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The clinical leadership group is mostly therapists - OT, physio, psych., a couple of GP's and doctors representing the Rehabilitation organisation and NHS England.

https://www.clinicalpcs.org.uk/ The Clinical Post COVID Society is a joint initiative between NHS England and British Society of Physical and Rehabilitation Medicine (BSPRM) The Society has been formed as a working group of the BSPRM, funded for the first 12 months by NHS England, to continue...

No need to apologise. Your post is fine. It was just my brain that made a silly switch.

My brain did a noun verb switch. Of course you mean they are raining blows on us, not blowing rain on us.

Moderator note Brian Walitt's central role in the current and future of ME/CFS and Long Covid research at NIH is a major area of concern that goes far beyond this study. Mods have therefore copied and moved some posts to a new thread to enable more discussion and analysis of this situation...

Thank you Arvo for digging further into Walitt's past influence and current and future central role in ME/CFS research at NIH. I find it deeply disturbing. I hope US ME and Long Covid organisations will take action to get him and his influence removed.

I don't want to divert this thread, but I wonder whether this study has any relevance here: People with Long Covid and ME/CFS Exhibit Similarly Impaired Dexterity and Bimanual Coordination: A Case-Case-Control Study, 2024, Sanal-Hayes

You'd think if they were intending to use this test on pwME, their first step would be to validate it with a much bigger sample of patients and controls. They could have commissioned such a study on a separate cohort sometime in all the years this project has taken well before writing up this...

If it takes that many words to explain, it suggests to me they don't really know what they mean. Have either Nath or Walitt actually produced a succinct definition of effort preference?

patronising twaddle.

I'm finding it hard to visualise what the participants were doing in this test. Are they sitting upright at a computer and repeatedly tapping a specific key on the keyboard with their littie finger. If so, are they seated in an ergonomically supported way with the arm supported at a...

I don't think I would find finger pulse oximeter oxygen readings helpful for pacing. My readings taken at random vary between 95 and 99, usually 97 or 98. When it's at the lower end, a few deep breaths quickly bring it up to the top end, and similarly breathing shallowly or holding my breath for...

I recommend it. Postal voting has worked very well for me and my daughter for years. A reminder also that if you are votiing in person you will need photo ID. For postal voting, you don't need photo ID, you have to sign a separate sheet that you send in in a separate envelope from your vote...

That seems like a very good response rate. Well done DecodeME team!

My attempt early on to do the HRV measurement on my phone on waking failed as I couldn't manage it consistently, and the scores Visible gave me made no sense. I have been wondering about signing up and paying, partly because I think my fitbit is on its last legs, with the battery flattening...

Part of the process of developing these questionnaires is a retest 2 weeks after the first time you submit it. I have just received mine. I haven't decided yet whether to participate. For the record, here's the email that introduces the retest:

I haven't been able to follow all this discussion, and don't want to add to the burden of too many posts to read, so I'll try to make this brief. Are participants told before the task that they are being assessed for their effort preference? Or for anhedonia, or something else? If not, what are...

Moderator note Some posts have been deleted. Please avoid speculation about the personal lives, health or motivation of participants in the study.

So both are forms of GET, just done differently. What a ridiculous study. The GET design looks like it's straight from the PACE GET manuals, with only the specific 'exercise' controlled, the rest of the day left to them to manage as they can. And as in PACE, the GET group had heart rate...

The phrase 'effort preference' seems to be the psychologised version of 'exertion intolerance'. The Wikipedia article on preferences in psychology, economics, risk preferences etc is interesting. I have only skimmed it...