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Well that was useful (not) I tried to open one of the documents and got an access denied response.

By email from the workshop organiser Monica Bolton: Dear attendee, Many thanks for attending the Clinical Trial Design in People with ME/CFS workshop and we hope that you found it informative. We said at the workshop that we would make as much of it available as possible. The link for...

Indeed, not just poles apart, planets apart. I'm not sure what planet Garner is on.

I've been reading Jeanette Burmeister's analysis, not having managed to find the time to do any analysis myself. Huge thanks to Jeanette for all her hard work. It's absolutely shocking just how badly the NIH team misrepresented practically every aspect of the EEfRT task results. No wonder the...

Not necessarily. Lots of retired people use their time in retirement to take up voluntary activities related to their profession.For example, Paul Garner, at one end of the spectrum, and Jonathan Edwards at the other.

I am not sure what it's rignt to say about this. It seems to me it's very likely that an early retirement may be on personal grounds about which we should not speculate. In a way I would rather Professor Crawley had stayed in her post after the Magenta trial results became clear, and used the...

If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS, even neck diagnoses like CCI/AAI etc are credible co-diagnoses/causes of ME/CFS, then I would accept that patients bear some responsiblity. So far you are the...

It seems pointless to do such detailed cognitive testing but to rely on self reports for sleep quality.

This sort of ignorance is one reason why I don't like ME/CFS being described as a disability. Better, I think, to describe it as a disabling illness. We are not primarily disabled. We are sick.

I agree there's cause for concern. Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody knows what to do other than pacing and avoiding reinfection. Specifically anticoagulants, which may be dangerous, and rehabilitation which tends to imply...

Thanks Joan. Very good reply.

How bizarre. Can you make any more of what the email said public?

The diagnostic criteria require post exertional malaise, not post exertional fatigue. Malaise means feeling ill, not feeling fatigued. I think the requirement for malaise is important, as it says that, at least when in PEM, and for most people all the time, people with ME/CFS have symptoms of...

Coming into this discussion late, I may be saying something already said. If a charity is fundraising for research into a disease, they want to attract funding in as non controversial and inclusive way as possible from everyone interested in helping with that disease. Many in the UK...

I certainly agree that if a clinic does anything useful that affects the person's health in a positive way, it is educating them about PEM, and I mean specifically the delayed significant increase in symptoms and reduction in function that lasts more than a day, not 'symptoms after exertion'...

Discussion on this thread: https://www.s4me.info/threads/concerns-about-the-me-associations-prevalence-figures-for-me-long-covid.38250/#post-528502

I don't think recording the dates and severity of episodes of PEM would count as a PROM of the sort we are used to where questionnaires are filled in at single time points based on recall over the last month or whatever time period specified. Does a daily diary/app record of activity, symptoms...

Getting back to the topic of this thread, has anyone had their two weeks later invitation to fill in the activities questionnaire again? I haven't and I'm sure it's more than 2 weeks.

Oops, thanks, I'll add the link.

Substack article by Christine Pagel Link to Substack post Guest post: A terrible academic paper has fueled renewed anti-vax journalism - it must be retracted A debunk and a plea for retraction from actuary Stuart McDonald _____________________________ The BMJ article criticised here is...