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  1. Allele

    Let's talk wheelchairs and mobility scooters

    There are a couple electric wheelchairs for sale locally on craigslist, a KD Smart Chair (collapsible) and a Jazzy Select. I haven't been well enough to go see them, and my fear is I won't be able to get them in/out of my car by myself. I can't drive right now anyway due to symptoms, but the...
  2. Allele

    House built on old golf course - yes or no ?

    If you really love this place, what about asking the neighbours if they would be interested in sharing the cost of creating a covering for the whole parking area? They may all be wishing they didn't have to de-ice their cars in winter, and a shared project might be more economical for everyone...
  3. Allele

    David Tuller's new crowdfunding campaign (April 1, 2018)

    Yeah! I was excited to see it had gone up ten times the amount between the time I went to sleep and the time I woke up this morning :balloons:
  4. Allele

    House built on old golf course - yes or no ?

    @Dechi, have you looked into what the laws are regarding disabled people in your country? There are often exceptions made on things like car shelter/curbside parking for disabled and simply require a letter from your doctor. Sometimes it comes down to getting the design approved by the home...
  5. Allele

    David Tuller's new crowdfunding campaign (April 1, 2018)

    Go @dave30th! Delighted to contribute to your continuing awesomeness :trophy@
  6. Allele

    Low CD57 (lymphocyte killer cell 57) count Lyme marker

    JE, I respectfully beg you not to throw everyone out with the bathwater because you don't like naturopathic medicine, which is very different in the US than in Europe. The other piece of your advice that might not be translating to the reality of US politics, is that the IDSA (Infectious...
  7. Allele

    What is Action for ME's current (March 2018) position on the PACE trial?

    What really shocks me is how real medical science world has failed to laugh these people off the stage. The willingness to accept psychogenic anything, without any satisfying evidence whatsoever, is surprising and inconsistent with their oaths. The lack of objection by the general medical...
  8. Allele

    The Medical Care Blog: The myth of female hysteria and health disparities among women

    Gee, Wessely et al seem to have a lot of data, drafts, and computers go missing. Curious!
  9. Allele

    Levocetirizine dihydrochloride (Xyzal)

    Erin, we are all different but my experience with cetirizine and related antihistamines is that over time they stop making me super-sleepy. One way to achieve this is to titrate from a much smaller dose and work your way up to your optimal dose.(If you have pills rather than capsules, they're...
  10. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    Oh, I'm glad you highlighted that bit, I've corrected my typo back to BMC. And I agree with you about who will be pleased. Was unsure why the author said that. The article has bits from the SMC spin too and was an odd amalgamation of PoVs. Overall good though, I thought. Very glad your paper is...
  11. Allele

    Tinnitus poll: Do you experience it?

    It's interesting to hear about the tonsillectomy connection, @Invisible Woman. I really don't remember my onset of tinnitus, but it has been ages, and I had terrible tonsil issues all through my childhood until they were removed as a late teen. It would make sense that they could be connected...
  12. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    Before I sleep: @Hutan, @Tom Kindlon If this is viewed as copyright violation, please copy the (probably braindead) translation so Tom can have it, and delete my posts. Or leave it for a day or two so people can see it before axing it. I really must go sleep now. :bag::ninja:
  13. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    So, Scientific fraud or not? The whole question is whether the authors of the PACE trial are guilty of scientific fraud deserving a retraction of their study. If a salesman gives you a seed promising you that it will become an apple tree that will reliably give 20 apples and you follow the...
  14. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    What do the data show? The authors appear to have attentively followed the original PACE protocol and presented their own analyses in a reasonably clear and transparent way. Sensible assumptions were made about the missing data and the data was analyzed in different ways to show that the results...
  15. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    The different camps are divided with the patients calling fraud, while one part of the scientific community finds the trial simply limited. This is why a reevaluation of the Pace trial, published in BMC Psychology, was especially anticipated, but the result will not please either camp. The...
  16. Allele

    Syndrome de fatigue chronique : Que conclure de la réévaluation de l’essai clinique PACE ?

    I'm giving it a go, despite being stupid-tired. Chunking it down to several posts. Chronic Fatigue Syndrome: What Can we conclude from the reevaluation of the PACE Trial? Publié par : Jacqueline Charpentier Publication : 23 mars 2018Heure : 2:00 dans Syndrome de fatigue chronique Laisser un...
  17. Allele

    Giving Doctors the Time/Space To Be Doctors

    https://blogs.scientificamerican.com/observations/we-need-to-talk-more-about-physician-burnout/ We need new metrics and means of accounting for many systems, for sure. This article focuses on doctor burnout, which is a very important topic in healthcare, and is a very good starting place. But...
  18. Allele

    David Tuller - Trial By Error: News about Esther Crawley

    Shrewd move by Bristol. Now the parents of children harmed by her "clinic" will feel even more intimidated to lodge complaints or pursue legal action.
  19. Allele

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Exciting and hopeful! Very reassuring! Thank you so much for talking about your experience there, Brian, it's so helpful and also so nice to get a 'peek' inside.
  20. Allele

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Yes, it's a shame there can't be a <5yrs group and a >5yrs group. The illness looks so different over time, and I think that's one (of many) reason(s) we're having trouble with the diagnostic criteria. It would be so interesting to compare the data from oldies and newbies.
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