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  1. Allele
    Post

    Breathlessness and air hunger in ME/CFS

    @hedgehog from my own experience of air hunger I can say it long predated Ketotifen use; Ketotifen had no effect on AH either way. One thing that...
    Post by: Allele, Dec 31, 2017 in forum: Cardiovascular and exercise physiology (CPET)
  2. Allele
    Post

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    OMG when I saw the title of this thread I was prepared to see another total shitfest of SMC propaganda. Between this article, Tuller's dogged...
    Post by: Allele, Dec 31, 2017 in forum: Psychosomatic news - ME/CFS and Long Covid
  3. Allele
    Post

    Unrest gets a mention in "The best documentries of 2017" @ Vox

    I had no idea as I was writing the above that this steamroller of tweets to EC had been posted by JenB. Holy cow! The megaphone just got turned up...
    Post by: Allele, Dec 30, 2017 in forum: General ME/CFS news
  4. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    Thank you, @MErmaid, I wouldn't have thought to ask for an open-box discount!
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  5. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    @Thanks so much @jeckylberry , and welcome to the forums! It's so very helpful to hear all these details as I hone in on the right choice for me....
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  6. Allele
    Post

    Unrest gets a mention in "The best documentries of 2017" @ Vox

    @Samuel , Jen has stated that she chose to make a "Sundance"-style film. I think this was due to the positive response she got from her initial...
    Post by: Allele, Dec 30, 2017 in forum: General ME/CFS news
  7. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    @Invisible Woman thank you, that's a great idea about the socks, I wouldn't have thought of that under my own brain power!
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  8. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    Oh, @Wonko, I'm so sad to hear all this. Wish I had a magic wand :hug: @Milo, thank you for your insights and experience, it's so helpful to hear...
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  9. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    Also I suddenly feel bad about tagging @Gingergirl, as I've just remembered her circumstances are extra challenging right now. Sorry Gingie, and...
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  10. Allele
    Post

    Let's talk wheelchairs and mobility scooters

    Oh dear, @Wonko, I must have wished you had one and confused that with "remembering" you had one:confused:
    Post by: Allele, Dec 30, 2017 in forum: Home adaptations, mobility and personal care
  11. Allele
    Thread

    Let's talk wheelchairs and mobility scooters

    So I am finally (grudgingly) admitting to myself that life might be less crashy and my horizons expanded a bit if I had a power wheelchair. I'd...
    Thread by: Allele, Dec 30, 2017, 162 replies, in forum: Home adaptations, mobility and personal care
  12. Allele
    Post

    Aluminium based adjuvants and a disease hypothesis by Gherardi

    And an entire army of paid astroturfers and brigaders to make sure a "quick google" will lead with results that cast doubt/shade. There is a...
    Post by: Allele, Dec 29, 2017 in forum: ME/CFS research
  13. Allele
    Post

    Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

    I'm so sorry you're having to fight so hard just to stay ok in the hospital @Paradoxfloss :banghead: :hug: Still, what you have accomplished is a...
    Post by: Allele, Dec 29, 2017 in forum: Advocacy Action Alerts
  14. Allele
    Post

    Book due out: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery"

    Tell that to Einstein, old man.
    Post by: Allele, Dec 26, 2017 in forum: General ME/CFS news
  15. Allele
    Post

    Does anybody know this?

    I am not a doctor but I would suggest ruling out a TIA bc it sounds an awful lot like that.
    Post by: Allele, Dec 24, 2017 in forum: General and other signs and symptoms
  16. Allele
    Post

    Does anyone else get IBS as part of a crash?

    Absolutely yes, IBS accompanies flares/crashes. All part of the inflammation picture, I reckon.
    Post by: Allele, Dec 24, 2017 in forum: Gastrointestinal and Urinary
  17. Allele
    Post

    Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

    Welcome, @Paradoxfloss and thank you for telling us your hospital experience. I'm so sorry you're having such a hard time, and on Christmas, but...
    Post by: Allele, Dec 24, 2017 in forum: Advocacy Action Alerts
  18. Allele
    Post

    Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

    Hear hear, Samuel. Very well said and a much-needed shift in perception. It's not our fault we have been conditioned to see things this way, but...
    Post by: Allele, Dec 24, 2017 in forum: Advocacy Action Alerts
  19. Allele
    Post

    Book due out: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery"

    FTFY
    Post by: Allele, Dec 23, 2017 in forum: General ME/CFS news
  20. Allele
    Post

    Greater specificity of activity memories in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (2017) Maryanne Martin

    So exercise-based treatment studies by psychologists get all the funding. Real science pointing to cellular energy dysfunction gets ignored by...
    Post by: Allele, Dec 23, 2017 in forum: Psychosomatic research - ME/CFS and Long Covid
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