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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...

I think what they are trying to do is advertise their business and make pots of money by selling tests.

Tou may need to shorten the question to fit it into the poll. Maybe something like Which option best describes your sleep at the beginning of a crash?

No. She reported they were preparing a draft to suggest to the editor. She probably wasn't allowed to reveal what it said. Clearly the editor rejected their draft.

Your question says 'that night'. Do you mean the first night after the excess exertion and before or at the start of the crash? My sleep changes over the nights for as long as the crash lasts. I think I remember correctly that tired but wired often happens on that first night and is the first...

I think it's worth adding tired but wired as an option. It's not just about not being able to sleep it's mental and physical restlessness a bit like having too much caffeine. Also I think it would be worth asking if it happens specifically at the beginning if a crash.

Prof Shaw is a professor of chemistry. https://experts.exeter.ac.uk/1921-andrew-shaw

Thanks, we are aware, the links will be fixed.

When I was an MEA member and received the magazine I always thought most of it was page filler rubbish, and ads for dubious therapists. I soon only skimmed the medical updates from Charles Shepherd, then it went in the recycling. I could just as easily have read the medical stuff and odd bits of...

Moderator note Discussion of the latest developments resulting from Cochrane's decision to cancel the update and republish the old review as a new review has spread over several threads. Mods have decided to bring them together in a new thread. Some posts will be moved there from this thread...

Moderator note Discussion of the latest developments resulting from Cochrane's decision to cancel the update and republish the old review as a new review has spread over several threads. Mods have decided to bring them together in a new thread. Some posts have been moved there from this thread...

Moderator note Discussion of the latest developments resulting from Cochrane's decision to cancel the update and republish the old review as a new review has spread over several threads. Mods have decided to bring them together in a new thread. Some posts have been moved there from this thread...

I feel that we are becoming an increasingly isolated island of sanity in a world gone mad. We are under seige from all directions.