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Kim McCleary: Open letter to CFS community

Discussion in 'General ME/CFS News' started by _Kim_, Dec 11, 2009.

  1. _Kim_

    _Kim_ Guest

    December 11, 2009
    Open Letter to the CFS Community

  2. JustJack

    JustJack put on yer dancin' shoes

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    Sacramento CA
    Appreciate the letter of support

    I do appreciate the letter from Kim M.

    I also sit here, 31 years after onset and have to face the reality that our govt helped me stay sick this whole time. I am not really happy about the recent news because it makes me even more angry about the people that have been quieted and closeted away because they were coming close to the truth.

    I can't easily brush aside the studies in the 90's that were leading here but never made it to the light of day. I remember Dr John Martin and CCID and Dr Frietas, and, on the other hand, people like Dr Tietelbaum, who for years led us in the wrong direction with his arrogance.

    I think of all the research I have done in the last 13 years and how frankly we are right back to where we were then, the same language I have spoken for all these years and been laughed at and ridiculed by doctors.

    I think of the life that I have lost, my career, my friends, even my legitamacy
    dealing with this DD all this time.

    So, I do appreciate the letter Kim, but I cannot accept so easily what has happened. Please do not expect that my anger and dissappointment about my life, which has been cut short, and the fact that I have had to endure such suffering, self doubt and loss all these years, will just go away because finally the govt is being forced to bring this all into the light of day.

    Yes, we will come together now, but no one can expect that all these years of hurt and negation will just disappear among those of us who have suspected and have even known the truth. We have been forced to be underground and support ourselves while the world has not listened.

    We will recover and we will get well, I pray, but we will be loud and sloppy about it and we will ring the rafters with our voices so that those coming after us will, by God's will, not have to endure what we have.

    Thank you for understanding and listening,
    JJ
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    I've had CFS since 1970, and I got deeply involved in advocacy with the CFIDS Association starting in the late 1980s. I have one question.

    Is Kim McCleary the best possible person to lead the CFIDS Association?
  4. fresh_eyes

    fresh_eyes happy to be here

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    Yes, Roy S - and do folks who are unhappy with CAA have ideas of who they would rather see in that position?
  5. Cort

    Cort Phoenix Rising Founder

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    Personally I think she is - I think she's very innovative in what she does. I think shes taken a course over time that has been effective but has obviously lost standing in the patient community. So I want her to continue AND I want the CAA to be more adept in answering patients questions and explaining why they're doing what they're doing. I also want them to take more stands on important issues and be more patient friendly ie - be more of a place for CFS patients to go to by embracing more of the technology on the web.

    I completely discard most of the rumors on the CAA;ie that they are 'in bed' with the CDC, that they're in it for themselves, etc.; I think those are completely wrong and after looking at them closely I find they're based on virtually nothing.

    I do think the CAA can change, though, and if you look I think you'll find that its in the process of changing.
  6. Quilp

    Quilp Senior Member

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    I agree wildaisy

    Warm words from Kim, but what has she actually achieved ? She talks of making a difference and that was nearly twenty years ago. Have we come any further and if we have, has it been because of people like her or inspite of people like her ? If so where is the evidence ?

    Kind regards, Mark
  7. Marylib

    Marylib Senior Member

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    Our Kim

    Hi Wildaisy,

    "Our Kim on the forum" has been kindly posting links for us for some time. Hope this info helps you.
  8. fresh_eyes

    fresh_eyes happy to be here

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    Hi Wildaisy. I got Kim M's message via email, I figured our Kim did too.
  9. _Kim_

    _Kim_ Guest

    Oh no, I am just posting news. I signed up for the CFIDS newsletter. This letter came today.

    I have only been part of the CFS world for 2 months, I am still learning about the history of the disease, the politics, the research, and advocacy. I have no connection to Kim McCleary

    ETA: If you are wondering where my loyalties lie, my money has only gone to this forum and to WPI. I entered their Harley raffle and today is the last day to purchase tickets. If I win, I want to sell it on ebay and donate that money to WPI as well.
  10. Lily

    Lily *Believe*

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    The letter

    I received it as well this morning from CAA - apparently it went to all current members who signed up to receive the newsletter.
  11. alice1

    alice1 Senior Member

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    After 23 years of being ill and having 3 cancers on top of EBV I was wondering where you were Kim.
  12. jspotila

    jspotila Senior Member

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    No one at the CFIDS Association thinks patients should stop being angry. We are all - patients and non-patients alike - infuriated at the decades of government waste, negligence, inattention and worse. The Board and staff focus on channeling the anger and frustration into work that creates meaningful results and pursues change at NIH, CDC, Congress and DHHS.

    Don't stop being angry. Don't lose the passion that brought you here.

    Personally, I take that anger and use it because it gives me strength when my body has none.
  13. _Kim_

    _Kim_ Guest

    Welcome jspotila

    Just curious, do you work for the CFIDS Association?
  14. jspotila

    jspotila Senior Member

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    I have served as chairman of the Board of Directors in 2008 and 2009. I am a volunteer, as is every board member. I've been sick for 15 years.
  15. _Kim_

    _Kim_ Guest

    Thanks for being open about your connection to the Association. I hope your presence here can help to increase communication between the patient community and the CAA.

    Thank you, too, for your dedication and for the generosity of your time and energy as chairman of the Board.

    What are your thoughts on XMRV testing? I'm asking you, the patient, not the chairman.
  16. JustJack

    JustJack put on yer dancin' shoes

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    Sacramento CA
    ok...but I am still angry

    I certainly support what the CAA has been trying to do for the visibility of this DD. My perspective on this does include two years of lobbying for lobby days, attending many events, 12 years of reading the CAA website, hosting various fundraisers, doing press whenever I could and multiple dedications. I am entitled to by angry.

    I have too much pent up frustration, being trapped in my house, because I understand this cover-up and it's just not ok with me. After years and years with no validation, I cannot make this kind of u turn. Like the saying, "it is hard to turn an oceanliner."

    The proof will be in the pudding...

    JJ
  17. fresh_eyes

    fresh_eyes happy to be here

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    Jspotila, thank you for joining us! It's good to have you here.

    EDIT: Hey, j, are you Knittah of "Travels With Swatchy"??? I am a fan!
  18. Marylib

    Marylib Senior Member

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    New Zealand
    Hi Jspotila

    I want to welcome you too. I think many of us hope that we can have an ongoing exchange with the CAA, and this forum is terrific. Surely our communication will do us all good. :)
  19. jspotila

    jspotila Senior Member

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    I am watching with caution. We need a validated test, and more importantly, we need clinical trials of medications that show whether any antiretrovirals will help.

    The recent Womans Day magazine article on CFS included this statement, However, Dr. Mikovits says you may not want to bother [with testing], since the test cant be used to diagnose CFS and theres no treatment for XMRV right now. Dr. David Bell and Dr. John Coffin have also expressed reservations. http://www.cfids.org/xmrv/testing.asp
  20. jspotila

    jspotila Senior Member

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    Yes, it's me! I'm thrilled that you like Swatchy!!!!!! And I am very happy to be here as well.

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