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  1. Evergreen
    Post

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    Yes @JemPD I was looking at the SCOFF in that regard too. I'd answer it...carefully. As with all questionnaires, what matters is who interprets...
    Post by: Evergreen, Apr 26, 2024 at 3:05 PM in forum: General ME/CFS news
  2. Evergreen
    Post

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    No difference, just as dodgy. To me, Vitality 360 sounds like a professional version of the Optimum Health Clinic. Less dodgy in some ways – you...
    Post by: Evergreen, Apr 26, 2024 at 11:44 AM in forum: General ME/CFS news
  3. Evergreen
    Post

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    It is the "When to suspect an eating disorder" part - I had to truncate because the nutrition section is long and you can't quote more than 10% of...
    Post by: Evergreen, Apr 26, 2024 at 10:17 AM in forum: General ME/CFS news
  4. Evergreen
    Post

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    I agree with @JemPD and @Dolphin. I have such respect and gratitude for Dr Shepherd. Occasional quibbles about an MEA stance or action won't...
    Post by: Evergreen, Apr 25, 2024 at 4:04 PM in forum: General ME/CFS news
  5. Evergreen
    Post

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    Not a fan of this scattergun hit piece. Regarding the bit on Luscombe - a dietitian: Huh? A dietitian has absolutely nothing to do with whether...
    Post by: Evergreen, Apr 25, 2024 at 1:24 PM in forum: General ME/CFS news
  6. Evergreen
    Post

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

    I had the same impression, that there has been an uptick in the use of the term "rehabilitation" to refer to GET/CBT for ME/CFS, but it's always...
    Post by: Evergreen, Apr 22, 2024 at 11:02 AM in forum: ME/CFS research news
  7. Evergreen
    Post

    Wellness Recovery Action Plan, as recommended by BACME, UK

    You made me snort!
    Post by: Evergreen, Apr 18, 2024 in forum: Psychosomatic theories and treatments discussions
  8. Evergreen
    Post

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

    Just highlighting an edit to my post above, so that anyone who read my error will also see the correction: Edited to correct the lengths of easy...
    Post by: Evergreen, Apr 11, 2024 in forum: ME/CFS research
  9. Evergreen
    Post

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

    So they looked at fatigue according to trial number. But easy trials were 7 seconds long and hard trials were 21 seconds long, and we know that...
    Post by: Evergreen, Apr 11, 2024 in forum: ME/CFS research
  10. Evergreen
    Post

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

    What a clearly-written post. Assuming the analyses are appropriate (not something I can judge), I think you're right, this will be the heart of...
    Post by: Evergreen, Apr 1, 2024 in forum: ME/CFS research
  11. Evergreen
    Post

    NIH study - where to start?

    After about 7 pages of discussion of the EEfRT task, I tried to summarise what we as a group had figured out so far by pulling out key...
    Post by: Evergreen, Mar 28, 2024 in forum: ME/CFS research
  12. Evergreen
    Post

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    Oh that wasn't what I intended! What I was pondering was whether a study could be done that would control for diagnostic preferences, by not...
    Post by: Evergreen, Mar 27, 2024 in forum: Long Covid research
  13. Evergreen
    Post

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

    I don't know if anyone has sent anything to the authors. I have not. My understanding is that others on this thread are working on a...
    Post by: Evergreen, Mar 27, 2024 in forum: ME/CFS research
  14. Evergreen
    Post

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    Agree on both counts. I haven't seen a methodologically sound study that suggests a link between ME/CFS and either hypermobility or EDS,...
    Post by: Evergreen, Mar 22, 2024 in forum: Long Covid research
  15. Evergreen
    Post

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    In the teensy NIH study (Walitt et al. 2024), there was no difference in Beighton scores between pwME and healthy volunteers. It’s in...
    Post by: Evergreen, Mar 22, 2024 in forum: Long Covid research
  16. Evergreen
    Post

    Orthostatic intolerance occurring together with a hypoglycemia-like state

    I would interpret that as plain old orthostatic intolerance, with the hunger signal you're getting probably your body's way of saying, "Give me...
    Post by: Evergreen, Mar 18, 2024 in forum: General and other signs and symptoms
  17. Evergreen
    Post

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

    Couldn't agree more. And does it get more dismissive than "discomfort"? That discomfort could theoretically be immediate or delayed, but given...
    Post by: Evergreen, Mar 15, 2024 in forum: ME/CFS research
  18. Evergreen
    Post

    How Migraine & Chronic Fatigue Syndrome (ME/CFS) Are Connected: interview with James Baraniuk

    I googled the speaker of that talk, Katie MacDonald. She's a patient and advocate. She explains the FOMO bit here: I think for her that makes...
    Post by: Evergreen, Mar 14, 2024 in forum: ME/CFS research news
  19. Evergreen
    Post

    Trying unproven treatments - discussion thread

    I also always have the words of an excellent neurologist ringing in my ears. He was appalled that I had been put on an antidepressant despite not...
    Post by: Evergreen, Mar 14, 2024 in forum: Drug and supplement treatments
  20. Evergreen
    Post

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

    I agree that this is not expressed clearly in the paper. I think that when they say they are referring to what pwME intend to do when effort...
    Post by: Evergreen, Mar 14, 2024 in forum: ME/CFS research
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