Fascinating idea, good luck with working it out, @forestglip. @Peter Trewhitt I like your idea of digit span as another indicator of PEM. Maybe...
Yes, sorry, I was too tired last night to say anything helpful. I'll copy them below without quote boxes so they can be multiquoted: Each set of...
The NICE guideline recognises it: See the glossary: https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise
Well done Tom's super mum. Thanks Tom for sharing a happy event.
I don't think Jaime Seltzer reads this forum now, so if you want to get a message to her about this you probably need to contact her via MEAction...
Given that this project is supposed to be providing resources for implementing the NICE guideline, surely they should be using terms as defined by...
Feel free, the draft letter is there for anyone to agree, disagree, make suggestions etc. If the committee does send another letter, I expect we...
As you know, the S4ME committee wrote to the MEA about our concerns about this project and received a short response from the chair of trustees...
This reminds me of a parallel situation with household energy. I recently had gas and electricity smart meters fitted. This included providing a...
I think one more to come that is intended for service evaluation.
That's very interesting, Ravi. I haven’t used HRV as my Fitbit only does HR and steps. I find HR useful as an adjunct to symptom contingent...
Yes, Bobbler, I agree with all of that.
I have no idea of the motivation of therapists who might use this questionnaire. I would hope they intend to be helpful. But there is huge...
I think it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires like this...
It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an...
I agree. There is a world of difference between being able to shower daily, though a bit more slowly than a healthy person, and using a shower...
@sarahtyson, if you are reading this, perhaps you would share that talk publicly so we can all see what your latest thinking is on the progress of...
In my case it was because I didn't know about it. Edit: Also it was the day after the Unite to Fight two day marathon conference, so I had no...
They seem to be aimed at replacing the questionnaires much beloved of therapists in the old CBT/GET clinics. That is the Chalder Fatigue...
I suspect the few in the research team design the questionnaire first, then ask for suggested amendments. I can't imagine a group of pwME of...
Separate names with a comma.
