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Very reassuring to see you’ve been responding on here during the quarter-final @Jonathan Edwards. (That’s the quarter-final of the football World Cup)

I would be so disappointed if you were not completely out of touch with popular culture. It would seriously undermine your credibility as an expert witness.

It might be safer to go for a non-descriptive name, like Ramsay’s Disease or perhaps some other proper name like Matthees – it would be a great to be able to honour Alem’s heroic acheivements in some way. Perhaps one day there will be award named after him. I hope so. If Jonathan doesn’t like...

I sense I’m in a minority here but I’m not at all attached to the ME label. It’s much better than CFS, and I’m happy for it to be used, but equally I am not at all confident that everybody who meets the diagnostic criteria for ME (whichever critera is used) has the same illness. Whilst the CFS...

Anoyone following this thread, please see the correction I have added to my original post. Apologies for the mistake.

Wasn’t sure where to post this as it’s not an ME/CFS study, so please move if necessary. (Moderator note: thread has been moved.) I’ve only read the abstract and skimmed the rest but this study looks so bad – an open label uncontrolled trial relying on self-reported subjective outcome measures...

Reminds me of one of my favourite songs: Once upon a time you dressed so fine You threw the bums a dime in your prime, didn't you? People'd call, say, "Beware doll, you're bound to fall" You thought they were all kiddin' you You used to laugh about Everybody that was hangin' out Now you don't...

Sorry to be pedantic again but I’m sure we all appreciate the importance of accuracy when quoting these people. What he said was “nobody really liked them.” He used the past tense, referring to his time at Queen Square when he became interested in ME/CFS. He might argue that he was referring to...

In retrospect I think it may have been a mistake for me to tweet the above. As others have said, probably better to ignore – although I hope there may be some value in engaging Godwin again. I’m guessing that @dave30th has probably filled him in on some of this stuff but I think it’s important...

Yes, instead of being fobbed off with bull***t therapies that blame patients for being unwell and make many feel worse, I would much rather be told: “Although you meet the diagnostic criteria for ME/CFS, we don’t yet understand the pathology of your condition, and there are no proven effective...

Agree. Adam, will you email Harrison? I wrote to Mark Edwards (the one who is apparently no longer on the CMRC board) to ask him which effective CFS treatments he was referring to in the abstract of A unified Medhanism for Functional Neurological Symptoms...

The strange thing is that I think it was me who first wrote “GOTCHA!” in this thread, and yet I appear to be one of the few people who have not been blocked (see: https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/page-79#post-83525). I would not ordinarily use...

Please can someone make sure the review is shared as widely as possible on Facebook?

@Carolyn Wilshire I know this forum is public but are you happy for the review and correspondence to be shared on social media and beyond?

I think the quote you’re thinking of is “The bastards don’t want to get better.” It was said by a supervisor in the FINE trial. You can find it on page 18 here: https://niceguidelines.files.wordpress.com/2011/12/the-bastards-don_t-want-to-get-better.pdf Full quote:

May God forgive me for my part in ruining the lives of some of these vulnerable psychiatrists but this claim is not supported by the data.

Thanks. I hadn’t actually noticed that, but I was wondering why it was suddenly getting so much attention. That was the point I was making in my Tweet. Hopefully, the Minister’s tactic will backfire and draw more attention to the failures of the DHSC et al. [Edited to add – it’s been a good...

I don’t disagree, but the problem is that this has been used as an excuse for not funding anything in the past. If the ring-fenced funds can be carried over and added to the next year’s funds, and the right people are making the decisions, standards do not necessarily need to be lowered...

I agree that just ring-fencing will not be enough. But I maintain that it is important, and may be a prerequisite. We certainly need the right sort of people at the MRC or NIHR making the decisions, which has not been the case to date. The MRC website currently states...

As past strategies have failed, I am in favour of ring-fencing. If there are insufficient high-quality proposals then funds can be carried over and added to the next year’s funds. But I believe that high-quality proposals will follow if the funding is there. As I told my MP about 15 years ago...