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That narrative is horrendous.

Thanks for your thoughtful response, @audrey_ryback. I hope your reply will open up possiblities for others to consider applying. I am already overcommitted with forum related stuff, so probably should step away from this one.

@bobbler, if you want to make a short submission adding your support to the MEAction response, I think you could do so by responding on the easy read version which is still open until 30th October.

I haven't managed to read it all, but what I've read is really excellent. Many thanks to MEAction UK.

True, but I vaguely remember Wessely was involved in the government's scientific Covid advisory group, I think.

That sounds eerily familiar. The great advisor Simon Wessely's influence no doubt. Though BJ is quite capable of making idiotic assumptions without 'help'.

Why can't they have the grace to say, the patients were right and I was wrong. There is no psychological predisposing or perpetuating factor in Long Covid. There's quite a tone of patient blaming in that first half of the abstract. And again in the second part, it's all the patients' fault for...

Excellent. I hope JNNP publish it.

Hi Audrey, thanks for joining us. I hope you can find some people with ME/CFS to join your PPI group. In theory I might have been interested, but I'm not well enough to do Zoom meetings, so would be no use to you. A question - do the PPI members have to be UK based?

How odd. It worked for me when I posted the link, and now it doesn't.

Some posts have been moved to: Covid vaccination - bad reactions, vaccine injury, and access to paxlovid.

:broken_heart::broken_heart::broken_heart: Today is the 4th anniversary of the publication of the flawed 2019 review 'Exercise therapy for CFS' by Larun et al. It is also the 4th anniversary of Dr Karla Soares-Weiser admitting the review is not fit for purpose and promising a new review to be...

My response on Twitter. Copy of tweet: Expect me to be blocked shortly. I'm already blocked by the main remission biome account. Edit: I have since left Twitter.

Someone further down in the converation on nitter net says the article is still there and gives a link: https://thespinoff.co.nz/society/30-09-2023/getting-the-brain-back-on-track-is-there-new-hope-for-sufferers-of-chronic-illness

What is nitter.net?

@Samuel, I understand your point that this is not a suitable questionnaire for people whose ME/CFS is very or extremely severe for distinguising whether someone at that level of severity is deteriorating, since the answers are likely to be that someone in that position can't do anything on the...

We already have a thread in the organisations subforum for COFFI: COFFI - The international collaborative on fatigue following infection

Thank you @Simone. I haven't found the energy/time to listen to it all yet. I did skip forward to the end to hear the PEM section and was very moved by it too. I agree, that's a really important illustration of the hidden side of ME/CFS.

Everyone who signed that letter, and Wessely himself of course, should be ashamed of themselves, and should be barred from having anything to do with ME/CFS for ever. Sadly, they are mostly still in post over a decade later.

Chronic Fatigue Syndrome/ME ME/CFS is a debilitating condition affecting some 1 per cent 0.4% of the UK population (“ME: bitterest row yet in a long saga”, 25 November). We believe this serious illness needs improved treatments and care, and that research is central to making this happen...