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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Mainstreaming ME Research: The 8th Invest in ME International ME Conference, 2013

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 3, 2013.

  1. Michelle

    Michelle Decennial ME/CFS patient

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    Quick comment regarding WPI/Mikovits and PWME having lots of immature B-cells. At last year's press conference for the negative XMRV study, Dr. Lipkin mentioned that when he was working on the Borna virus-CFS paper in 1999*, he noticed "there was an enormous amount of immuno-reactivity that appeared to be non-specific in these individuals. So at a time when people were saying this was a psychosomatic disorder I said '2/3-3/4 of individuals whom we've studied have polyclonal B-cell activation. They are sick.'" Clearly people have been noticing B-cell issues in ME/CFS for awhile now.

    That said, when I read Mark's review of Dr Bansal's presentation, it was the one report that made me "ohhhh" out loud, mostly because it was the most original (imho). And then I got goosebumps when IiME referred to the "magnitude" of Fluge/Mella's newest findings. Thanks for the hard work, Mark!


    *Absence of evidence of Borna disease virus infection in Swedish patients with Chronic Fatigue Syndrome. Evengård B, Briese T, Lindh G, Lee S, Lipkin WI. J Neurovirol. 1999 Oct;5(5):495-9.

    (Also interesting to note that Brigitta Evengard worked with him on the 1999 paper and a 1997 Borna virus paper.)
     
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  2. Michelle

    Michelle Decennial ME/CFS patient

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    While feeling my patella pop back into its groove this morning while turning over in bed, I remembered a little nitpick with regards to EDS. It is not an immune or autoimmune disease. It is an inherited (or in my case a de novo mutation) genetic disorder in which the body is not producing enough collagen for certain types of tissue, depending on the form of it that one has. I do, however, agree with Dr. Bansal regarding why those with EDS might have such a high prevalence of ME/CFS: stress resulting from constant trauma in which the immune system is being called upon to repair injured tissue over and over again. Moreover, fatigue is inevitable as, say, muscles are tasked with, above and beyond their own job, compensating for ligaments and tendons that cannot do their job very well. For those with Type 3 Hypermobility form, developing Fibromyalgia is almost a given as the brain becomes more and more "efficient" at reading pain signals from all of these injuries. A model of ME/CFS in which the immune system becomes dysfunctional as a result of it being stressed is eminently compatible with the orthopedic, dermatological, and gastroenterological traumas that occur in EDS.
     
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  3. Bob

    Bob

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    SOC likes this.
  4. Snow Leopard

    Snow Leopard Senior Member

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    Thanks for the summary.

    "Hooper accepts with his shortest ever speech." Nice one!
     
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  5. Snow Leopard

    Snow Leopard Senior Member

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    I doubt much will go through, because it is judged on the 'art' at the time, but if the medical practitioner treated you badly for other reasons as well, then you might still have a case.
     
  6. Bob

    Bob

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    Latest blog by CFS Patient Advocate
    Friday, June 7, 2013
    Text of Linda Tannenbaum's Pre Conference Dinner Speech for Invest In ME Conference
    http://cfspatientadvocate.blogspot.co.uk/2013/06/text-of-linda-tannenbaums-pre.html

    (It's very inspiring, and worth reading. It's mainly about the OMI-MERIT initiative.)

    ------------------------------------------------------------------------------------------------------------

    From this article, I've finally found out what "OMI-MERIT" means!
    > The Open Medicine Institute-Myalgic Encephalomyelitis Roundtable in Immunology and Treatment.

    The OMI-MERIT flyer in the IiME journal is on page 35:
    http://investinme.org/Documents/Journals/Journal of IiME Vol 7 Issue 1.pdf

    Pre-register for OpenMedNet, here:
    https://www.openmednet.org/registration/MECFS

    Sign up to the Open Medicine Foundation newsletter, here:
    https://app.etapestry.com/onlineforms/OMF/contact1.html

    See the full list of OMI-MERIT research proposals, here:
    http://openmedicineinstitute.org/research-initiatives/mecfs-merit/
     
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  7. Firestormm

    Firestormm Guest

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    Not sure if this date and info. had come out of the conference discussion previously on this thread :)
     
  8. Bob

    Bob

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    Ah, that's important information. I'd read a suggestion that serious ill-effects might only be experienced by cancer patients, but I hadn't seen this specific info before. Thanku Firestormm.
     
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  9. Sasha

    Sasha Fine, thank you

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  10. Sasha

    Sasha Fine, thank you

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    Oh! I should read stuff before I post it:

    Unfortunately we have had a request from Dr Øystein Fluge and Professor Olav Mella to hold off from including Dr Fluge's presentation in the DVD at this time.

    This is because the Norwegian researchers have still not finalised their hypotheses for symptom maintenance in ME and do not feel comfortable with having this material distributed at this time. We are therefore bound to honour our agreement with Professor Mella and Dr Fluge.

    However, the DVD still holds a great deal of education. It was the best conference yet.

    We will retain the presentation from Dr Fluge and hope to come to an agreement on when it can be released at some point in the future.
     
    Firestormm likes this.

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