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A question on duration and scope of the project and funding: The orginal announcement of the project by the MEA, dated May 2023, says this: https://meassociation.org.uk/2023/05/me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services/ That suggests...

In out latest letter to Cochrane about harms we also formally presented the petition, including the list of organisations supporting the requests and asking them to read the comments on the petition.

Thank you for summarising our concerns so clearly. I feel like I'm going round in circles with this, and it's not good for my health. As I said on another thread on another topic, the Cochrane Exercise review fiasco, I feel like I'm shouting into a void and not an echo of a whisper is coming...

By all means start or join other symptoms threads. There are lots of threads already, so you may find one that fits, or you can start another one if you don't find one. The symptoms forums are all listed here: Symptoms and signs discussions And the members only forum is here: Symptoms and Signs...

Yes.

For a while before the pandemic I employed carers from a care agency. The care agency did six monthly reviews of their clients needs with the client and wrote it up and gave me a copy. In my case it was very simple, as all they needed to know was the nature of the tasks I would ask them to do...

I had a similar reaction, but I think the app and database was already set up for the nutritional stuff and when Covid came along they adapted it to use collect covid data.

There is a lot of emphasis in the above article and FAQ's on the project being patient led. That is, of course, a good thing if experienced patients who are accustomed to reviewing questionnaires related to ME/CFS are involved and listened to. My impression, and it's only an impression since I'm...

There is what seems to be a new article about this research project on the MEA website which was linked from today's email newsletter. I'm copying it here for ease of quoting and discussion: RESEARCH: CLINICAL ASSESSMENT TOOLKIT The ME Association is funding a study led by Prof Sarah Tyson of...

There is such a massive difference between doing something every day with minor adjustments and little detriment, and doing the same thing once on an average day, but crashing afterwards, and all variations in between, that this becomes meaningless. Example: I might spend time chatting with...

Thanks, I've spotted some more. I might get around to correcting them. :)

I think observing usual typing activity would be problematic, as different tasks require more thought, so would happen more slowly even when relatively less fatigued, and would be much more complex to track. A short typing task about the length of this post, with a document to copy would be OK...

I think the report and any discussion of it can go on this thread.

I notice I'm cognitively fatiguing when my typing error rate rockets up. If it's really bad, and I want to type something, I switch from touch typing on my laptop where I can't see the keys, so I'm typing from memory of key positions, to typing one fingered on my smartphone where I am looking at...

@forestglip has started a thread about using photos of the face to track changes. Go to that thread if you want to discuss it: Idea for machine learning model to track fatigue accurately Also from that thread, Peter Trewhitt has suggested tracking how long a string of numbers you can recall, eg...

This arose on another thread and I thought worth starting a new thread: Are there changes we notice to cognitive function that indicate we are cognitively fatiguing and may be crashing or crashed? Can we develop ways of tracking them easily to help with pacing? This thread is for sharing...

Fascinating idea, good luck with working it out, @forestglip. @Peter Trewhitt I like your idea of digit span as another indicator of PEM. Maybe we need a separate thread on things we notice that are easily testable so as not to divert this thread. I'll do that. Edit: New thread here...

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 questions starts with this sentence under the heading: _______________ Over the last month, have you done this activity on an average day (rather...

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.