1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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...
Discuss the article on the Forums.

My CFSAC Submission

Discussion in 'Action Alerts and Advocacy' started by caledonia, Oct 13, 2009.

  1. caledonia

    caledonia

    Messages:
    2,876
    Likes:
    1,471
    Cincinnati, OH, USA
    Hi, I'm cross posting this from the MAD social group, because I don't think too many people have seen it over there.

    =-=-=-=-=-=-=-

    Here's mine. I know I kind of went out on a limb bringing in the DeFreitas' retrovirus because there is no proof it's XMRV right now, but what the heck - it's what we're all thinking, isn't it?

    Thanks Tom K. for the suggestion to ask for Peter White to be ousted too. I included that.

    If anyone wants to use or copy any part of my letter, feel free to do so.

    =-=-=-=-=-=

    The track record of the CDC concerning CFS over the past 25 years has been abysmal, negligent and criminal. During the Incline Village outbreak of 1985, the CDC couldnt find a viral cause of the illness, and so it claimed that CFS must be psychological. The CDC then proceeded to minimize and psychologize the illness every chance it got, ignoring the mounting evidence of the thousands of studies proving otherwise.

    In 1990 Elaine DeFrietas found a novel retrovirus associated with CFS. The CDC couldnt (or wouldnt ) replicate her study and proceeded to discredit DeFreitas and her research. This lost opportunity is just one small example of the abuse we patients have suffered at the hands of the CDC.

    Lo and behold, 20 years later, the Whittemore Peterson Institute has found a retrovirus, XMRV, strongly associated with CFS. Considering that this is only the 4th retrovirus discovered in humans, its highly likely XMRV is the same as DeFrietas retrovirus. They were able to do this in only 2 years with only $1 million dollars.

    How many years and millions of dollars has the CDC wasted on producing nothing? How many patients have suffered, become disabled and impoverished, and died because the CDC has been giving us lip service, instead of real service.

    We have been telling you this for the past 25 years and you havent listened the illness is a real biological illness, not psychological. The horrible name CFS causes us not to be taken seriously by doctors, disability insurance companies, our friends and families. We have a serious illness and we cant get diagnosed, much less get proper treatment or a cure.

    And now XMRV has been found to have an incidence of 4% in the general U.S. population. By comparison, another retrovirus, HIV, has been termed an epidemic at a mere 0.6% incidence. Lest you think XMRV is not that serious, its also associated with prostate cancer, fibromyalgia, and atypical MS, which researchers say is likely just the tip of the iceberg.

    The CDC has a choice, it can continue on its psychological track, looking outdated, negligent, greedy, and foolish, or it can get with the program and start giving us CFS patients the treatment we really need and deserve.

    To do so, the following changes are required NOW, not another 25 years from now:
    1. Top level management who support a psychological cause to CFS should be removed - William Reeves should be fired; ties with Peter White should be cut.
    2. The name "chronic fatigue syndrome" should die a quick death and be replaced with Myalgic Encephalomyelitis.
    3. The empirical definition (which 38% of the time misidentifies depression as CFS) should die a quick death and be replaced with the Canadian definition
    4. The proposed 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.
  2. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    Central Texas
    caledonia testimony

    I like the clarity, and it also has a lot of energy.

    Very good points at the end. Love the "die a quick death."

    Thanks for doing this!

    Kelly
  3. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    I quite like the way you numbered and specified your points at the end. I just posted a draft of my letter here and am seeing (and have been seeing) great ideas/better ideas all around me! They are all for an excellent cause though, and I imagine any letter could speak to any member of the committee, right?!
  4. caledonia

    caledonia

    Messages:
    2,876
    Likes:
    1,471
    Cincinnati, OH, USA
    Anything you can do is great, because:

    1. 80-90% of us are undiagnosed and don't even know we have CFS
    2. Most of the rest of us are too sick to participate in stuff like this, even if we are aware of it.

    So one letter represents probably thousands of patients and their familes/friends.
  5. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    These are excellent points. I manage to forget most of the time just how many people might be surrounded by less awareness than I am. I hope your sentiment of one letter representing a thousand other people makes it into the head of someone from CSFAC--it's a touching sentiment.
  6. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    I've written a one-page statement for the CFSAC, but where should I send it?

    I have an e-mail address from the website: cfsac@hhs.gov. Is that where it goes?

    Thanks.

    P.S. I noticed that someone had moved a post from the M.A.A.D. forum to this string. I thought that was a good idea.
  7. Lisa

    Lisa Senior Member

    Messages:
    446
    Likes:
    15
    Western Washington
    Sounds good caledonia :)

    Its great to read what people are sending in. :)

    Lisa :)
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,704
    Likes:
    5,518
    Yes, maybe put "Written Testimony" in title.
    Only 2.5 hours now.

See more popular forum discussions.

Share This Page