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Nominations to fill empty CFSAC seat(s)

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2013.

  1. jspotila

    jspotila Senior Member

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    Dr. Lily Chu has nominated herself, and I've heard that there are a few people (at least) writing in support. You can support any candidate by sending an email to cfsac@hhs.gov.
    beaker, justinreilly, WillowJ and 3 others like this.
  2. jspotila

    jspotila Senior Member

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    beaker, WillowJ, Bob and 1 other person like this.
  3. Bob

    Bob

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    Thanks for your informative blog, Jennie.
    He seems like a mind-body proponent: i.e. fix the mind (for whatever disease) and the body will follow.
    Those types of hypotheses are probably exactly the opposite of what we need represented on the CFSAC.
    Such a holistic-type approach might help some patients (e.g. in terms of feeling more positive), and can be welcome when nothing else is available, but it's not evidence based, and it's not a treatment.
    As for microglia cells, they may be over-activated (I have no idea), but an association does not indicate a cause.
    alex3619, beaker, WillowJ and 2 others like this.
  4. jspotila

    jspotila Senior Member

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    Precisely. Microglial activity can be measured through cerebrospinal fluid and PET scans, but it's early days for that even in a well-studied disease like Alzheimer's. There is this paper that proposes a hypothesis for how it might work in ME/CFS but I'm not aware of any published data establishing the prevalence of upregulated microglia in ME/CFS.
    Bob likes this.
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Dr Chu gave the most, and most important, input into my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”

    http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

    I have now had contact with her, on and off, for 3.5 years and have been impressed.

    With somebody like Dr. Kaplan on, I think it would be more important again to have somebody like her on.

    Anyway, five spaces coming up next year so people can support more than one person. Some good names being put forward, anyway, which is good. :thumbsup:
  6. SOC

    SOC Moderator and Senior Member

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    This is what I was afraid of when I heard Dr Kaplan was appointed. Sheesh. Who was it, exactly, who thought this guy was a good addition to the CFAC?
    Bob likes this.
  7. WillowJ

    WillowJ Senior Member

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    A pubmed search shows 4 papers relating ME/CFS and microglia. Two of them are reviews and one is a mouse paper.

    The only experimental evidence in humans seems to be a Light paper, "Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome."

    This seems to be related to P2X receptors, but from what I can tell from the paper with my very foggy brain, it seems much of our understanding of those receptors may come from a mouse model anyway.

    So it does seem a bit speculative.
    Bob likes this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Does anyone know who Joe Landson is? An advocate? Does anyone know where he stands on issues? I need some more info before I can endorse.

    jspotila, any more nominations from your group?
  9. Dolphin

    Dolphin Senior Member

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    As I recall, Joe has given testimony live (in person) at quite a few of the meetings, often using humor to make points - there are probably clips on YouTube of these. I recall him challenging CBT.
    Last edited: Oct 26, 2013
    WillowJ and Kati like this.
  10. jspotila

    jspotila Senior Member

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    I have filed a FOIA to get his nomination letter(s).
    Liz Willow, beaker, WillowJ and 2 others like this.
  11. jspotila

    jspotila Senior Member

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    Joe has given public comment at the last few CFSACs. He also spoke on a panel at the April 25th FDA meeting. He was very compelling on that panel.

    Joe is a Navy veteran, sick close to 10 years I believe. Before he got sick, Joe was an Arabic translator for the Navy. He talked about going from translating two Arabic conversations simultaneously to being unable to interpret his own writing. He also gave several very specific examples of confusion he's experienced. His comments clearly struck Dr. Sandra Kweder and other FDA folks.

    In terms of advocacy, Joe helped us file the request for an investigation into Eileen's allegations from the May meeting. He provided a perfect transcript of the recording provided to me by another advocate (who may want to be anonymous which is why I'm not crediting him). Joe has been tracking the issues closely, and his views are aligned with many in the advocacy community.

    Edited to add: I am aware of several other nominations in the pipeline, but don't have permission to share that info at this point. I'm hoping letters will go in before Monday morning so I can share. And there's actually no deadline for emails in support of a candidate. As long as someone is nominated by 5pm Eastern on Monday, I think people could send emails next week in support. That's not official - just my interpretation of how quickly they will get moving on the nominations.
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  12. Mark

    Mark Acting CEO

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    Looks like I spelled Joe's surname wrong in our article on Day Two of the last CFSAC, but there's a photo and summary of his testimony here (search the page for 'Lanson'):
    http://phoenixrising.me/archives/17313

    I remember his elephant puppet 'irrelevant' - who never forgets - from his CFSAC testimonies.
    WillowJ, Kati and Dolphin like this.
  13. Bob

    Bob

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    To support a candidate (or multiple candidates) who specifically do we address our correspondence to? Would it be to the CFSAC committee in general?
    And should I just say that I am a patient and that I wish to support particular nomination/s?
    Would it help to give a short reason for my support? e.g. "the candidate has an intimate knowledge of the illness and the science and would represent patients well" ?
  14. jspotila

    jspotila Senior Member

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    Your example is great. You can address either Martha Bond or Dr. Nancy Lee at cfsac@hhs.gov. Your email could simply say, "I am writing to express my support for the nomination of XYZ. I believe that XYZ should be appointed to the CFSAC because of [reasons]."
    beaker, WillowJ, Nielk and 2 others like this.
  15. WillowJ

    WillowJ Senior Member

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    has anyone gotten a reply to a message supporting a nomination?
  16. jspotila

    jspotila Senior Member

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    Dr. Betsy Keller (exercise physiologist, Ithaca College) has been nominated by Dr. Maureen Hanson. Dr. Keller did my exercise testing last year, and she follows the Snell/Stevens methods.

    At least one more nomination is in process, and I hope others will post nominations they have made or can confirm as well.
    SOC, beaker and alex3619 like this.
  17. jspotila

    jspotila Senior Member

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    Dr. Gordon Broderick has been nominated by Dr. Nancy Klimas.
    SOC, beaker, alex3619 and 1 other person like this.
  18. jspotila

    jspotila Senior Member

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    And one more! Dr. Jose Montoya was nominated by Matina Nicholson.
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  19. Dolphin

    Dolphin Senior Member

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    Lots of choice. And lots I prefer over Dr. Kaplan!
    WillowJ, jspotila, Purple and 2 others like this.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sent in my endorsements to cfsac@hhs.gov attn. Martha Bond:

    Prof. Leonard Jason
    Dr. Lily Chu
    Mary Dimmock
    Dr. Derek Enlander
    Donna Pearson
    Dr. Gordon Broderick
    Dr. Betsy Keller
    Joe Landson
    Prof. Jose Montoya
    jspotila and Bob like this.

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