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  1. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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...
  2. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

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

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    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...
  4. Trish

    UK: Contaminated Blood scandal

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

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion 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...
  6. Trish

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    @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...
  7. Trish

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    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...
  8. Trish

    Idea for machine learning model to track fatigue accurately

    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...
  9. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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...
  10. Trish

    The “Permanent Worsening” Phenomenon

    The NICE guideline recognises it: See the glossary: https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise
  11. Trish

    Blue Sunday: The Tea Party for M.E. 2024

    Well done Tom's super mum. Thanks Tom for sharing a happy event.
  12. Trish

    READ FIRST: Welcome to the MEpedia subforum!

    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 or whatever means the MEPedia editorial managers use to communicate with editors.
  13. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Given that this project is supposed to be providing resources for implementing the NICE guideline, surely they should be using terms as defined by NICE in the guideline: https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise NICE also defines these related...
  14. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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 will try to remove repetitions, consider any comments anyone makes on this thread, and add a section on the latest questionnaire when more of our...
  15. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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 saying forum posts are being read, and he agrees with some of our points and disagrees with others, but reiterating full support for the team and...
  16. Trish

    What is the Todd Davenport approach to pacing?

    This reminds me of a parallel situation with household energy. I recently had gas and electricity smart meters fitted. This included providing a small plug in device showing constantly updated cost of energy used so far for each day. I found myself obsessing about looking at it in an unhealthy...
  17. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I think one more to come that is intended for service evaluation.
  18. Trish

    What is the Todd Davenport approach to pacing?

    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 pacing, for example, it gives me objective permission to stop and rest part way through a task when I might be tempted to push on. I don't have a signal...
  19. Trish

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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 opportunity for misinterpretation of the data from this questionnaire. I think it would help this discussion if Sarah Tyson or Peter Gladwell were to join...
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