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IMO the only thing to be done at the SMC is to point out the appalling role they have played in promoting prejudice and misinformation. They are so bad that anything good they do is likely to cause net harm by allowing them to point to that as an indication of how 'balanced' they are.

I wonder who wrote that - who can be challenged? Whoever wrote and/or approved that submission clearly should not hold a position with any authority over patients.

Is there anyway of us seeing what data is available? eg: is the LTFU employment data included? I couldn't see how to find that out, but surely you must be able to find out what's available before starting to devise a proposal?

I thought this article was great. It's always frustrating that no single article could fully outline the problems with Crawley's work, or the BMJ's response to the concerns of CFS patients, but I thought this did a really good job of explaining things in a way that the general public could...

The radio show sounds like the standard spin - ignore the complicated problems with the problems with the research being criticised, and instead present a simplistic narrative or 'controversy' over 'psychological' approaches that relies on anecdotes. Probably done by people who think they'd...

Particularly interested in how these people are planning to increase patients' self-awareness - is that a new one?

It was the journal's fault for assuming they could trust Crawley & co's claim that their trial was prospectively registered. It wouldn't be fair to blame Crawley and her co-authors for that editorial failing.

I'm only just skimming this, but thought I'd say that Crawley isn't an author on the PACE trial and clarify that it was a Lancet commentary from Knoop and Bleijenberg that made the BS "strict criterion for recovery" claim. Under Horton the Lancet has failed to correct it, but the claim wasn't...

Hmmm... reference 12 is to the short Matthees piece pointing out the spin and misrepresentation seen in PACE's recover claims. The 'difficulty' there seemed to be that researchers were spinning their results. The other problems mentioned can be quite easily mitigated. A shame that they didn't...

It could be worth taking notice of if people like Helland and Strand are going to be shaping EUROMENE documents!

I'm still not expecting much of an improvement... which would be worse than nothing. This means I'm in no great rush. I think that they gave themselves too little time to get this right, with a committee that includes too many happy to get it wrong. If a delay means that the guidelines will be...

TBH, what I've seen from Johnson makes him seem like someone who is wrapped up in his own story and makes misleading claims that encourage people to be dismissive of patient concerns. That's one way of saying it!

@Dx Revision Watch links to this presentation from Schröder: It lists RecoveryNorway as one of four web resources at the end, and starts by thanking his colleagues and co-workers: Michael Sharpe, Emma Rehfeld, Per Fink, Torben Jørgensen and WinfriedRief.

That is a more positive perspective... I feel like I've seen enough of this stuff! PS: I feel like I've gone on about this little example in a way that could imply I think it's more important than it is, just because I've been replying to others. I didn't mean to make a big thing out of it.

You're already know what you're talking about though! There's nothing impressive about Schröder's writing, but I worry that it's more effective as propaganda targeting people who don't know the details when he, and people like him, have the 'psychsomatic vs biological' thing to hide behind.

Where have I held psychosomatic explanations to a lower standard? I've not seen any specific psychosomatic approach to CFS that could be presented as a legitimate way of treating CFS. Any specific claims that a vague, contradictory and not support by reliable evidence should be criticise...

I think it's almost inevitable that there are some thoughts and behaviour that can worsen most illnesses. Do you not think that there are any approaches to you illness that could make things worse for yourself? In the case of XMRV there was a claim that a specific test could identify XMRV at a...

I'm certainly not saying that we should not question unquestioned dogma, or that I feel uncomfortable doing so. I'm just pointing out that tying criticism of work like PACE to concerns about viewing CFS as a 'psychosomatic' illness (particularly when expressed in a simplified or imprecise...

I think it's a mistake to focus on the illness model, when it's almost always been presented as likely to be incomplete and work like PACE is presented as providing a 'pragmatic' approach to CFS. A lot of criticism of their use of various models seems to get things wrong too, partly because it's...

What specific claim about psychosomatic illness is their weakest spot? I'm not saying that we should let them dictate what we're allowed to discuss, but I do think that we've seen, time and again, "whenever disputes are able to be simplified in terms like 'psychosomatic or biological' it ends up...