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Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
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Suggestions for change at the CAA? Post here.

Discussion in 'General ME/CFS News' started by mvwu, Dec 14, 2009.

  1. mvwu

    mvwu Guest

    On the "Time for the Big Talk" thread, Jennifer Spotila and I had the following exchange:

    I am encouraged by Jennifer's responsiveness to my suggestion. Please feel free to post your own. As she said, she is sick now, so we should keep our expectations for replies in line with the knowledge she is ill. We can also hope that Adam Lesser, the new chair for 2010, follows her example and is also willing to engage in a dialogue with us.
  2. fresh_eyes

    fresh_eyes happy to be here

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    Nice work, mvwu. My main suggestion would be to create some infrastructure to make this kind of two-way communication between patients and the CAA easier and more effective in the future. We shouldn't have to improvise like this every time. (Perhaps creating a community liaison position?)
  3. fresh_eyes

    fresh_eyes happy to be here

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  4. starryeyes

    starryeyes Senior Member

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    This is just what we need. Thank you jspotila for wanting to help us communicate with the CAA. I'm sorry to hear you are so low-functioning and sick. I can relate. Whatever you can do will be wonderful and I really am glad you're here. :)

    Levi's thread is amazing! I liked the joke too. ;)

    tee
  5. fresh_eyes

    fresh_eyes happy to be here

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  6. Change suggestions

    After observing things for a long time, here are some ideas for improvement:

    Communicate with more candor:

    In the past the leadership of the CFIDS Association has tended to only focus on it's successes without openly discussing strategies that were not working. For example in the late nineties / early 2000's it was already obvious that NIH funding levels for CFIDS research were stagnant. Yet the association leadership still talked about what wonderful progress it was making getting the government to fund CFS research better.

    Become less insular:

    It seems to me that the board and the leadership have been too disinclined to fully participate in the too and fro of patient discussions. Ideas are out there if you are willing to listen. Based on personal experience the leadership has tended to be dismissive of patient inputs in the past.

    Openly measure yourself continuously and quantitatively over long time frames:

    How about stating long term goals that can be measured. I.E. we wish to increase NIH funding by this amount over time. Then place a spreadsheet on your website that is updated yearly that tracks NIH funding levels after adjusting for their categorization games. This is an area where the CFIDS Association needs a lot of work.

    Publish financial records that are easy to understand:

    Since 2007 the Association has stopped publishing accounting information in an easy to understand format. Considering how often the CFIDS Association notes the cognitive limitations of it's stakeholders, it does not take the time to inform it's stakeholders about what is going on quantitatively in an easy to understand format.

    If you are a board member familiarize yourself with past history:

    Why did Mark Iverson step down in 2001?
    Why did several board members suddenly step down en mass several years ago?
    What conclusions should you draw from these episodes?
    There is a context to the dissatisfaction - but you will only figure it out with the above history in mind.
  7. Another Idea

    How about providing a way for the public to directly interact with board members without any filtering by the CFIDS Association leadership?
  8. Cort

    Cort Phoenix Rising Founder

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    I think WildDaisy and Slovokia had great ideas. Here are mine from another post:

    • Communicate, communicate, communicate - be a presence on the Forums
    • Be more provocative in your advocacy efforts. Cast aside some of the professional veneer and be more inflammatory
    • Talk about the negative stuff more; for instance, keep the community aware of NIH and CDC funding levels. Explain what you are trying to do to remedy that even if its not working. The CFS community sense's something is terribly wrong at the federal approach to CFS but they get a disconnect regarding that with the CAA. This is why so many people are upset at the CAA's 'tooting their horn". Communicate the difficulties at increasing federal funding levels; make patients more of a partner in this regard. Candor as slovakia pointed out is VERY important.
    • Respond to inaccurate postings as quickly as possible; basically defend yourself instead of staying above the fray. Don't let rumors take hold and turn into concrete. Explain why you are doing what you are doing very clearly. Be very transparent.
    • Create a series of position papers on just where you stand on hot button topics.
    • Keep the focus on the Research and in particular build the Research Network you're engaged in.
    • Get more interactive on the web; build your own social network - become a place where CFS patients want to go to interact about CFS.
    • Create physician and treatment review sections
    • After digging into the CDC for the last year and a half start digging into the NIH
    • Keep looking for more opportunities like building the Physician Education program
    • If its within your means to build or help build a national network of groups do so.

    All of this would be great and honestly I'll bet they would love to do most of it. The question, of course, is resources.
  9. shrewsbury

    shrewsbury member

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    And I would expand on Koan's idea of having a registry of the 35,000 doctors the CAA has trained.

    Also, could add any doctors who treat ME/CFS.

    The more info on each doctor, the better - specialty, protocols favoured, costs, a "review" section, contact info....

    Info in some type of database so people could have the option of searching for doctors in their area.

    islandfinn:)
  10. jspotila

    jspotila Senior Member

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    These are all helpful comments and suggestions. I am keeping a running list, and will look at the other two threads linked here as well. I know I won't be able to keep up with everything on the Phoenix forums, so it will be helpful if anyone wants to link something in to be sure we see it.
  11. Khalyal

    Khalyal Guest

    Thank you Jennie

    Thanks for listening, thanks for taking the time to gather our concerns, thanks for responding!
  12. jspotila

    jspotila Senior Member

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    Clarification?

    Is your suggestion that there be a way to write in, or that there be a FAQ? Or were you thinking of a forum similar to this, where submitted questions would be public? Thanks!
  13. Marylib

    Marylib Senior Member

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    Thanks to Jennie and Kahlyal

    You both deserve thanks. Jennie for listening and Khayal for stirring up the pot without personal accusations or pettiness. You are both so well appreciated.
  14. Another Suggestion

    How about making policy choices in a more democratic way?

    Right now it appears that the CEO makes most of the policy choices while the board sets overall goals. Is this the only way things can be done? Why can't the board influence policy choices more, with input from the patient community?

    This issue is all the more important considering the CEO has been in their role 18 years while the board has had constant infusions of new people with new ideas. When we have to rely mostly on one person responding to change don't we slow things down? There is a reason that democracies limit time in office of elected officials.
  15. jspotila

    jspotila Senior Member

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    The Association follows non-profit governance best practices in the way the Board and CEO make decisions. I had no idea when I joined the Board that there even was such a thing as governance best practices, but it's a huge and well developed field. Here's how the Association's website describes the Board/CEO roles in setting policy and strategy.

    "The CFIDS Association of America is governed by an elected Board of Directors comprised of dedicated men and women who volunteer their time, knowledge and breadth of experience to help forward the campaign to conquer CFS. Since the Association was founded in 1987, 83 people have enriched the organization through their service on the board.

    Association policy is set by the Board, which includes persons with CFS (PWCs), family members of PWCs, and professionals, all of whom understand the needs of PWCs and are in regular and frequent contact with the patient community. Members of the Board and professional staff also rely on the counsel of members of various advisory committees, standing committees and task forces when making policy decisions.

    The President/CEO leads the Associations staff in implementing Board policy and carrying out strategic and operating plans adopted by the Board. The President/CEO is responsible to and reports to the Board."

    From the Association's website: http://cfids.org/about/leadership.asp
  16. Policy choice detail

    While the board may indeed set policy choices at a broad level, what I am concerned with is more detailed policy choices / implementation choices. Can these be made more democratically?
  17. starryeyes

    starryeyes Senior Member

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    2 things the CAA could change right now:

    1 - Change their brochures. Delete the notion that CBT and GET help patients with CFS. Don't even mention it. The brochures should state the seriousness of CFS, they don't have to mention XMRV yet. And the brochures should be advertised, they are free right? Get the word out that we can order as many as we need. Make them very easy to read with a nice little picture on top. One pagers would be awesome. I just want something to be able to hand to strangers on the street and to the cops that try to arrest me for parking in a Handicap Zone and I know I'm not alone on this.

    2- Start a massive campaign to educate doctors, nurses, dentists and EMTs. One of the most important things to emphasize is that we cannot usually handle any Epinephrine in our anesthetic and we need special anesthetics for surgery.

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