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Thanks @strategist and @Arvo. You’ve confirmed the book title and how to spell Hurry’s name so I’ve edited the transcript text accordingly.

In some respects I’m looking forward to the full publication of this. I’m curious to see if they say anything new, which I doubt, and I’ll also look forward to the responses. As ever it’s nice to be reminded to donate. Edit removed

Transcript. If anyone spots mistakes, please let me know and I’ll alter it. In a few places I was unsure of what I could hear and for theses I put a (?) or two likely options. For ease of reading I also added some punctuation where it seemed obvious and divided into short sections, so these...

It looks interesting, being based around the documentation of one person’s ME experience, but I don’t have the cognitive energy to read it. From page 3 Chapter 2 briefly looks at the history, definitions and severity levels, , prevalence. The author makes a distinction between ME and CFS, and...

It sounds as though you don’t experience a similar problem with your legs in response to other activity/or with PEM? Could you have been tensing your legs without realising it, perhaps because it was an unfamiliar thing to be doing, or because you weren’t as comfortable as you could be? I don’t...

Me too, and I use a fitted sheet on the mattress underneath. I found it much easier.

Deleted previous post as a bad job. Basically I mean to say and I hope it makes sense - The MEA reference to social media posts and asking for emails could be because this is actually a serious business they have to to take seriously. I haven’t read anything other than this thread, but...

$15,543 24%

Watching bit by bit I’ve reached the end of KM’s talk (it finishes at about 1 hour 10 minutes). I haven’t watched the Q&A. I need to watch again to really take in what he is saying, but found it very interesting. I’m sorry that I don’t have the capability to provide coherent notes on something...

I think @Esther12’s points are worth thinking about, but don’t have the capacity to say where I might differ. I’ve been thinking about this thread. Truthfully I think quite a bit it is more counterproductive than helpful in terms of advocacy. It’s not an advocacy thread, and isn’t in the...

Thanks Midnattsol, I think I remember that now you mention it. Just as Sharpe isn’t really interested in engaging with anyone either when he posts on Twitter? I think Sharpe’s interested in communicating to the people who matter to him, not engaging with patients or the science. Nevertheless...

I was genuinely wondering about it, though the question is perhaps pointless because people here probably don’t know the answer to it. I guess I should have elaborated as to what I was thinking, sorry. I think I remember that Garner has a position as a specialist in reviewing evidence or...

Ah ok - my brains a bit fried now so I’m probably not so good at making sense of things.

@Invisible Woman I don’t think anything I’ve said in my two posts is a contradiction of what you have posted seemingly in reply to me - unless I’m misinterpreting your post? (eta - expressing myself badly - not contradiction, just whether it was a response aimed at me. )

This is a twisting of the idea of pacing. I don’t know if that’s the message any ‘leading figures’ gave or not, but these things are the verifiable lived experience of some patients with ME. He is denying the experience of people who have suffered and are still suffering a great deal. Has he...

If it is true that Garner received death threats, or something that he has in sincerity construed as a death threat, then that must be horrible for him and the best thing to do is go to the police. I don’t think it matters whether the person is a pwme or not. The ME patient group as a whole...

The group that is missing from this stakeholder list is the patients themselves.

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This is a better article than I expected, and pretty useful information for those who don’t know much at all about Long Covid or ME/CFS, or have erroneous preconceptions, despite its hand wavy mind/body mention and a bit of fudging around GET. He does say that those newly experiencing problems...

It’s no more bulky than the Garmin smart watch I wear 24/7. I had been envisaging a bulky ankle monitoring device.