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My valentine's gift from Cochrane:

Thanks. So it looks like we discussed it in 2020 before the NICE guideline, and haven't discussed the 2022 update.

I'm not sure a factsheet would be the right way to convey that message. Maybe an article from someone with experience describing how patients can be useful as patient reps, and the pitfalls and need to be well informed. I think it's largely about whether the group, be it BACME or Cochrane, is...

I think all we need to tell patient reps and those appointing them is to join the forum. Once we have a set of factsheets and articles that should be a good resource to point researchers and patient reps towards.

Thanks, @InitialConditions. Definitely worth sharing again. Have you submitted it to BACME?

With great difficulty, especially as they have patient reps on the author group, so can say they have listened to patients. And it pretends to be NICE compliant.

I had forgotten just how bad this is. They have a whole artcle on their dysreguation model which as far as I can see tells us nothing. It's basically here are some physiological systems, each with a pretty diagram, and a list of symptoms that arise from dysreguation of that system. I find it...

BACME Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) October 2020, updated 2022 https://bacme.info/wp-content/uploads/2022/05/BACME-Position-Paper-on-the-Management-of-ME-CFS-October-2020.pdf We have probably discussed this before. I want to...

Is it normal for people with physical illnesses to have all this prying into their psychology, past and present, their social situation, and their behaviour?

Ah yes, the old familiar 'my quack training is better than their quack training'. Twas ever thus.

I think we've been told that's not happening. Might be wrong.

The major reorganisation Cochrane included in their many excuses for the delays in the process to produce the new review was caused by the UK NIHR ceasing funding Cochrane.

Not any more, I understand.

I can't think of any reply you would get other than that Cochrane is an independent charity and any complaints should be addressed to Cochrane, their funders or the Charity Commission. I can't think of anything an MP could do with a parliamentary question, but I'm no expert.

Is it just me? (I'm crashed, so it probably is). I'm struggling to follow which 'they' people are referring to.

That is so not what ME/CFS is.

That's a well argued response, making the Garner critique look stupid.

And of course the make the most of citing the Walitt 'effort preference' term 9. Walitt, B. et al. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nat. Commun. 15, 907 (2024). And they reference the Cochrane review, though strangely citing the 2017...

Thanks all who have contributed so far. I'm keen to hear more about all aspects of your OI, not why it's happening in terms of physiology or comparing ourselves with others so much as your own experience. I agree, EndME that the temporal aspects are an important part of the picture for each...

Sadly the authors of it sold it in their blurb as a key part of producing a toolkit for clinics for implementing NICE. I just hope the MEA have seen sense and called a halt to funding.