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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. SOC

    SOC Moderator and Senior Member

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    This could work if we had a clear set of goals stated at the website so that participation was a buy in or don't come arrangement. Otherwise we will be forever arguing about, for example, who gets to call what set of symptoms ME. :rolleyes: IMO, these kinds of arguments are seriously fracturing our voice, so as SpecialK82 said, we would have to find a message/position for this proposed website that won't include arguing. I'm not sure we can achieve that.

    But if we don't find that message/position that 80% of us agree with, the proposed website will just be anothaer one of many ME/CFS advocacy sites.

    Perhaps we can start a new thread proposing some platform points, discuss it for a month or so and then put it up as a poll to see if we have at least 80% agreement here. Maybe after that we could run it by the main advocacy groups to see if we can get 80% agreement.

    Does anybody want to start with a couple of issue positions that most of us will probably agree to?
    Bob, WillowJ, SpecialK82 and 2 others like this.
  2. SpecialK82

    SpecialK82 Senior Member

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    Yes SOC, you make some good points, it is tricky to find that 80%, but I'm hoping that it's possible. I would be interested in forming a group just to look at these issues. As I understand from Hope123 on another thread, Mary Dimmock and Bob Miller are working along these same lines so it would make sense for us to all hook up and discuss.

    The idea might have to be broken into two distinct pieces:

    First, I think it's crucial just to have a website (or some other vehicle) where absolutely everyone is connected. It can be as an individual or through a group. This website would be only to disseminate highly important information to the community and to highlight areas that need community involvement. I would actually like our working group to call (contact) each and every support group/forum/website of which we are aware, and ask if they would like to be connected. The goal is only to get each and every person connected so that we can mobilize the community quickly when necessary. We would probably need to come up with a few basic principles for which we stand. This could be the end of the project, which I think by itself is a great step forward.


    Or, we can go on to a second phase which would include action from groups that want to work on advocacy, writing petitions, etc. (and agree to stay within that 80%). These petitions could be posted on the website. I know this hairy, and may not work.

    Another way we could do it - any group can write whatever petition they choose, it will then be posted on the website, so that everyone will be able to view the petition. Whoever agrees with it can sign it. That may be the better way - the website itself is completely neutral, it is only a mechanism to disseminate information.
    SOC, alex3619, leela and 2 others like this.
  3. Nielk

    Nielk

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    This sounds like a central repository independent of any organization? It sounds great! It could be called ME/CFS Central.
    SpecialK82 and madietodd like this.
  4. madietodd

    madietodd Senior Member

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    My vision is of a completely neutral site. One that is equally attractive to patients, doctors, government officials, and family members/carers, because it's information-rich but unbiased.

    For example, re ME (and also CFS) definitions: All of the recognized (argued about) definitions would be there, maybe in age-order. So from the home page you click on "definitions" and you see a page with a nice big graphic for each definition, and you could click on one. Also, there is a choice to go directly to "further discussion," and that's where you find links to outside articles and sites that argue and discuss.

    Same with fundraising petitions, current studies, government funding by country.......any content that is purely informational could just be posted. Then links to outside organizations would be at the end of these pages, and that's where people would find each other.
    SOC and leela like this.
  5. leela

    leela Slow But Hopeful

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    I am loving all the solution-oriented thinking that's going on here!
    :thumbsup:
  6. Andrew

    Andrew Senior Member

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    Here's how I see it. When I decided to testify this time, I checked the CDC website fully expecting that the toolkit would still be there. I didn't expect that they would hide their justification for GET, but was not all that surprised see them do this. Their handling of CFS is completely unprofessional, and probably driven a long-standing behind-the-scenes culture that treats CFS patients with disdain and ridicule. I believe the only reason they put in an effort at all is because they are mandated to. And I think their willingness to bias the coverage of research is an indication of this. For whatever reasons, the DHHS turns a blind eye to this. I think the CDC has got the DHHS bamboozled. They know how to play the politics. If you read Osler's Web, you can see how they played Congress and others.

    The CFSAC has almost no power, except to get the DHHS to listen to their recommendations. The only other power they have is to agitate, which they have begun to do. So I think it is a big mistake to pin your hopes on the CFSAC, and expect them to transform how things are done. But I still see value. For example, we can write to Congress, etc. and say that the DHHS is ignoring the CFSAC recommendation to remove the toolkit. We can say they are ignoring the recommendation to set up centers of excellence. We can say that they ignore almost every recommendation of their own advisory board. This makes it much easier for us to make our case, IF we are willing to utilize this fact as part of our advocacy.

    And so the reason I decided to testify was to give them more ammo to agitate regarding the CDC. Also, many patients and others watch this. And I think many people don't know that the Tahoe cluster defines CFS, and that they have ME. It is not some vague fatigue illness that can be redefined without regard for the actual symptoms found in the defining cluster.
    Bob, GhostGum, SOC and 4 others like this.
  7. alex3619

    alex3619 Senior Member

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    Hi Hope123, For all that we have not succeeded in getting recognition for ME, or finding a cure, or getting better treatment widely adopted, things have never had a better outlook. More and more advocates are stepping forward, we have advocacy organizations with a lot more experience than before, we have not one but two treatment primers, and we have very promising medical research including Rituximab. Furthermore the testimony of many patients is now on public record, there is a legacy there that will have an impact generations from now, particularly when historians look back and wonder how things got so fubar.

    This is not the time to give up our efforts. Its the time to increase our efforts. With numbers of advocates low, and most of us with ill health, we need to work smarter not harder. We are slowly learning how to do that. We will have to create the field of paced advocacy, something that has not been needed in other diseases.

    If the CCC gets officially supported in the USA then its going to have a huge impact. If Rituximab has a very successful phase 3 clinical trial, then advocacy will totally change. Psychobabble will be under full scale attack, and have to retreat: their claims will be up against extraordinary contrary evidence. Even if these things do not happen, the changes in internet advocacy may increase and accelerate advocacy impact - I can easily remember advocacy without the internet. It was so much harder.

    So I agree, Hope123, this is not a time to be despondent.This is a marathon and not a sprint, and on those occasions where we take one step back, we just have to make sure we follow with two steps forward.

    Bye, Alex
    Bob, SOC, WillowJ and 1 other person like this.
  8. alex3619

    alex3619 Senior Member

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    Hi Madie, I support this idea with reservations, I am working up to proposing somethign along these lines in my blogs. This has to happen if we want to take advocacy to a whole new level. Its been time to discuss somethign like this for many months, and I am pleased I am not the only one thinking along these lines. We railroad when its time to railroad. Bye, Alex
  9. alex3619

    alex3619 Senior Member

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    This is the insidious invasion of consensus science. There is another name for that. Politics. As science becomes more political, the very things that make science valuable begin to unravel. I regard this as part of the Zombie Science movement - people want to shift scientific outcomes and they use money and influence and pursuasive rhetoric to shift things, not evidence and reason. Its the Age of Spin.

    I think we have to rigorously defend against any move to develop consensus definition using large number of people whose expertise with respect to ME and CFS is limited. I wonder if we could create something like a statement of "No confidence" from a coalition of advocates and advocacy groups?

    Having said that I have argued elsewhere that research like the CDC move to investigate a new CFS definition is possible if adequately funded and planned, despite its vagueness. Its just that I do not have confidence they can do it right. There is no way to do this properly without combining it with an exhaustive search for biomarkers, or at least examining every putative biomarker we have from just about every study. Yet I doubt this will be done.

    Bye, Alex
    SOC likes this.
  10. alex3619

    alex3619 Senior Member

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    Hi SpecialK82, I agree with these ideas with reservations. However I suspect they are not big enough. I think we can do far more than this - not at once, but slowly over time. I think we should be looking at getting global advocacy moving, but designing it in such a way that it will enable advocacy to expand and develop. Stay tuned, I have things to say on this later. Bye, Alex
    SpecialK82 likes this.
  11. mfairma

    mfairma

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    When I wrote that I would not give my energy to CFSAC, I did not mean I would stop trying to advocate. I meant, as Alex said, work smarter. I have limited energy and don't believe that Cfsac is the best use of that energy.

    After every meeting or big event, I see a lot of good intentions and grand visions on this forum, which I would love to see move forward, but which I think are unrealistic given the scope of the ideas. And after a few weeks, the energy seems to die down, though perhaps that is just what I see, rather than what is.

    I think a more realistic scenario would be for each person to identify their own skill set and then work with existing advocates to contribute their unique skills. I am an effective writer. For me, that means finding a project that can benefit from my abilities in communication. If anyone else has skills in video editing or documentary film making, we could use better educational videos that exude credibility and sell our illness. If anyone is well enough or near enough to big cities, consider contacting Rivka to plan protests. There are innumerable projects out there that could use volunteers, but they often require unique skill sets.

    I would love to see the energy and intellect and knowledge in these forums being put to advocacy, but i'm not sure I see that. Again, perhaps I an just wrongly assuming that what I see on the forum is representative. I don't mean to criticize, because I know that some may be sicker than I and that many more are not as well supported (which is definitely a key factor in being able to spend energy on something as unpleasant as trying to fix this mess) and that others are not sure where to start. There are a great group of advocates out there already, though. I would love to see more advocates join them as any group can be enriched by the addition of new perspectives and skill sets.
    CJB and SpecialK82 like this.
  12. Dolphin

    Dolphin Senior Member

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    I've only skimming down the comments so not sure if it was explicitly stated before, but this would suggest a database of people, their interests, skills and locations/where they could work could be useful.
    SpecialK82 likes this.
  13. mfairma

    mfairma

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    I don't know if even a database is needed. There is a pretty good core of advocates already. I think people should just think through their interests and skills and contact people working on that sort of thing. For example, we could use a lot more information on how cfsac and gov employees view this situation. Pat Fero and Jennie Spotila have worked with FOIA a number of times already, and although I have not done any for advocacy, I processed FOIAs at the FTC before I was forced to leave. People with legal experience interested in FOIAs coulda contact either of the above two and brainstorm on the type of information needed. My point is that I think a more ad hoc system of organization might be preferable given our limitations. Advocates working directly with each other seems to have produced success lately. As things grow, roles will probably need to develop, so things don't become unwieldy, but I see no reason why that should not develop organically, as opposed to being decided right now.
    Bob, SpecialK82 and alex3619 like this.
  14. WillowJ

    WillowJ Senior Member

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    I did not think of that - thanks :D
    Dolphin likes this.
  15. WillowJ

    WillowJ Senior Member

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    Right, they don't vote. But Unger talks a little (and passionately), and when Maier talks everyone takes it as The Final Word from NIH.

    I am not certain how Ann Vincet voted; I think she may have been off camera. She does not talk a lot, but when she does she doesn't necessarily say what I would expect to hear from CDC and Mayo Clinic. I can't think who the other CDC nominee is atm.
  16. Dolphin

    Dolphin Senior Member

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    Thanks for that.

    Dr. Lisa Corbin.
  17. WillowJ

    WillowJ Senior Member

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    the integrative medicine doctor? interesting. I haven't learned to recognize her face or voice yet (the camera doesn't show the name cards often enough to be useful, especially to someone who is also taking notes and no longer good at multi-tasking). Can't tell you anything about her, sorry.

    also, I watched (very rough estimates) only about 40% of the meetings this time, about 70% last time, and I don't remember how much the time before; maybe 40% would be a good estimate then, too. Prior to that I had poor internet connection and got only bits and pieces. So I could have missed a lot.
    Dolphin likes this.
  18. Dolphin

    Dolphin Senior Member

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    Thanks.
    This has a photo for anyone interested: http://www.uch.edu/doctor-profile/?id=388
    WillowJ likes this.
  19. SpecialK82

    SpecialK82 Senior Member

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    Agree. I would like to join the advocacy groups out there. I think we have to go over everything from this CFSAC meeting, maybe wait for the video to come out, to watch some pieces again, and then strategically creat an action plan for the next CFSAC meeting. We need a game plan for each agency. What can we do (and with which agencies can we meet) before the next CFSAC.
  20. Sing

    Sing Senior Member

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    There is such irony in how we with cognitive dysfunction and memory issues have to be the ones to analyze, correct and propose to those who are supposed to be fully capable, competent and knowledgable. The doctors, bureaucrats and scientists have functioned as if they were more handicapped than we are, but then they use their real abilities and powers to try to knock us down. I am tired of this!
    alex3619, SOC, BEG and 1 other person like this.

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