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Fair point.

That discussion has been moved here: https://www.s4me.info/threads/usa-mount-sinai-pacs-clinic-and-dr-putrino.23051/page-3#post-487849

Posts about a Gez Medinger interview with Dr Jenna Tosto-Mancuso about Autonomic rehab. have been moved to: USA: Mount Sinai PACS clinic and Dr Putrino

Thread on the paper here. Preprint - Autonomic conditioning therapy reduces fatigue and improves global impression of change in individuals with post-acute COVID-19 syndrome, 2021 Putrino et al.

An excellent summary, Andy. I would just amend this: Perhaps: That a little more exertion ... Or something similar that makes it clear that for a pwME 'doing too much' is likely to be something a healthy person does daily and without even considering it 'exertion' or 'doing too much'.

See this thread: USA: The Long COVID Alliance (set up by SOLVE)

@Solstice that's so good to hear how the article has helped you.

I think Amitay has listened to the responses, and perhaps consulted more among SOLVE people, and realised he made a mistake with his support, and is backtracking. That's a good thing, though perhaps it would be better to say that's what he's done, rather than trying to reframe it as artistic...

I think it's a bit of honesty at last about what their real motives in supporting the campaign are. So they spoke at the launch in a patronising 'supporting artistic expresssion' way, not a sincere support of the stated aims of the campaign. So basically Amitay was bullshitting at the launch...

If that's the case, some FOI requests may turn out to be useful.

If this reanalysis is correct, it's a clear case for retraction of the original research.

I have watched the video. It's good in the sense that she talks about it being based on symptoms and perceived exertion, and taking account of PEM. And she starts slowly with lying down movement, not exercises, for 30 seconds, which is similar to what Workwell recommend. However she then goes...

I have received a brief and friendly email response to my contact via the website from Chesley. She says she has listening to people with the different diseases high on her agenda. I have reiterated my invitation to her to join us here and given her links to the forum and to this thread, with...

Copies of the Tweets in @Tom Kindlon's post: World ME Alliance @WorldMEAlliance In July a controversial article on #MyalgicE was published in a journal. Leaders from across the global ME community joined in writing a rapid response to this, yet it hasn't been published. Why not give the ME...

Thanks to those who wrote this response and to those who signed it, including, I see, 3 of the S4ME committee. Good to see us represented. It's disgraceful that the journal has chosen not to publish this and other responses.

I would think Janet Dafoe has far more pressing things to deal with than reading the details on a website of someone using a naming campaign to promote their film. Yes, Ron did an interview that is on the website, but I get the feeling he does his best to provide interviews with any ME...

I'm really pleased to hear that's being explored further.

Bad start illustrating with a hand glued to forehead while sitting at computer image. The rest is fine, it describes PEM accurately and pacing briefly. The main recommendation is having a 2 day CPET so clinicians are better informed about what to recommend for managing, and to help with...

I expect they will ignore any inconvenient differences in the type of CBT used in the different trials. Past experience with the out of date Cochrane reviews is they take everything at face value, and just crunch the numbers, despite them being meaningless.

Judging by the reaction on Twitter to Solve's CEO speaking at the launch meeting, I'd say Solve is unlikely to promote this campaign any further. I'm beginning to wonder whether the film maker is simply using the idea of a campaign to draw attention to her film that she's making, for publicity...