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  1. Allele

    Esther Crawley gets 'commendation' at 2017 Maddox Prize awards.

    Thank you so much for this, JE.
  2. Allele

    Unrest - reviews and general articles

    I wanted to add that the strong scene where she has to be lifted to the ground from her wheelchair by Omar was intended I think to illustrate to the audience what PEM looks like, as she had just been at a loud, crowded parade/festival, which she had been able to attend (in her wheelchair) due to...
  3. Allele

    Public Sessions Just Recriminalized Medical Cannabis

    https://apnews.com/19f6bfec15a74733b40eaf0ff9162bfa (I sure wish journos would stop calling it "pot", btw) This old fart who doesn't even know what it is or does, has just gone against state rights and has repealed the existing (imperfect) protections against the feds raiding legal Cannabis...
  4. Allele

    Unrest - reviews and general articles

    I'm sorry I forgot to answer you in the other thread. I don't recall much but I know she showed herself unable to walk, tolerate noise, light, touch. She talked about how her brain felt like it was misfiring. She showed herself unable to talk, and mentioned not being able to write her own...
  5. Allele

    Free nasal microbiome test/study at uBiome

    I didn't see anywhere to tell them of existing medical conditions--did anyone else find this?
  6. Allele

    Blog: "The PACE PLOS One data will not be released and the article won’t be retracted", James Coyne

    I'm starting to think the BPS people have photos of everyone else wearing tutus and having sex with animals or something :bag:
  7. Allele

    Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

    I'm also not certain it is ethical to have a medical professional not of the parents' choice at the meeting that was already likely high-tension for the parents; not to mention the medical professional doing this "evaluation" also happens to head up a clinic that also happens to be recruiting...
  8. Allele

    Blog: "The PACE PLOS One data will not be released and the article won’t be retracted", James Coyne

    Thank you Val. What a bunch of corrupt cronies. So over a world that supports and encourages this way of being.
  9. Allele

    Blog: "The PACE PLOS One data will not be released and the article won’t be retracted", James Coyne

    Am very unwell, can someone TL;DR please? I don't understand how the data will not be released if it is a condition of publication.
  10. Allele

    Let's talk wheelchairs and mobility scooters

    So much great feedback here, thank you all so much. I'm stupid tired right now so can't reply just yet--just wanted to thank you all for chiming in. I have questions, maybe tomorrow.
  11. Allele

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    The problem is the more we respond to her TED talk, the more she and they get to say "See? I was right! I was right! See the crazy loons coming out of the woodwork like I said they would? Pay no attention to the content of their harping, they're lunatics with an agenda. We're such brave...
  12. Allele

    Jen Brea comments on Esther Crawley's behaviour

    The reason it might be useful to try both of these now is bc the landscape is entirely more fertile at this moment. The momentum is building in a way that is adding credibility to us as a patient group and disease, as well as making it "safe", and even possibly "hot" for journalists to pick this...
  13. Allele

    Jen Brea comments on Esther Crawley's behaviour

    100% agree with this eloquent riposte. You speak for me :cool:
  14. Allele

    Coyne and Michael Sharpe on Twitter

    All I can say to his tweet is: Word
  15. Allele

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

    You need to read all the tweets (there are a lot!) as she fully calls her out, repeatedly.
  16. Allele

    Contribution to science of Regius Professor Sir Simon Wessely: a thirty year retrospective

    Have you written to her? It might be really good to send her quotes she can use that can't backfire.
  17. Allele

    Contribution to science of Regius Professor Sir Simon Wessely: a thirty year retrospective

    *shudder* I felt like taking a long shower after reading those quotes.
  18. Allele

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

    Haha, that I did! She does not go into it much iirc other than mentioning the newer CDC name is stupid and misleading (paraphrasing, maybe someone with a better memory can chime in.) I think greater focus on that is to come.
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