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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...

Not a good advertisement for rehab. They should have been able to work out whether the ones who had rehab were improved or worse after rehab, and whether their status before rehab was worse than those who didn't undergo rehab. In other words, surely it's not good enought to just dismiss this...

Thank you Joan.

The discussion is fine, much like here.

Some of us in our 70's have fitbits and smartphones too. Though I confess I probably wouldn't if I didn't have my daughter in her 40's living with me who does all the tedious stuff of buying them for herself, learning how to use them, and then helping me with mine. I think it's not a matter of...

For the record, here's what it says on the website: https://www.gold.ac.uk/careers/work-placements-and-internships/goldsmiths-internships/grip/ ______________ GRIP: Research internships Develop your research skills and your CV over the summer. GRIP is a programme that gives undergraduates six...

I expect Paul Garner will be delighted.

Oh dear. This is dreadful. It would indeed be interesting to know who is behind it. Given some people like Parker and Landmark seek to legitamise their quackery with academic qualifications and laughably poor quality research, I'm guessing it could be Agle herself or someone whose treatment she...