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This is such a difficult one. When I was running a local support group I struggled to find a good way to discuss this with newbies. I think the best way was to show them that those of us with ME were still able to have a laugh and do things and enjoy life, then to point out that people who had...

Interesting. My wife took 3 weeks to recover from her first AZ jab.

Thanks @MEMarge ! It's getting hard to hit the right keys on my Amazon Fire, then autocorrect takes over!

One of my pet projects was to get both the NEC and the NIHR to be more transparent etc, but I'll say more when I'm back home and my eyes have been done. Please remind me.

I have vented my spleen and knocked out a reply to CDC, purely from a personal point of view. I need to go through it properly and check that it makes sense, but I thought I would attach it here so that you could see what I am thinking. Be reassured though, it isn't as long as their review.

Thanks. I understand your comments, @Trish , but two things bother me. The first is that if I had come to this fresh, knowing nothing of the controversy of PACE etc., I'd have been pretty shocked by the shoddy work, appalled by the Oxford criteria, and dug much deeper. Why haven't they? You...

I'm late into this and would like some advice please. I haven't been able yet to read through previous comments, and the content of the report is very long. But it bases its conclusions on the studies considered, and all we have to go is the references. Those references look heavily distorted...

I have just started to read the document, and after a few pages had a look at the references. There are a worrying number of studies with names of the usual suspects, but I couldn't see the re-analysis of PACE, I thought they had decided that use of the Oxford criteria led to trials that were...

Clear, concise and can't think of a clever word beginning with "c" to say that it was- paced just about perfectly. I'd certainly put it on my Facebook page if I could. Remind me at the end of July!

Just to pick up on the n=1 point – as a mathematician, finding a single counter-example destroys a hypothesis. Now of course that isn't appropriate in fuzzy real life, but n=1 accounts should at least challenge assumptions.

I'm almost afraid to agree with any of you. I never really understood why so many teachers were unhappy when students disagreed with them: year after year of teaching similar things made me yearn for some argument, some controversy.

I wonder whether, in focusing on the role of the brain in sleep, we have missed an important contribution that the muscles and other cells make to the need for sleep. If, as they speculate, that somehow part of the need for sleep is connected to energy supply and cell regeneration, could that be...

This is far from an ME study, but it introduces some interesting thoughts about sleep and where the need for sleep originates. It suggests that our focus on the brain is wrong. What that may suggest for our sleep patterns – who knows...

Thanks Simon! One aspect that also needs to be addressed though is the lack of transparency of both the MRC and NIHR when it comes to "planning" spending, and afterwards giving sufficient information about how money was spent. It is, as you say, takpayers' money, yet it is virtually impossible...

And I thought that running etc. was too high impact because we, who wear shoes, hit the ground with our heels, potentially causing a build-up of damage to the knee joint especially.

I knew there was some reason why I was built like a stick insect. As far as bone density is concerned, I always understood it to be micro-impacts that promoted it rather than muscle usage. As someone whose hips have been deemed to be (consistently) in the osteopenia range (1.4 sd below mean)...

Here's an n=1 comment though. As far as the HPA axis is concerned, while I was in hospital with various sepsis/liver abscess investigations going on, they decided to bump up my steroids from 10mg of prednisolone to 30mg. It was like coming out of a dark cellar into the warm summer sunshine...

I don't feel that NICE do have an agenda: it is more one of unscientific and illogical thinking. But to talk about 'weak evidence' after a certain, well-known celebrity hammered home the point in his expert testimony, does rather show a lack of joined-up thinking. What bothers me is that if...

When we talk of "the pain community", this will include us as far as much of the medical profession is concerned. I wonder whether "we" ought to take a look at the evidence base that NICE used (well, what pretends to be evidence) and see whether we can do something. Claire Swain, through...

Sadly, at school we used to teach a lot of "practical" maths, including the tricky art of interpreting statistical results, but the very traditional return to a tightly prescribed national curriculum cut this right back. It's true that at the time individual schools had too much freedom, and...