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  1. Allele

    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 made it noticeably worse was GABA supplementation, although that came with other side effects for me. You might want to see if you are taking...
  2. Allele

    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 persistence, and Jen's epic tweeting, I dunno how much shit EC's spade will be able to throw any more. Bravo everyone, BRAVO!
  3. Allele

    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 a couple notches!
  4. Allele

    Let's talk wheelchairs and mobility scooters

    Thank you, @MErmaid, I wouldn't have thought to ask for an open-box discount!
  5. Allele

    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. What a gorgeous feathered friend in your avatar!
  6. Allele

    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 pitches including the (prestigious) invitation to workshop it there. I personally think this was a very wise choice, bc the kind of film it is is very...
  7. Allele

    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!
  8. Allele

    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 practical tips. And yes, a good point about overstimulation etc kind of cancelling out the benefits. Still, it'd be nice to visit somewhere else...
  9. Allele

    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 please don't use your energy replying, just take good care of yourself.
  10. Allele

    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:
  11. Allele

    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 love to hear from others who have one what features you love/hate/wish you had. I only have a carer one day a week, so the thing would ideally be...
  12. Allele

    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 powerful industry behind masking this issue, so much like with ME, the good research one would like to see just doesn't get done. It's a terrible shame...
  13. Allele

    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 staggering and awe-inspiring feat. Give yourself credit for having not just made your own stay much better, but having educated an entire team of...
  14. Allele

    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.
  15. Allele

    Does anyone else get IBS as part of a crash?

    Absolutely yes, IBS accompanies flares/crashes. All part of the inflammation picture, I reckon.
  16. Allele

    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 very glad to learn you have had such positive responsive from your health care team regarding ME. The game really has changed, wow! It is very...
  17. Allele

    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 it is our responsibility to change it.
  18. Allele

    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 psychologists. So we should do a study called "Poorer specificity of scientific attention in Psychology: Implications for your careers"
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