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@sarahtyson, in the hope that you are continuing to read and take notice of comments on this thread, I would like to draw the attention of your team to this discussion of a team in Australia working on clinical trials and at the same time developing what looks to me like a very good set of tools...

I'm liking very much your development of ways to track changes and potential for use as outcome measures. I like the mix of the three aspects, FUNCAP, wearable activity tracker and personalised symptom tracking. Is your app for symptom tracking available for others to use? On FUNCAP, I don't...

That is extremely concerning. I can't imagine the MEA, AfME or MEAction being so stupid. Even if they can find a member with ME/CFS who can run, the message it sends to the audience is so harmful. I hope someone has contacted these ME organisations and asked them to contact the organisers and...

Thanks, so the chair says 'a number of comments in the chat saying they were finding wearables 'incredibly unreliable, not recordiing accurately what they were doing, things like that.' So not lots of people, just 'a number of people' and the chair's quick glance through a few people responding...

That was Sarah Tyson as part of her talk commenting about how unreliable some individuals find wearables, presumably from a few people she's spoken to. I don't recall the audience making any such comments. Can you point to it?

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 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...