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  1. Keela Too
    Post

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

    It’s the failure to address the blindingly obvious, that allows them to collect data that “supports” their favoured approaches.
    Post by: Keela Too, Apr 25, 2024 at 11:32 AM in forum: ME/CFS research news
  2. Keela Too
    Post

    What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?

    Psychwashing however is much more catchy, and delivers the clear implication that everything is now being washed in their psych approach....
    Post by: Keela Too, Apr 21, 2024 at 9:23 AM in forum: General Advocacy Discussions
  3. Keela Too
    Post

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

    The reply is worrying. How can they still have faith in Sarah Tyson after what she said here? It makes no sense.
    Post by: Keela Too, Apr 4, 2024 in forum: ME/CFS research news
  4. Keela Too
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Almost like they are trying to instil some sort of fear into the patient group? Would those cautions cause patients to (even sub consciously)...
    Post by: Keela Too, Mar 22, 2024 in forum: ME/CFS research
  5. Keela Too
    Post

    Self-help books for ME/CFS: are they all bad?

    Wow. I’d almost forgotten writing all that stuff. I stopped blogging when I was on the Guideline committee, and then got out of the way of it....
    Post by: Keela Too, Mar 7, 2024 in forum: General ME/CFS discussion
  6. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Thanks @Trish @rvallee & @NelliePledge I’ll maybe just stick with my Fitbit 4. It has HR & an overnight HRV. The free app is interesting and...
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  7. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Manually From my Fitbit. I have chosen step count ranges to equate to each number they give.
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  8. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Yes I noticed that was there. Will be interesting to see what it shows I also like the comparison feature. I added “steps” & have defined my own...
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  9. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Wow!!
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  10. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Thanks @yannlk I might just stick with my current methods. I’m probably not very good at obeying a device over my own instincts anyway!! I'm a...
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  11. Keela Too
    Post

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Do studies never have to define this?
    Post by: Keela Too, Mar 5, 2024 in forum: ME/CFS research
  12. Keela Too
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I’m curious how folk, who have been using this for a while, are finding it? Any updates? I’ve downloaded the free App for now. I’ve had ME 12...
    Post by: Keela Too, Mar 5, 2024 in forum: Monitoring and pacing
  13. Keela Too
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Actually yes! That is exactly what they should have done. So little supporting evidence for so called “effort preference” by what ever name!
    Post by: Keela Too, Mar 4, 2024 in forum: ME/CFS research
  14. Keela Too
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Their terms are so slippery. They suggest one thing to the world, whilst the term “supposedly” means another thing to experts. Personally, I...
    Post by: Keela Too, Mar 4, 2024 in forum: ME/CFS research
  15. Keela Too
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    It’s like the name Chronic Fatigue Syndrome all over again.
    Post by: Keela Too, Mar 3, 2024 in forum: ME/CFS research
  16. Keela Too
    Post

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Oh and of course ongoing PEM can escalate what might be an okay activity when rested, into an activity that induces both more rapid fatiguability...
    Post by: Keela Too, Mar 3, 2024 in forum: ME/CFS research
  17. Keela Too
    Post

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think I’m not unusual in having both fatiguability and PEM separated by time. I know some researchers like to roll both concepts into one. But...
    Post by: Keela Too, Mar 3, 2024 in forum: ME/CFS research
  18. Keela Too
    Post

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Maybe also ask for the instructions themselves at the same time.
    Post by: Keela Too, Mar 2, 2024 in forum: ME/CFS research
  19. Keela Too
    Post

    CDC Multi-site Study: Heterogeneity in ME/CFS Illness Measures Not Explained by Clinical Practice, 2024, Unger et al

    It seems to me that it doesn’t necessarily tell us much about the patients, but that rather the clinicians admitting patients are admitting...
    Post by: Keela Too, Feb 29, 2024 in forum: ME/CFS research
  20. Keela Too
    Post

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    Thank you!
    Post by: Keela Too, Feb 28, 2024 in forum: ME/CFS research
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