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Anything from the MEA on this? There should be someone official explaining to the producers how harmful this is.

Thanks for the replies. Your work on all this looks important. Are you planning to publish anything soon about your plans for a package of tracking and outcome measures for ME/CFS? This work looks really useful, especially as you will be testing it on patients along with biological testing.

You could also link them to this thread.

In situations like this, I think far better to provide links to people with expertise rather than risking getting facts wrong.

Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

There have been some newspaper articles about bad treatment in hospitals. Also suggest they contact Dr Charles Shepherd and Dr Nigel Speight at the MEA. See this thread: Maeve Boothby O'Neill - articles about her life, death and inquest David Tuller has written about Maeve and the wider...

@MelbME, are you planning to use any cognitive testing as part of your outcome assessments?

@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...