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Maat quoted this bit: I responded: It confused me. I've just checked and can see why. The quote was incomplete. It should have read: So it seems the going back to the drawing board and reconfiguring the project refers to the preceding sentences about pandemic and restructuring, not to the...

I've done the poll. I ticked tired but wired (among other things) but it's not before bed, it's when I try to settle down to sleep and keeps me awake for hours.

To clarify, I knew because Hilda put it in one of her published updates that there had been a complaint that wanted the new review process stopped and took a year for Cochrane to decide on, during which the IAG were told to stop work, but the author group were allowed to continue. But i thought...

I wonder whether there is more correspondence now about the republishing as a 2024 review, which presumably Larun had to agree to, as lead author.

I completely agree with that.

The team writing the Larun review are mostly based in Norway. I think we have discussed before whether they are subect to Norwegian FOI. I've forgotten the answer.

It's not just about the UK. The Australian new guideline process is happening and they have some Cochrane insiders fighting to retain GET, especially Paul Glasziou. No doubt other countries too.

You're right of course, but maybe you'd be surprised at how easy it is to make people feel pressured. Even just discussion of fundraising on a forum like this, where so many members are struggling just to get through each day and to have sufficient funds to eat and heat their homes, some people...

It's time Cochrane was shut down.

I don't think we can make assumptions about what anyone else can do. Lives are complicated. Some can, some can't, and none should be pressured into trying.

I missed that bit. I must read it again more carefully. I wish she'd name them. Well, they clearly succeeded in stopping the project in the end.

The trouble for me with showers is not so much the sitting under the warm water, it's all the undressing, hair washing, drying, dressing that exhausts me. I wouldn't even try to get in and out of a bath these days.

Yes, you're right, that is a big difference, though in the UK if you have savings you have to pay for that round the clock care, whichever illness you have. I knew someone with Parkinsons Disease and when they became too sick for their spouse to care for they had to go into a care home and pay...

Not if the rehabilitation industry keeps it's stranglehold on LC and ME/CFS.

I don't think we can generalise. People in the later stages of PD and MS can need 24 hour care, and people with mild ME/CFS are likely to manage with only help without extra care. I am very wary of comparisons in disability levels between conditions.

Thanks Hutan, that's excellent. I wish letters or articles like that could be publicised widely. I don't mean the bit about me, I mean the whole sham and shambles that is Cochrane and the harm they are doing propping up unscientific, even fraudulent, trials.

'The metasynthesis findings align with previous research'. Of course they do, they are based on previous research. What am I missing here?

One thing that's glaringly obvious but neither Cochrane nor Hilda are wiliing to say is that there is clearly behind the scenes influence going on at Cochrane to preserve a review recommending exercise therapy for ME/CFS at all costs. I hope there's a whistleblower somewhere lurking in the...

Dream on. It's never going to happen unless a billionaire with good scientific sense gets ME/CFS.

The medical system everywhere seems to be set up with doctors doing the diagnosing and prescribing treatments when there are known and established pathways through drugs or surgery. For everything else, it's a kneejerk reaction, send them to rehab and/or psychotherapy. It gets us off their...