt and assumed they...

In my view this is simply repositioning themselves, now that so many people, even outside of the ME world, now know PACE was a truly terrible trial, from concept to design to handling the data. They will continue to try to play both sides, but they need to put a little distance between...

I would like to think so, but experience has made me suspicious. Depends on who is on the CSDR Independent Review Panel and how they interpret the word "Independent" .

Should someone tweet Sharpe to ask him if he has read the book? :laugh:

Another thing that strikes me from some of the links posted is that some people voluntarily have more ECT, as a maintenance dose. Now, I'm sure that even if they were incapable of making the decisions for themselves the first time around, they presumably are giving conscious and informed...

This is not aimed at you specifically @Inara. I'm using the word you in a general sense here. Of course one of the problems in deciding things like this in advance is that: 1) by the time you needed it (if you ever did) that the process might have been further refined and honed to give...

And the phrase done up like a kipper (to refer to BPS control.of the narrative) springs to mind.... https://www.urbandictionary.com/define.php?term=Done%20Up%20Like%20a%20Kipper

I think, partly from what JE wrote further up the thread, the question would be why? If one believed the problem lay in the brain that might be a start, but I don't think (m)any of us believe that. Also it sounds as if there are very tight criteria for trying ECT, so I doubt they'd just give...

When one looks at the loose entry criteria for PACE and you look at the figures (the real ones, not the hyped), I think PACE demonstrated CBT & GET don't work very well for anyone.

Confession time - a relative of mine worked in a fairly notorious (locally anyway) psychiatric hospital in England in the 50s and 60s. They routinely dealt with high security patients, patients in padded rooms etc.. ETC was not part of their daily routine, but, on occasion, they were required...

Nope. Maybe comments are moderated and they aren't around at the weekend?

I know this is a review of data gathered through questionnaires, but I don't see how they don't see that the flippin' questionnaires are part of the problem, in my opinion. The questionnaires do not necessarily capture the information that they are designed to elicit and, even if they do...

I have had a number of epsiodes of hair loss over the years due to a number of reasons: 1) thyroid - snag is if you get checked and it seems "normal" that just means that it's within a normal range. It does not mean that was the level that was normal for you. In addition thyroid problems can...

Interesting about your body temp normalizing @Inara. I am at my best thyroid-wise with a below normal TSH and T4 at the very top of the range as long as T3 stays mid range. I don't believe I have any problems converting T4/T3 and taking T3 isn't right for me, though I know others need it. My...

No they're not all bad @Trish. However, they get the jobs because of the status their accreditation brings, but that accreditation comes with responsibility. So, to my mind, if they then lie, or misrepresent the claimant, and the claimant is sanctioned, moved to a lesser benefit or had the...

I find it shocking that people with a genuine interest in healthcare and who have the smallest grain of interest in the well being of their fellow mankind prostitute their professional certification this way. Doctors, nurses and the like who are found to abuse or bring their profession into...