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  1. Blueskytoo
    Post

    Trial Report The presence of attentional and interpretation biases in patients with severe MS-related fatigue (also ME/CFS), 2024, Knoop, Moss-Morris et al

    If only these people would *finally* get as fucking sick of the sound of their own voices as we are….
    Post by: Blueskytoo, Mar 30, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  2. Blueskytoo
    Post

    Opinion: Treading Fine Lines by Harriet Carroll [on ME/CFS/LongCovid patient/researcher relationships]

    Don’t worry, it completely caught me out too :). Which, of course, was entirely the point...;)
    Post by: Blueskytoo, Mar 24, 2024 in forum: General ME/CFS news
  3. Blueskytoo
    Post

    Opinion: Treading Fine Lines by Harriet Carroll [on ME/CFS/LongCovid patient/researcher relationships]

    Make sure you read part two of the series before you do anything ….. Let’s just say it’s not quite as clear cut as it seems. Edit - clarity.
    Post by: Blueskytoo, Mar 23, 2024 in forum: General ME/CFS news
  4. Blueskytoo
    Post

    Please help me find new bedding in the UK

    I buy John Lewis bedding be use of exactly this reason - I need the softness and smoothness too. I've got both their 200 and this one, the soft...
    Post by: Blueskytoo, Dec 30, 2021 in forum: Home adaptations, mobility and personal care
  5. Blueskytoo
    Post

    Sexual Desire, Depressive Symptoms and Medication Use Among Women With Fibromyalgia in Flanders, 2021, Van Overmeire et al

    Is it just me, or does there seem to be a whole slew of fibro/psych/women interaction studies at the moment? Could fibro be one of the new...
    Post by: Blueskytoo, Dec 1, 2021 in forum: 'Conditions related to ME/CFS' news and research
  6. Blueskytoo
    Post

    Virtual Reality-Based Therapy Reduces the Disabling Impact of Fibromyalgia Syndrome in Women..., 2021, Cortés-Pérez et al

    Me too :) (Edited to add the forum smiley instead of my iPad one which vanished…)
    Post by: Blueskytoo, Dec 1, 2021 in forum: 'Conditions related to ME/CFS' news and research
  7. Blueskytoo
    Post

    David Tuller interviews Adam Lowe about his experience as a lay member of the NICE ME/CFS guideline committee

    Congratulations @adambeyoncelowe, what a lovely picture! You both look so happy, wishing you many more years of love and laughter together ❤️.
    Post by: Blueskytoo, Nov 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  8. Blueskytoo
    Post

    Leg pain in neuropathic postural tachycardia syndrome is associated with altered muscle membrane properties, 2021, Rodriguez et al

    Me too, and my daughter who has POTS as well also struggles with this. We’ve both found lower leg compression stockings help with the pain...
    Post by: Blueskytoo, Nov 16, 2021 in forum: 'Conditions related to ME/CFS' news and research
  9. Blueskytoo
    Post

    Functional Neurological Disorders - discussion thread

    That’s really worrying. My eldest daughter has permanent post concussion syndrome as the result of a head injury from falling off her bike a few...
    Post by: Blueskytoo, Oct 22, 2021 in forum: Psychosomatic theories and treatments discussions
  10. Blueskytoo
    Post

    "Can someone as Young as You Really Feel That Much Pain?" - A survey on How People With Fibromyalgia Experience Healthcare in Sweden, 2021, Hasselroth

    My youngest daughter, who has a diagnosis of EDS and has since she was 17 (she’s now 25) has been told on more than one occasion and by a...
    Post by: Blueskytoo, Oct 11, 2021 in forum: 'Conditions related to ME/CFS' news and research
  11. Blueskytoo
    Post

    Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study, 2021, Bourke, White et al

    I actually DO have a lower threshold to pain, or at least an odd reaction to it. I do have a fibromyalgia diagnosis as well as an ME one, but it...
    Post by: Blueskytoo, Oct 5, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  12. Blueskytoo
    Post

    Orthostatic intolerance

    I have POTS but with hypertension rather than hypotension. My HR does the obligatory 30bpm+ rise on getting up from sitting or lying, and it can...
    Post by: Blueskytoo, Oct 2, 2021 in forum: Cardiovascular and exercise physiology (CPET)
  13. Blueskytoo
    Post

    The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model, 2021, Scott, Crawford, Geraghty and Marks

    Unfortunately, every bloody pain clinic I’ve ever been referred to has claimed the exact opposite…. Edited for clarity of phrasing. Blame brain fog.
    Post by: Blueskytoo, Sep 28, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  14. Blueskytoo
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Truly, the hospital situation is shocking - we have one road that goes from where we live down to Inverness and in the winter it’s often blocked...
    Post by: Blueskytoo, Sep 22, 2021 in forum: Drug and supplement treatments
  15. Blueskytoo
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Thanks, Milo, I hope it does too! And yes, thank you, I was aware of that regarding the injection, and perhaps I misunderstood the procedure that...
    Post by: Blueskytoo, Sep 21, 2021 in forum: Drug and supplement treatments
  16. Blueskytoo
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    I’ve just had a steroid injection for hip arthritis done, like literally last week, and so far I’m actually having worse symptoms of low-level...
    Post by: Blueskytoo, Sep 20, 2021 in forum: Drug and supplement treatments
  17. Blueskytoo
    Post

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Thanks so much for all your most generous hard work, Suzy, and for sitting through that marathon Zoom meeting for us all! Hope you’re not too...
    Post by: Blueskytoo, Sep 17, 2021 in forum: Disease coding
  18. Blueskytoo
    Post

    A general thread on the PACE trial!

    I particularly like the bit where the minutes say that “the trial statisticians report that this change would have no impact on the analysis.”….
    Post by: Blueskytoo, Sep 8, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  19. Blueskytoo
    Post

    A general thread on the PACE trial!

    This is in the very first minutes of the TSC from April 2004 at item 7: “The outcome measures were discussed. It was noted that they may need to...
    Post by: Blueskytoo, Sep 8, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  20. Blueskytoo
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    This just seems to be an exercise in frustration for us, frankly. We aren’t kept in touch with what’s happening, there’s no transparency about who...
    Post by: Blueskytoo, Sep 7, 2021 in forum: 2021 Cochrane Exercise Therapy Review
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