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We have sent another letter to people at Cochrane, this time addressed to the Chief Executive of Cochrane with copies to relevant people. Posted by the committee on the closed thread, and copied here in case anyone wants to discuss it.

Those descriptions of recovery sound very like my recovery from what was diagnosed as glandular fever which put me to bed for 6 months. I remember needing to crawl upstairs. I just recovered naturally and resumed normal activity and soon returned to normal fitness. No need for any therapy...

Doctors anonymously making derogatory comments about patients and doctors spreading misinformation about medical matters should be outed and dealt with by their bosses and professional organisations. Doctors who are posting on social media to discuss their own health and science, advocacy etc...

Index cases, I understand, usually means the first recorded cases of a new disease. In this case it seems to be they are claiming them the first recorded cases of sudden recovery from LC after this treatment. Does it say how many other people with LC were also treated with this drug intended...

Just as many of us are leaving Twitter!

That's excellent news, thanks to the Irish ME Assocation and to @Tom Kindlon for helping to publicise the petition.

I agree, I was just questioning whether they only treated 3 people. If not they should have said what happened to the rest of the people treated, not just picked the 3 that recovered. Unfortunately it's paywalled so I don't know what they did. If they treated and hundred people and 3 recovered...

I had it when it was offered. Age 60 or 65, I can't remember which. The nurse who did it said people tend to get side effects for a few days. All I remember is the usual sore arm. No bad or long term effects. Seems to me worth getting. Pneumonia is a serious illness and can kill.

That's not a treatment patients casually try on their own, it has to be prescribed and administered by clinicians. I assume those clinicians didn't choose to give this treatment randomly, and only to 3 patients. If so, why single out these 3 to write a paper about. Why not do a proper pilot...

They have used machine analysis of SF-36 scores across all the SF-36 fields, physical, social and emotional to divide pwME into two groups. What I can't see anywhere in the paper is any data on which factors contributed to being in each group. I'm not sure studies like this that use very...

Many thanks to #MEAction Scotland for supporting the letters and petition. This takes us up to 40 international, national and local organisations who have signed in support, listed here.

I don't think we can know that unless it's fully researched. What's the difference between someone getting LC and/or ME/CFS from a mild or even asymtomatic infection of SARS-Cov-2 and getting it after any of the viruses that cause cold symptoms@? Answer - nobody knows...

No, they don't appear on the document when I download it. Probably the fault of my computer as I don't have docx and it sometimes doesn't download docx at all. JE's submission: https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760 I take your point...

GET for OI is contraindicated in ME/CFS because GET is contraindated for ME/CFS. Why can't they understand that. I've not heard of CBT being described as brain retraining before, and the claim that it helps to improve attention, memory etc seems completely made up nonsense. And it would nice to...

That's a really good letter, @Hutan. Just a couple of points. LP practitioners have no clinical training and get around rules about who can claim to treat diseases by calling what they do 'training' rather than 'therapy'. I think a few links would be a good idea, specifically to the...

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.