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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Mady Hornig: How do you solve a problem like CFS?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 4, 2013.

  1. CallieAndToby

    CallieAndToby Senior Member

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    florida
    It can happen in teenagers and young adults also (the pandas or pans).
  2. Simon

    Simon

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    Thanks for pointing that out. Mady Hornig did mention it, but I'm afraid it's one of the things I left on the cutting room floor.
  3. MEMum

    MEMum

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    Hi Simon
    Great article. Has Mady Hornig found anyone with ME/CFS with anti basal ganglia antibodies (ABGAs)? Our daughter has had ongoing strep infection (high ASO titres), also a couple of active viruses. Her main symptoms are chronic exhaustion, due to sleep delay/non-refreshing sleep and memory/learning problems. She has been diagnosed with ME, and found in November to have ABGAs to the pyruvate kinase receptor. She is 18 and does not have any of the typically reported PANDAS symptoms. Any thoughts?
    I also have a Biochemistry (and Physiology) degree from many decades ago,which helps me follow some of the research.
  4. Simon

    Simon

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    Thanks. And I'm sorry to hear about your daughter.

    Mady Hornig didn't mention anything about ABGAs re ME/CFS: the PANDAS section was completely separate from the ME/CFS stuff, really as an example of how other hard-to-study illnesses have been tackled, rather than suggesting identical mechanisms were at play.

    The planned work on ME/CFS protein host profiles might show up signs of autoimmunity - I'm afraid I don't know enough about the area to know if they could do that. Also, the targeted proteomics mass spectroscopy in the same stdy might itself show up ABGAs/ASO antibodies - apparently it depends on what proteins are in the reference database. If ABGAs and ASOs are present in ME/CFS patients, and are in the reference protein databases, then they could show up.

    However, I would say that Mady Hornig is big on autoimmune disorders so will be alive to the possibilities. If nothing shows up when the new studies report later this year it might be worth contacting her to raise the issue.
    WillowJ likes this.
  5. Simon

    Simon

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    When I mentioned this blog to my nieces, Rebecca and Emma, they insisted on looking up back-flipping mice on youtube, and this is what they found:
    snowathlete likes this.
  6. Bob

    Bob

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    Simon likes this.
  7. Simon

    Simon

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    I came across this PNAS article by Ian Lipkin where he talks about the '3 strikes' theory of genes, environment and timing and mentions the importance of prospective cohorts:
    What's particularly interesting about this is that the Chronic Fatigue Initiative are tapping in to a long-term prospective study run by Harvard, that includes biological samples and is likely to have sample from before the time any individuals with CFS got sick. So if people got infected a year before going down with CFS, there is a chance the study will have samples in that period.
    Firestormm, Valentijn and Sasha like this.
  8. Firestormm

    Firestormm Senior Member

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    Simon you have your digits in so many pies :) Thanks :thumbsup:

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