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  1. Allele

    Esther Crawley's contribution to #MEawarenessweek

    Sadly, we have our own versions of this https://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html
  2. Allele

    Blog: Beware of Aiding in the Burial of ME!

    Even more bizarrely, the blog writer who is so vehement about ME has overlapping comorbid conditions that muddy the waters even further. The irony.
  3. Allele

    Ideas For Marketing ME More Effectively...

    @TiredSam, I'm 66.7% sure you're on a roll today!
  4. Allele

    Chronic pain often has no physical cause. Psychotherapy can reduce the suffering.

    Yeah psychos, show me definitive proof that there is even such a thing as psychogenic pain. Inexplicable pain just means that the explainer can't explain it. These people are so goddam arrogant and I don't understand why they've been allowed to ride roughshod all over science, medicine, and...
  5. Allele

    Q&A with Prof Chris Ponting May 2018

    Thanks for clarifying, @Cinders66. I don't have an action plan either :confused::slugish:!
  6. Allele

    Chronic pain often has no physical cause. Psychotherapy can reduce the suffering.

    Also the assertion that "chronic pain often has no cause". The hubris!
  7. Allele

    Q&A with Prof Chris Ponting May 2018

    What do you propose then, other than just an awareness film and just a coordinated campaign and movement exerting pressure and scrutiny making it harder for the establishment to continue failing us? I have never ever seen such a continued flow of accurate reporting across such a widespread...
  8. Allele

    Esther Crawley's contribution to #MEawarenessweek

    That is so utterly appalling there are really no words. How is this person still in practice, much less getting cushy appointments to children's health?! This world is totally upside down.
  9. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    It is a very rare person who can admit they were terribly wrong, especially in a professional context. We know he is wrong, and trying to get him to admit it ought not be a goal or expectation. It's never going to happen and it's not important. He is the old guard and the new guard has...
  10. Allele

    Sweden stands up for open access – cancels agreement with Elsevier

    Since academics are under pressure to "publish or perish", I wonder if peer review could be offered as an alternative to those who'd rather do that than publish all the time? That could be an interesting solution maybe?
  11. Allele

    Ideas For Marketing ME More Effectively...

    Thank you so much for doing that, Inara. That was a lot to transcribe. That was probably it, my memory is so hazy. I thought there was one that specifically mocked CFS patients, but maybe it was that EBV one, or that horribly cruel piece of disdain written by the staff. Either way, we've been...
  12. Allele

    Ideas For Marketing ME More Effectively...

    Does anyone have a copy of Osler's Web? I think Hillary wrote in there the content of the horrible bigoted poster that CDC had on the wall for years about us. I would like to remember what it said, and cannot. I may be confounding two stupid CDC things, but it might have said something about...
  13. Allele

    Ideas For Marketing ME More Effectively...

    @Trish , I read @Barry's statement to mean past advocacy efforts have fallen short in the rebranding arena (by no fault of their own,) not the more recent inroads by the excellent folks you mention. Nor did I read him to mean to disrespect those past efforts--the time and the means were simply...
  14. Allele

    Ideas For Marketing ME More Effectively...

    Yes! We need to rebrand popular opinion, bc popular opinion was long ago hijacked by propaganda and misopathy. The propaganda was itself disseminated by professional means, so we are now using professional means in our own right to get the truth out. So there is a little education mixed in...
  15. Allele

    Ideas For Marketing ME More Effectively...

    Impossible to "like" your post enough, Luther. ^This This This and This!
  16. Allele

    Blog: 'Postcards from the Fringe': Families give evidence about Named Persons [Scotland]

    Can someone give a brief summary about what Named Persons is?
  17. Allele

    Ideas For Marketing ME More Effectively...

    I agree that we need professional marketing--and lobbying. With regard to OP's slogan suggestion I find there is a huge and important difference between the tag line ME:A Living Death and Disease of the Living Dead. The former describes something real, the latter conjures images of AMC's...
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