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Video: ME/CFS Alert, "Interview with Colleen Steckel, ME advocacy.org Ep 107"

Discussion in 'General ME/CFS news' started by Andy, May 18, 2019.

  1. Andy

    Andy Committee Member

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    Andy, May 18, 2019
    #1
    MEMarge, adambeyoncelowe and andypants like this.
  2. Trish

    Trish Moderator Staff Member

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    I have just watched it.

    I can see why some people who support the ICC criteria and primer are not happy with the broader focus of the IOM criteria, but I am concerned about the insistence that only those meeting ICC and or CCC have 'true ME'. How can we know until we have biomarkers that divide us into biological subgroups rather than descriptive ones?

    Also the focus of the group seems to be very much on sharing 'what works for some patients' as treatments, rather than on scientific evidence.

    I wish them well, but don't think I want to be that exclusive without biomedical evidence to back it up. [edit: nor to I want to fall down the rabbit hole of taking dozens of different supplements and medications a day on the basis that they 'work for some people']

    Edit: She also repeated several times that the NIH study found that 6 of the 19 ME patients they have studied in the first phase didn't have ME after all but had something else. I think that is inaccurate. My impression from Brian Vastag (@B_V) was found to have ME, but to have something else in addition to ME that excluded him from the study, because that second condition could confuse the data, and with only studying a small sample they need to be sure the evidence they collect from patients is about ME, not something else.
     
    Last edited: May 18, 2019
    Trish, May 18, 2019
    #2
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  3. Andy

    Andy Committee Member

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    Cort says
    in an article discussed in this thread
    https://www.s4me.info/threads/dr-na...-a-few-rare-diseases-pop-up-23-mar-2019.8723/

    Brian's comments on his diagnosis in the same thread can be seen here, https://www.s4me.info/threads/dr-na...es-pop-up-23-mar-2019.8723/page-3#post-163721
    where he says, in part,
     
    Andy, May 18, 2019
    #3
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  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I remember watching Brian Wallit's talk about this at the NIH conference. The figures he showed seemed to put the high percentage of rare diseases in the intramural study into perspective. See: https://www.s4me.info/threads/nih-a...th-and-5th-april-2019.7745/page-8#post-157839

    It's possible that Nath gave Cort some more recent figures but I wouldn't draw any conclusions from this information or use it as an argument until we know more about it.
     
    ME/CFS Skeptic, May 18, 2019
    #4
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I remember hearing that a considerable percentage of the population have a rare condition.
    I just had a quick search and found this in the first search result:
    https://globalgenes.org/rare-facts/
    "one in 10 people are affected by a rare disease".

    I could imagine it is possible that the figures could be higher with more intensive examination.
     
    Dolphin, May 19, 2019
    #5
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