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I don't know. Maybe they decided that the abstract from 14 years ago didn't meed updating?

Thanks - I almost only use the PACE related pages, so forget that there's more there. I find it really useful as a store of links/sources, eg all of Tuller's blogs being listed thee.

I was just looking through he's recent replies - I think that this was my favourite: I wonder how he decides what to reply to.

Yes, that's the key thing. They're not going to be biased by claims that the therapist makes to the patient, or want to try to impress the researchers with a nice positive response.

re CFS & ME, I thought I'd post this from Swiss Re's write up of White's presentation of the PACE trial's results to them:

I'm sceptical about what this will mean for patients looking to challenge the BMA's approach, but who knows?

The same abstract was used for the 2004 version by a different author: https://www.sciencedirect.com/science/article/pii/B0124755704002882 This is the summary of changes they provided: https://www.sciencedirect.com/science/article/pii/B9780128012383957374

There are also political and financial matters to consider. Being diagnosed with 'ME' rather than 'CFS' can make it more difficult for insurance companies to avoid pay outs by applying MH exclusions.

It seems to me that no-one really knows, but that if a figure is needed for political reasons guestimating a prevalence rate of around 0.5% seems sensible, and there are studies that could be cited to support it. While there's still so much uncertainty over exactly who should be classed as...

PS: I feel a bit guilty for not doing more to try to follow up on this debate. It seems like a great opportunity to get pressure applied by those outside of the usual corrupt networks. I did get into a potentially promising exchange with my MP, but have then taken ages to send a new response.

Just saw this annoying response from an MP (I'm not sure where it was pasted from though):

It was reported on a PACE funding page that Arthritis UK were planning to fund a further follow-up to PACE, but Arthritis UK then stated that this was not true.

Congratulations!

Is it worth signing up and asking things? Any idea what? I don't see an easy way of getting the NIH to comment on the problems with PACE, and that's all I really know about. Any suggestions?

(Merged threads) Not listened to this yet, but saw it being praised on social media. Might only be available to UK listeners? [Although Mattie goes on to say "works just fine here. (Netherlands)"] From 1hr 16min: https://www.bbc.co.uk/programmes/p062zk4f#play

There is a danger that promoting awareness of possible gains can lead to an organised push-back. IMO it can be worth trying to keep things quiet until everything has been finalised.

These researchers also released a paper showing null results for actimeters with CBT for CRF, and I remember their justifications for that being pretty funny.

It's still a mistake for anyone to present that quote as if he was saying that those sick with CFS are undeserving.

Don't we want to keep good things away from him?! He's unlikely to make them better.

Welcome to the forum @daktaras and thanks for the link @TiredSam