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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Caa poll

Discussion in 'Action Alerts and Advocacy' started by leaves, Feb 21, 2011.

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How do you feel about The CAA?

  1. Caa is doing great!

    8 vote(s)
    4.0%
  2. There are some problems, but no drastic changes are needed

    11 vote(s)
    5.5%
  3. Caa needs to change direction

    6 vote(s)
    3.0%
  4. Caa needs to change direction and leadership

    174 vote(s)
    86.6%
  5. No opinion

    2 vote(s)
    1.0%
  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Follow the money and who pays the lobbyists.
  2. raven

    raven

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    A friend and advocate for 20+ years got a message from a former board member who said they can't speak out openly against the CAA or Kim so some pretend to support them while actually supporting the work of the WPI and others.
  3. raven

    raven

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    Wow, not sick but pretty angry. McCleary currently serves on the AABBs interorganizational XMRV Task Force. http://www.aabb.org/Pages/Homepage.aspx
    I'm afraid she'll also "resist" XMRV research.

    "The CFIDS Association of America commends the AABB (formerly the American Association of Blood Banking) for its actions to protect the safety of the nations blood supply by recommending that blood collectors actively discourage potential donors who have been diagnosed by a physician with chronic fatigue syndrome (CFS), chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.) from donating blood through the use of donor information materials made available at the donation site."
    http://www.cfids.org/xmrv/aabb-statement-june10.asp
  4. CBS

    CBS Senior Member

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    To summarize, at this moment the poll shows 96% of the respondents wanting the CAA to change direction (and nearly 93% feeling like that needs to be accompanied by a chancge in leadership).

    Only one person (0.8%) felt that things at the CAA were just fine.

    I want to try and clarify a bit about what a chancge of direction/leadership would look like.

    Personally, My highest priority is new leadership. I won;t be satisfied with a new face, but it is necessary that the CAA hire someone that can vigorously advocate for the sickest 25% of CFS patients. Based upon my own experience - as uncomfortable as it might be - that's where we are all headed.

    I'd flat out say forget about the CAA if it weren't for the some of the researchers they support. So here's a summary of my desires for a change in direction:


    • Until the CAA finds a strong advocate who appreciates the severity of this disease and who can communicate that consistently (behind closed doors and to the media), please stop trying to "help" me. You do not speak for me (or M.E.). We're better off without your public mumblings and half-baked "advocacy." Your inside voice is seen by a large number of patients as an insiders voice and it is becoming more apparent that what you are saying behind closed doors may not be what you are saying to the patient community. Passion can be reasonable and compromise is often just a way to protect your personal interests.
    • Clearly state who you think you are studying and for whom you are advocating.
    • Adopt a policy of transparency (all donors - even individuals - with any organizational ties related to ME/CFS should be made public). I personally have less of an issue with patients with no interests besides their health donating anonymously. Any donor individual donor having exceptional access or influence upon the BOD or the CEO ought to be made public.
    • Focus on research (you can do that without KM) that is directed at detecting a biomarker.
    Short of this, we're better off without the CAA. Regardless, we need to focus on the creation of an advocacy group that speaks with a constructive voice for ME patients.
  5. Andrew

    Andrew Senior Member

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    I dont think any CFS organization should decline to mention a study that has mild results with CFS patients. The problem is with how people interpret results. For example, if cancer patients are helped by CBT, nobody says There you go, cancer is all in the head. But the same study results will lead to people saying CFS is a mental condition. I think McCleary has been around long enough to understand this, but again and again, she fails to act upon this understanding. And so she reports in a dry manner with a couple qualifying sentences, but no framing statements to prevent the problem I described.

    I have to tell you, I've come to the point where I would not mind the CAA vanishing, even though we would lose all the helpful information on the web site. People look to patient organization as the voice of patients. I dont want CAA representing me. And its not because they publish results from CBT or GET studies. Its because of their inability to function in a way that's honest and politically astute.
  6. raven

    raven

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    I feel the CAA is doing more harm than good and wouldn't mind seeing them vanish either. They've already moved into reporting the news rather than making it, (except for McCleary's recent comments on GET & CBT) let them do that so the information is on the website and Facebook.
  7. raven

    raven

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    Does anyone know any of the current board members? http://www.cfids.org/about/board-of-directors.asp Maybe one or more of them would be open to listening to patient representatives and effecting change? Jennifer has stated on blogs she's taking patient concerns back to the board but nothing comes of it.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)

    I contacted Amy Devine who lives in my town of Boulder. She apparently can't meet until April.
  9. leaves

    leaves Senior Member

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    Can't we mass email the board members? Send them petitions etc? Or maybe get them one by one?



    All these board members seem to be marketing people and psychologists btw.. I'm sure they are sweeties but no way that they can evaluate or correct a research plan
  10. Hope123

    Hope123 Senior Member

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    I agree with the point of view that the CAA has not taken opportunities to educate the public/ researchers, etc. as well as they could have. When the CDC personality studies came out last year, when Ryan Baldwin (a child with ME/CFS) was taken away from his parents (his parents were not willing to comply with MD orders re: exercise and accused of neglect), when the PACE studies came out...........the CAA could have issued strong statements to the media or supported the Baldwin's case. Instead, we got no response or a lukewarm response.

    Even throwing out the advocacy stance and just looking at the science, how about those surveys that 1,200 of us filled out in 2009? The CAA communicated some results about symptoms and work status to the patient community but was this information conveyed to researchers/ policymakers, etc.? This data showed that the majority of CAA members had been sick for over 5 years and that a high percentage could not work full/part-time among other things. (If anyone wants, I made a copy of the publicly released data and you can PM me for it.) This is valuable information as very little has been done to characterize the ME/CFS population in the US.

    I did not get a sense the CAA capitalized on this info. Contrast this with the UK groups who release statements and send out more detailed information on every survey they do of their members. That info could be used by scientists to formulate projects, by physicians to diagnose patients, by policymakers to figure out how to finance and organize care for patients. I did write to the CAA, as I did many times before, to consider publicizing this data more but I didn't get a response.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    sure! i tried contacting Ms. Devine because i am really curious what the heck they are thinking.
  12. grant107

    grant107 Jean

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    Ormond Beach, Fl
    I give all my donations now to the WPI. I regret having donated anything to CAA, little as it was. We need to fire the board members if all they do is rubber stamp whatever the leadership wants.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The problem is that we can't fire them, according to Jennie Spotila. The board is self perpetuating; it votes on itself; hence a lot of the problem. It's an undemocratic dictatorship of a board which is in turn somehow under the sway of a svengali of a CEO.
  14. Andrew

    Andrew Senior Member

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    I nominate Mindy Kitei as the new director of CAA.
  15. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    Kim sits on all standing committees including the nominating committee for the board members. The board members are term limited to a maximum six years.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The things we can do:

    (1) ask people to only donate to organizations that help pwME and advance good science such as WPI or OFFER.
    - does anyone know who are the significant donors other than Laura Hillenbrand, the Enchanted Forest Bike race and the state of NC?
    - if anyone knows Laura Hillenbrand, please politely mention the situation including the lack of patient support as evidenced in this poll and one that's even more negative on mecfsforums.com. Definitely don't want to bother her since she is so sick and so busy with her book. Just want to make sure she is aware of how bad CAA is and that there are much better options.

    (2) contact board members. You can email the org and have them pass emails on to the whole board. i suggest trying to talk to a board member one on one if you have a connection or one lives near you.

    (3) we can organize a protest outside their offices. The media would be all over this. That takes more energy and i would try the other options first.

    (4) lawsuit. I don't suggest this at all; waste of resources. Just mention it to make people aware of all the options.
  17. floydguy

    floydguy Senior Member

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    Justin et al,

    Are there any avenues available to pursue who the donors are? This could be a critical factor as to what's going on. Do we know how much of CAA's money is from a handful of "anonymous" donors? However, I still think the critical problem is Kim M and the way she is apparently manipulating the board and everyone else. It's time for a shareholder (ie patient community) revolt on the organization.
  18. raven

    raven

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    I don't know how much of the $859,859 came from donors but they may have a more detailed IRS report if they're asked to provide one via snail mail?

    From the 2009 IRS 990 form (percentage changes reflect 2008 data)

    Statement of revenue 2009
    Breakdown - part VIII, pg. 9

    Membership dues 62,172 (down 48%)
    Government grants (from CDC again pg. 18) 228,380 (down 32%)
    All others 859,859 (down 41%)
    Non-cash contributions 11,569 (down 80%)
    Investment income 5,934 (down 57%)
    Net income from sales of inventory 5,246

    Total Revenue 1,161,591 (down 39%)
  19. raven

    raven

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    Feb 2010 McCleary says,

    "For the past several months, with help from the federal relations firm with which we work closely, B&D Consulting, weve been identifying new sources of federal funds to supplement the fairly meager amounts being spent by NIH and the U.S. Centers for Disease Control & Prevention (CDC) to research CFS. One potential source of medical research funding is the Department of Defense." http://www.cfids.org/cfidslink/2010/020301.asp

    Looks like were able to get some funding from DOD in this Oct. '10 webinar, don't know if they qualify as a significant donor? http://www.cfids.org/webinar/slides-100510.pdf

    Giving back to the patient community (under Gordon Broderick's study)

    Fueling longer term research: $4.5 M (USD) leveraged by donor funds
    - US Department of Defense ($750k over 2 years)
    - NIH R01 ($3M over 4 years)
    - US Department of Defense ($750k over 3 years)
  20. WillowJ

    WillowJ Senior Member

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    I am going to write to WSJ's health blogs and ask them to talk to Dr. Lenny Jason, Mindy Kitei, and Mary Schweitzer instead of CAA. I think we should recommend someone else instead of just saying "don't talk to CAA; they don't speak for us."

    Any additional input on who we would like for spokespeople? Who all do we all like? Peterson? Komaroff? Lerner? Stevens? the Lights? VanK?

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