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One person summarises the various written testimonies to the CFSAC meeting (Oct 2009)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 3, 2009.

  1. Dolphin

    Dolphin Senior Member

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    As people know, the written testimony of 29 people to the CFSAC Oct 2009 meeting can be read at:

    http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

    Anonymous (PDF) (10KB)
    Anonymous (PDF) (10KB)
    Anthony Foran (PDF) (11KB)
    Bonnie G. Mayer RN (PDF) (16KB)
    Barbara Soliday (PDF) (8KB)
    Chanda Hines (PDF) (10KB)
    Chris Niestepski (PDF) (81KB)
    Claire Prideaux (PDF) (28KB)
    Confidential (PDF) (9KB)
    David Hall (PDF) (7KB)
    Ester Siebert (PDF) (8KB)
    Joan Landry (PDF) (37KB)
    Kasper Ezelius
    Lily Chu (PDF) (16KB)
    Lolly McDermott (PDF) (12KB)
    Mark Rowel (PDF) (9KB)
    Mary Barker (PDF) (20KB)
    Mary Schweitzer (PDF) (19KB)
    Pat Mayer (PDF) (9KB)
    Pat Sonnett (PDF) (36KB)
    Patrick Holaday (PDF) (11KB)
    Sarah Goodwin (PDF) (15KB)
    Sharon Stapleton (PDF) (29KB)
    Richard Kugler (PDF) (29KB)
    Stacey Gray (PDF) (11KB)
    Sue Bailey (PDF) (8KB)
    Susan Magowitz (PDF) (21KB)
    Tammie Page (PDF) (93KB)
    Tom Kindlon (PDF) (74KB)

    -------
    My guess is that most people won't read all of these and a lot of people will be put off and won't read any of them.

    On an open access message-board, one person (after prompting) has given her impressions of much of the testimony (she may add more).
    This can be read at:
    http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1374484

    I just thought I'd give this a plug.

    Statistics may be kept on how often testimony is downloaded.

    People can also suggest good ones to read in this thread.
  2. _Kim_

    _Kim_ Guest

    Okay, I'm one of the dorks who read every one of the testimonies.
  3. Dolphin

    Dolphin Senior Member

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    That's great.
    My point wasn't to criticise those that have.

    I was hoping that reading some comments on them, that some other people might read ones that they hadn't read. I presume people put quite a bit of time in writing them.

    Have you some you'd like to recommend? I'm more interested in hearing positive things rather than negative things (i.e. out of 10, if somebody liked 6 and disliked 4 to talk more about the 6 they liked) (but if critical points can be made tacticfully, that'd be ok), don't want a competition, just trying to get people interested.

    And also I don't reckon I'll get to read them all myself so interested in summaries or tip-offs.
  4. _Kim_

    _Kim_ Guest

    One of our own

    I was particularly impressed by the testimony submitted by Sarah G. - one of our active members here. I was partial, I'm sure, because I had read her posts prior to sending it in about her uncertainty. I thought it came out really good. She set up each paragraph with a powerful topic sentence and then followed up with poignant examples.

    • The CDC empiric definition is irreparably flawed and must be immediately and permanently discarded.
    • CBT and GET are not cures for this disease and it is dangerous for government researchers to suggest that they are.
    • If the CDC is not willing to participate in finding a CURE for this disease than their funding should be zeroed out and given to an agency or group that will.
    • A GAO investigation is needed immediately into contracts with Emory University while
      CDC officials are benefiting financially from this partnership, in a glaring conflict of interest. as well as into work done by ABT associates contractors, who appear to have been paid for work never completed, and work not done at all as it was contracted.
    • Why hasn't the CDC responded to critiques of it's program and five year plan that have come from researchers and organizations?
    • If the CDC team is replaced with researchers who are willing to conduct research into the physical nature of this disease and are using a definition that is in line with what all other agencies and groups are using, then their funding must be drastically increased to make up for the lost time and missteps of the previous team.
    • Where are doctors supposed to find accurate information for their patients if they cannot get it from the CDC? How are medical schools supposed to teach new doctors about this disease?
    • It should not be forgotten that we are in desperate need of a new, far more accurate, name for this disease.
    • Please do what you can to speed up passage of the ICD 10 codes in Congress. This is something that will be useful and important to the medical community as a whole.
    • How long must we continue to waste away and wait for something to change? It is all well and good for you to pass recommendations that seem to address what we are all saying, but until your reccomendations have clout and are acted upon by the leaders of the DHHS they will continue to be meaningless.
  5. shrewsbury

    shrewsbury member

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    thanks for posting this TomK

    Just wanted to add, than when you go to the listing of written testamonials, the testimonies are separated so that you can read just one at a time.

    Seems there were about 20 testimonies in person over the two days, and about 30 submitted as written testimony only before the meeting.

    Well - great timing for Aftermath & Cort to have started this forum. Before the next meeting we should have more ammunition as we get more info on xmrv and from other research, and will have the wonderful tool of this forum and each other to FLOOD them with testimony.

    Regarding the open forum posting with a summary of some of the testimonies, I'm a bit slow today and it took me a while to figure out that the summaries were about 3/4 of the way down the page.

    islandfinn:)
  6. Dolphin

    Dolphin Senior Member

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    Excellent post, _Kim_ and it reminds me that I read SarahG's submission and thought it was excellent.

    But you summarising it with all those points shows the large amount of points she covered. Pity we can't get course credits for doing them!
  7. sarahg

    sarahg Admin Assistant

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    Pennsylvania
    No kidding, I could be halfway through grad school for all the s**t I've had to learn. When I can get a legit masters degree from my couch at my speed, I'll be in heaven! (although having the poli sci background wading through all of this has been handy)

    Thanks Tom and Kim

    You are both so sweet and I'm glad it caught your eye. There are some other really great ones, I have to go back and remember which really stood out.

    I was ever so lucky to have been on almost 3 months of immune globulin treatment when I wrote that ( I lost it for about a month and a half, and got it back about 3 weeks ago and it's going to take a while for my brain to be that organized again)

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