Thanks, so the chair says 'a number of comments in the chat saying they were finding wearables 'incredibly unreliable, not recordiing accurately...
That was Sarah Tyson as part of her talk commenting about how unreliable some individuals find wearables, presumably from a few people she's...
Moderator note Please confine comments about any named individual to their actions in their professional capacity. A reminder of Rule 2:
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...
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...
Not necessarily. Lots of retired people use their time in retirement to take up voluntary activities related to their profession.For example, Paul...
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...
If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS, even neck...
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...
I agree there's cause for concern. Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody knows...
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...
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...
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...
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...
Separate names with a comma.
