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"Intimidated, Frightened, Threatened with Eviction" - CFSAC Spring 2013, Day Two

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 14, 2013.

  1. JayS

    JayS

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    Not quite the same, but there are issues that we hear about such as what happened to Ryan Baldwin a few years ago, which was outrageous.
     
    Valentijn likes this.
  2. Sasha

    Sasha Fine, thank you

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    Everything you say here sounds great. I've been appalled at seeing committee members asking the most basic of catch-up questions at this meeting that suggest that they haven't even bothered reading their documents on the plane. And why they were all sitting through a lecture on the US insurance system when that could have been a circulated paper and discussion time for ME-specific issues is precious, is beyond me.

    How can we get your suggestions implemented, SOC? I wish you could run that committee!
     
  3. SOC

    SOC Moderator and Senior Member

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    I have the occasional insane moment where I wish that, too. :rofl: Of course, proper committee management is the responsibility of the head of the committee, not measly little patient members.

    There are two possibilities for we patients to try to improve the way the committee is run, neither of which I see actually working in reality. One is to insist that the DHHS put someone from their offices in charge of the committee who has professional experience running national/international level professional meetings. Hah. Another is to outline how we see this committee should be run in painful detail and submit that to the committee itself with intense emphasis -- rather like we finally got through to them about the seriousness of the illness. That would require that we work together to create a format we agree upon (not likely) and that we push the subject strongly at the next several meetings.

    I don't see an easy way out of this without the DHHS taking the issue a whole lot more seriously than it currently does. The DHHS has to care that valuable forward movement occurs before it's likely to do something about the management of the committee.

    Desire to properly manage the committee has to come from the head of the committee. Who is the head of the committee these days? I've given up (in frustration) paying attention anymore.:rolleyes:

    PS: I am not suggesting that the government-assigned members of the committee don't care in the moment about ME/CFS. Whether it is important enough to them on a day-to-day level to insist on substantive change involving more work for them is the question.
     
    Sasha likes this.
  4. Sasha

    Sasha Fine, thank you

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    I wonder if we could request maybe the two or three main things that would make the biggest difference rather than aim for perfection, and push hard for those? Maybe in consultation with people like Steve Kra.. Kra... ah, o_O and Mary Anne Fletcher who might get behind them?
     
  5. SOC

    SOC Moderator and Senior Member

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    I would expect those two to be behind it. They seem as frustrated with the inefficient way the committee works as I am. ;)

    It might be possible to suggest specific subcommittees with specific tasks and reporting schedules. Another thing to point out is that subcommittees don't need to be made up only of people on the main committee. Each subcommittee needs a main committee person as head. The remainder of the committee can be made up of other main committee members and other interested parties. In our case, other interested parties would probably be volunteers designated by patient groups and the government agencies.

    In serious national level committees, being on the main voting committee (or board) is an honor earned by years of good service on the subcommittees. The beauty of working subcommittees is that people are expected to put up or shut up. If a topic is important to you, get on the subcommittee and hash it out during the year. If it's not important enough to you for you to make that commitment, you are in no position to bicker about the topic at the last moment.

    This kind of thing mitigates against the kind of CDC foot-dragging (and occasional outright obstructionism) we've seen in the past. If the CDC wants a major input on a particular topic (say, a name-change recommendation) then they need to assign someone to work on the subcommittee and interface with the CDC during the year to achieve a suitable compromise. The subcommittee then presents a clean, well thought through, already vetted proposal for the main committee to vote on whether to send forward to the DHHS as a recommendation. The main committee votes yes or no, and doesn't waste time piddling around asking obvious questions and speculating whether their boss agency might not agree. We don't end up with recommendations with no official support from the associated agencies. The committee would be providing the DHHS with a clean, implementable recommendation that doesn't need work on Secretary Sibelius' part to figure out if her agencies are willing to even consider.

    However, everything we suggest to improve committee management will be wasted if the head of the committee doesn't hold the members to the plan. A committee head who can't tightly manage the time or say, "The is not the time to bring up that point. If you wanted that detail addressed, you should have worked on the subcommittee" ruins efficient running of the committee.

    All the yickety-yack that goes on during the CFSAC meeting is a huge waste of time. The time to air everybody's thoughts on a subject is during phone/skype/email subcommittee discussions, not during the tightly time-limited face-to-face committee meeting.

    If the head of the committee isn't willing to take charge and shut up people who are bogging down the main meeting with subcommittee business, then the meeting devolves into a social event rather than a productive meeting. Believe me, I've seen it happen -- a formerly productive committee gets a head who wants to "let everyone have their say" at the voting meeting. Suddenly nothing gets done. Every important topic has to be tabled "for further discussion" because full understanding and agreement cannot be achieved in the short amount of time available for the voting meeting. "I'll have to consult my agency" can shut down a decision on a topic for another 6 months to a year if the committee head can't say, "You should have made sure your agency was involved in the subcommittee. This has to go to vote at this time. Vote against it it you must, but make sure your agency is better prepared next time".

    End of Rant 2
     
    Sasha likes this.
  6. Nielk

    Nielk

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    Yes, you are so right. That was unspeakable!
     
  7. Sasha

    Sasha Fine, thank you

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    Then one of the major proposals needs to be about that and I can see people like Steve and Mary Ann both proposing that and bringing it up if it's not being held to at a meeting.

    This needs to be done!
     
  8. SOC

    SOC Moderator and Senior Member

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    Good point. If there is sufficient patient will to try to make this happen, I can frame the idea much more diplomatically than I have here. ;) Then someone with more political smarts than me can wrangle it into a suitable form for presentation to... whoever it would have to be proposed to. o_O
     
  9. Mark

    Mark Acting CEO

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    I think the posts above have are spot on and focusing on some key priorities, and I'd love to see interested forum members drafting letters, suggestions and recommendations like this, which could be submitted either independently or as approved proposals from Phoenix Rising (we could vote to approve them, or set up petitions to indicate approval, etc). This is really the idea of the 'Advocacy Team' we want to set up: to lead forum discussions about what we should be focusing on and what we should be saying, and to take a lead in drafting letters/documents on key issues that forum members and the board could then approve and get behind.

    So I'd be interested in any thoughts anyone has on how we should set this up, how it should work, and how Phoenix Rising can support that process, and I encourage those of you who've posted above to think about that and (if you think this is a good way to do it) to set up threads to work on these letters. I guess one starting point would be to list and prioritize the key issues we would want to bring to CFSAC's attention, and then discuss in each case what would be the main points and recommendations we would want to emphasize for each issue.
     
    snowathlete, Valentijn and Sasha like this.
  10. Sasha

    Sasha Fine, thank you

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    Hey, your head's rolling about alarmingly, SOC! Use a stabliser, like this one: :ill:

    I think there's no doubt right now that the will of the patients is to have that committee get its [insert appropriate colloquialism here] and start being both efficient and effective.

    Jennie Spotila - hi jspotila! - is good at that stuff. I think she's having a bit of a rest at the moment, though. I'm politically clueless and don't have the faintest how to make a thing like this happen - we need your expertise in this process plus somebody with the political angle...
     
    Valentijn likes this.
  11. Sasha

    Sasha Fine, thank you

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    I don't know if everyone is aware that it's possible to set up a private subforum to work on things like this if you feel it's not appropriate to do it in public (which you might or might not - just wanted to mention it).
     
  12. SOC

    SOC Moderator and Senior Member

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    Indeed it is! I definitely need: :ill:

    Funny, the same name crossed my mind. :D
     
    Sasha likes this.
  13. SOC

    SOC Moderator and Senior Member

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    My brain just exploded :alien:, but after it's had a bit of a rest I'll give some more thought to the whole issue.
     
    Sasha likes this.
  14. Sasha

    Sasha Fine, thank you

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    You definitely get today's prize for most creative use of smilies! :balloons:
     
    SOC likes this.
  15. LisaGoddard

    LisaGoddard Senior Member

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    Anyone know what dosage of prednisone Lisa Corbin recommends?
     
  16. jspotila

    jspotila Senior Member

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    Well Hi There! My ears were burning!!! :redface:

    Some of what has been discussed in this thread has already been attempted. I'm not sure what the best way is to bring people up to speed on what we have tried, and figure out what to do next. Some of that work is ongoing (by me and others). I think it might be best done by email or in the subforum until actions are ready for prime time with the full group. But I would hate to see PR duplicate efforts of other advocates. I have invested unbelievable hours in CFSAC related efforts, and it would be a waste for others to duplicate, rather than forging ahead.

    Who might be interested in working on this? Sasha and SOC?? Anyone else?
     
    SOC likes this.
  17. Nielk

    Nielk

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    I would be.
     
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  18. Sasha

    Sasha Fine, thank you

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    Hi Jennie! It would be great to have people working with you on this. I've got other projects on at the moment and this one doesn't play to my strengths so I'd better say no but I hope at least SOC will add her expertise and I see there's Neilk... :thumbsup:
     
  19. Nielk

    Nielk

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    I just saw this letter posted on Facebook from 12 organizations and 23 advocates requesting that the general counsel of DHHS investigate allegations of intimidations at the last CFSAC.
     
    SOC likes this.
  20. Sasha

    Sasha Fine, thank you

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    Great letter! I hope that gets some action.
     

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