Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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ME-conference in Sweden with English-speaking lecturers Wed Oct 19th, available for streaming

Discussion in 'Upcoming ME/CFS Events' started by Kalliope, Oct 18, 2016.

  1. Mark

    Mark Former CEO

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    Sofa, UK
    Great tip! Thanks so much for posting about this Mango. There is a really interesting snippet right immediately before that as well, where she says that they are seeing higher use of glycolysis in naive B cells in patients (4.06.25) and they are just working that up now. Could that tie in with the paper just out from Stanford re: levels of ATP I wonder?
     
  2. Rooney

    Rooney Senior Member

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    At 4:07 of the recording:
    She speaks about how ignorant physicians are about the drug regarding risks. She's written 40 papers about the side effects. Why withhold this from us - use it off-label. Cancer patients can get smacked (my words) around by their drugs and ethics aren't involved for them. She seems so frustrated at the lack of care for us (isn't she wonderful)!

    She is a fab. presenter for the layman.
     
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  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    BurnA likes this.
  4. aimossy

    aimossy Senior Member

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    I just watched Jo Cambridge, this was a really excellent talk she gave and interesting with new information as well.
     
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  5. Webdog

    Webdog Senior Member

    Lucinda Bateman, in reviewing the IOM Report, emphasized "functional impairment" in ME/CFS/SEID patients. She emphasized this symptom to clinicians.

    Starting around 57:00:
    • "Debilitating loss of function, not just fatigue."
    • "With functional impairment being the emphasis."
    • "Clinicians should explore the impact of illness on occupational, educational, social and personal activities."
    • "There is nothing else really like this."
    • "It should be the primary responsibility of the physician to ask the question why the patient is unable to function."
    Loss of function is something that, in my experience, clinicians do not grasp or appreciate. Perhaps if they did, patients might get treated a bit better, and more importantly, not have to wait years for diagnosis.
     
    Sing, ZeroGravitas, ebethc and 6 others like this.
  6. BurnA

    BurnA Senior Member

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    Yes, one off the best talks I've watched.
    It seems like there is quite a bit going on.
    A couple of items in particular caught my attention:

    The attempts to associate symptoms with a cause ( antibodies ?)
    The mention of new work associating POTS with antibodies. ( Fedorowski - a paper was mentioned but I couldn't find it, also another one due I think )

    You get the impression this is all headed in the right direction, and Jo Cambridge knows exactly what she is doing and needs to do.
     
    snowathlete, Hutan, AndyPR and 3 others like this.
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I had to cringe at the doctor who didnt even know that MS was a b-cell disease
     
  8. mango

    mango Senior Member

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