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There’s a bit more detail in the abstract on Science, I don’t have full access though And on this article on the Stanford website, a few snippets

Rehabilitation is defined by most people (and dictionaries) as restoring someone to previous health or to normal life. More widely it’s about restoring a thing to its previous state or attempts to do so. It’s intrinsically linked to ideas of re-establishment or renewal. Extending the definition...

All this talk of safe spaces, reducing isolation, supporting one another with reflective practice. It reminds me of that meme… BACME members only do this when they’re in extreme distress

Excellent again, thanks @Jonathan Edwards I know (some of us) give you some grief on certain points at times but we’re incredibly lucky to have someone willing and able to give their time and expertise as you are.

Yes well put @Kitty They also often try to frame it as e powering patients. But it is a confusion of responsibility and accountability. A problem I’ve seen occurs in different organisations which fail and it’s incredibly frustrating for all involved. As a bit of an aside there’s an interesting...

Another great point and one of the problems with the reality of ‘some people recover’ being tied to a fallacy of effectiveness of an intervention. Rather than accepting we know as little about why some people recover as we do for why some people stay sick. Getting to the explanation there would...

Maybe we should all start saying our recovery goal is for the condition to be taken seriously, for the provision of appropriate care for severely affected people and investment in research to find treatments. And asking how they can help with those.

I think this is a really important point. many do really think they are helping so feel put out when told they’re not. They can’t see the harm that ‘trying to help’ does even if there is no evidence for their help. Perhaps if we use the example on severe people where there seems more acceptance...

Respond first and only bother with the detail and evidence in front of you later (if at all) does seem familiar for some reason…

We all live in hope of being positively surprised.

That group has a session on soothing rhythm breathing/restorative exercise in their conference for post infectious conditions next month. Which is all very nice but not exactly what we need here IMHO and that and the wider idea of rehabilitation seems to somewhat miss the point.

:laugh:

How many newspapers are about getting information across? Many have a pretty good history of getting their lifestyle and science sections muddled too.

I’ve only ever been diving in the South and Western Pacific, must be why I’ve got ME/CFS!

Some thoughts I had on possible recipients people could forward it to - local ME/CFS groups they’re members of - any contacts in local CCGs or what are they now, ICSs/ICBs? - your MP

I think we can all imagine!

There’s a document up about this now https://openresearch.nihr.ac.uk/documents/6-12 I haven’t read the whole thing but this from the closing ‘Next Steps’ seems a bold claim when SequenceME is sitting there ready to go without receiving funding

This is a good point. I’d like to see numbers on what percentage of people with ME/CFS are seen to have these other conditions. We’ve fought for a long time to have ME/CFS recognised as a single condition and anyone proposing we dismantle that needs to be providing very conclusive evidence to...

So is your belief that there is nonsuch thing as ME/CFS but rather a collection of different conditions with different pathways requiring different treatments? If so can you say what conclusive evidence you have for this? Surely it is important to challenge any hypothesis and it is upon those...

Yes thank you, very well articulated and great to see something like this coming from and representing three different fields and backgrounds with Jonathan, Michelle and Joan.