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That's a good question. But at the moment, we don't have physican-led clinics, and PwME are being offered all sorts of dangerous rubbish. So I wonder if it would be worth patients trying to specify at this point what care they'd want provided (for example, for sleep, pain, OI, etc.) on the basis...

Have there been attempts at patient-designed care? @Suffolkres has been trying to get suitable services for Suffolk and NE Essex but I think that has been more about the structure of care (e.g. getting a physician-led service, that kind of thing)? (Sorry if I've got this wrong, @Suffolkes - I'm...

I wonder if the fact that they're using ICD codes that don't really identify us cleanly means this wouldn't be useful anyway.

Good points! But could some central NHS organisation pull the info from surgeries' databases and do that? Or are the surgeries' data siloed off? I haven't followed all the data-sharing, Palantir stuff.

BTW, even if they refuse a meeting, the line, 'Cochrane have refused to meet with us' would be very telling.

Nor can I. I wonder if it's particularly easy for them to distance themselves from us and our concerns because our contact has been at a distance. We're not people - we're just a bunch of electrons on a screen, sending (deservedly enormous) screeds of information at them. We look like a giant...

I was surprised (having given it zero thought) that DecodeME couldn't recruit via GP surgeries doing a 10-second computer search of their patients' records and finding the ones coded for ME/CFS. Do GPs ever recruit for research studies by doing such searches and reaching out to patients? I'd...

It's still not me! I don't have a project-wide team! :) It's the committee that has set up the framework and will initiate and organise future factsheets. I just happen to have done initial bottom-kicking as you say and am involved in the first one. But because the process is being developed...

I wish I could claim them as such but they're really the forum's factsheets. I'm just the person banging on about them all the time. But the more background digging I do, the more horrified I become at the rubbish that's out there. There really is a need for proper science-based stuff. Having it...

It doesn't exist yet, but @Kitty suggested it and the idea went down well on the thread.

This is one of the things we should be putting in the suggested factsheet for patients who are considering being in a trial.

Thank you for your service. :( Noooooooooo! :arghh:

Yes, such as, 'Don't use subjective measures as primary outcomes in open-label trials'. That could have saved us a whole lot of trouble. :whistle: Maybe not, but if there's a review coming up, it's a chance to try. Only to an extent, surely? Can't you think of maybe ten rules that, if...

That's a good thought. 'Clinical trial breaches national research standards' is a much bigger news story that something about Cochrane, who only one in ten thousand people will have heard of. Solid guidelines should also make it much easier to influence ethics committees at the stage where bad...

That's amazing, @Caroline Struthers! I hope you get your funding. If you don't, and you haven't already, maybe you could apply to one of the ME charities. This would be an excellent use of some of the £3m that the MEA are sitting on.

Yes, I think that's an excellent idea.

Thanks for that summary, @Jonathan Edwards. What a terrible waste of a great concept. Cochrane could have been such a force for good.

But Cochrane has a long history of doing reviews in non-behavioural areas - all sorts of drugs and surgery for all sorts of conditions, and I'd have thought that those reviews would outnumber the behavioural stuff by a long shot. I'm confused about how and why a bunch of BPSers would have...

Thanks - apparently that was the third time I downloaded it! I saw no sign of a document on the page itself. Maybe that was my adblocker in action. It's a very bad document. To be of any use it needs to be a tenth of its current length and without all the made-up stuff.

I just followed @Nightsong's link to the 'This is M.E.' page but found it completely blank: https://www.actionforme.org.uk/get-information/care-and-support/social-care-support/