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https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/

I have 2 problems with this research. First, why wasn't it done decades ago? Anyone with half a brain could just read the 11 statements and see they were useless for 'measuring' severity of fatigue in ME/CFS, for all the reasons found in this research, yet UK clinics and researchers all over...

I think a combination of upright time as measured here, time lying down and steps could be very useful. I like this version of upright time with an ankle worn device because I think there is a specific problem with sitting feet on floor being much more problematic than sitting with legs...

From an email: ME/CFS Research Update: an overview of the current research in Germany and Austria Hamburg, 10 April 2024 The new ME/CFS Research Update offers patients, relatives and interested parties an overview of the current research landscape based on data from the ME/CFS Research...

I think it is a good idea to expand the severity scale to include more detail at each severity level. I always seem to fall between levels, whatever scale is used. I had a quick attempt to fill this in. I couldn't make sense of how it worked, and how one retrieves saved data for comparison over...

I don't think that's right. I think it is intended to be a whole suite of new resources as a toolkit for clinical care, providing information on which the clinician can base that care. The service evaluation aim is just a part of the package.

I think the latest reply from Cochrane is little more than an acknowledgement of receipt of our letter, sent simply because their standard automated response to all emails includes a promise of a reply within 3 weeks, so they had to send something now the 3 weeks are up. Basically it says there...

Sigh, so the project rolls merrily on. I hope the PASS questionnaire will be radically revised.

I assume an individualised structured titrated return to activity program is a version of GET.

I think the "deliberate" versus "fuckup" question does have relevance because it has implications for the future. The appointment of Walitt to a position of power over ME/CFS, Long Covid and GWI and anything else he manages to drag in to his Interoceptive department at NIH may have been a...

See also this members only thread

Whichever it was, all the other listed authors of the paper went along with it. I can't help wondering why.

@dave30th, I'm not assuming your comment was addressed to me specifically. Rather I assume it's a response to several posts. I've just reminded myself of my post and put it next to yours because I wanted to remind myself that I caveated my post with 'It feels like...' twice. I make no...

I think this sort of stuff is a lot about therapists wanting to keep their distance from individuals' and their personal difficulties because they know there's little or nothing they can do to help. So they fill up their own and the patients' time with generic stuff delivered in groups, so they...

I wonder whether Peter Gladwell and his colleagues, including the OT's who run my local clinic that claimed to do pacing before the 2007 guideline, but who actually did a pacing-up version, are even aware that their approach has been causing harm.

Unless you have a clear idea of the new service model being proposed, how can you design proms or other tools to assist clinicans and patients, and to test whether the energy management tools/techniques and support services are beneficial to pwME of all severities? I would love to see the...

I'm so sorry this happened to you. It's shocking but sadly not surprising. Gladwell should not be involved in developing new services if he's still pushing his pacing-up version of pacing. I looked back at PACE recently and was horrified to see they described the GET and CBT branches of the...

Thank you @bobbler for looking more at Gladwell's publications. I think on this thread we have tended to focus more on Tyson's involvement, but Gladwell is the one on the team with long experience of running an ME clinic, working with AfME in producing some of their materials, and research...

:) Yahat fordn'ny dusrpsie me. And hour uneditend post looks very much lopke mine do before editi:banghead:ing. Me too.

I think people with a rehab background who understand that rehab that involves increasing activity is not the answer for ME/CFS can do useful research on the effects of activity on our physiology, etc. We need people from multiple backgrounds to look from lots of different angles.