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Congressional Oversight Hearing ASAP &

Discussion in 'Action Alerts and Advocacy' started by Roy S, Oct 7, 2009.

  1. Mark

    Mark Acting CEO

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    Roy, I don't claim to know anything about the history of the CAA but I do agree with everything you are saying about aggressive campaigning, a direct action approach, and what Peggy Munson is saying in her blog about the need to demand recognition and respect. Die-ins, demos, rallies, whatever - I'm there.

    I also agree that the CAA, like the MEA in the UK, are often personally frustrating to me: these large 'mainstream' organisations are much more conservative and cautious in their public stance than I would like, and I think they have failed to put us on the map and to represent the immense anger and frustration that the patient community feels.

    In my experience this is virtually always the case with large and well-established campaigning or charity organisations once they have "gone mainstream" and established connections within bodies of authority. This pattern is not at all unique to ME/CFS, it is perfectly natural and in the nature of politics that organisations make compromises, and become compromised, as they work to try to influence the people and organisations against which they are campaigning. For people operating at a pragmatic level, the caution they need to exercise in order to gain the broad public respect necessary to achieve small but tangible results always blunts the radical edge and causes frustration to those who want to speak out simply and plainly.

    One can think of it like this. Systematically: one can make a very strong statement which will be heard by very few people, or a very weak statement which will be heard by many people. The impact of the statement can perhaps be crudely represented as the product of the strength of the statement and the number of people who hear it and take it seriously. Whichever way you slice it, you quite likely end up in the same place. If you speak out strongly and tell the whole, awful truth, people aren't ready for it, and they dismiss you - now and forever: you lose public respect. If you make a weaker statement, many more people might take seriously what you have to say, but that comes at the price of not being able to say very much.

    One example of this dynamic is that, after years of caution, Dr Vernon recently accused the CDC study of being 'designed not to detect XMRV'. That's an extremely strong allegation to make - albeit almost certainly true and indeed only a small part of the picture - but I'm sure that this comment had more impact politically than it would if Dr Vernon were always saying things like that; conversely, the act of making such a statement does have a personal cost in terms of credibility as well.

    Another recent example from the UK: The ME Association has recently succeeded in getting the UK to impose a long-overdue blood donation ban, getting national news coverage about the ban, and contradicting the official line that this is 'for our protection', emphasising that this is clearly because of the fears over XMRV. The rest of the more radical UK ME/CFS organisations have been campaigning too, we have been writing to the UK press, trying to cultivate relationships with journalists, trying to get the word out about the Alter/Lo study (which hasn't been reported here), trying to get ME/CFS and XMRV into the news. And we have failed, where the MEA has succeeded.

    That ought to sum up where organisations like the CAA and MEA inevitably sit within the political spectrum. There is nothing whatsoever new about this situation, it is just politics. Politics is the art of compromise. It's unpleasant, and arguably ultimately dishonest, therefore, but if you want to really change things and make a difference, sometimes you have to do what's necessary in order to get a seat at the table.

    It's not my natural way at all. I can't understand conservatives, cautious people; I don't know how they can exercise the restraint and caution that they do, but that doesn't mean I don't respect them. Their way is not my way, but I do know at least that they are sincere and that they do have a positive impact with their approach, however small and frustrating that impact may be. Even in my own life I have learned that toning down my message and the way I express it makes it far more likely that people will listen to what I have to say; the effect can be quite dramatic actually.

    So my conclusion really is this: if we want to see a radical voice, then that voice has to be, as it always is, an authentic, independent, constantly renewing grassroots voice. Every new campaign that rises up and takes an aggressive stance, will in time evolve into a more established body that is regarded with scorn by the next generation of activists. That is the process of perpetual change. And so the things that we are all talking about now - in many threads here recently - need to happen outside of the established organisations, and they will coalesce into a new movement that will influence the CAA (and probably already is doing so), and that movement will grow, just as we want it to, until it starts to have a powerful influence...and then, as it does so, its voice will in turn gradually become muted and, like the CAA, and like Phoenix Rising, there will come a time when it too comes to be regarded with scorn by an even more radical new generation of activists. If we are still here and fighting in another 20 years time (and I sincerely hope we won't have to be), maybe Pandora will be seen as the new voice of conservatism. But if so, then a new wave will always arise to challenge it.

    This is all partly to try to put things in perspective, and partly to try to say to you and other former members of the CAA that you shouldn't feel downhearted or betrayed by the process or the history of the CAA, nor to feel any of that history as a personal failure, a defeat, but rather as part of a universal political pattern. And it's also a plea to disaffected activists to recognise one thing at least, that those more conservative voices in the movement are sincere, and they are on our side, even if they have a completely different approach than the one we personally want to see.

    I have read everything you have written with interest Roy, but there have been just two snippets, which have been highlighted by others, that do cross a line for me, and that is where you criticise Cort personally as a bully, and talk about him fracturing the online community. Two comments which come very, very close to completely destroying your credibility in my eyes. I am quite sure that many have written off everything you have to say and hit the "Ignore" button on the strength of those two sentences alone. And if you persist in such unfair character attacks on Cort, then likely you will indeed eventually be banned from PR for that, regardless of your pedigree. I have said it before: Cort, like any other member, should be entitled to the protection from personal attacks that the forum rules provide to all members.

    I want to see appropriate, direct, radical activism organised, discussed and advertised on this site. I have never seen any attempt whatsoever to oppress such discussions, in fact quite the reverse, I have seen enormous efforts here to allow a place for those voices. The line is quite clearly drawn: the forum rules do not allow for attacks on individuals, and I am not going to get drawn into an argument over whether Cort is a 'bully' (other than to say that that is a ridiculous allegation that does you no credit, and arguably a bullying behaviour in itself), I'm just going to say that the precedent is there that such behaviour is not tolerated here against anyone, including Cort.

    Practical proposals please. Specific calls to action. Congressional Oversight Hearing: I agree. Work at this political level should be a very high priority.

    I have a proposal for the UK, then. I want to know why there is not a well-publicised annual rally/lobby/sit-in at parliament on May 12th (World ME Awareness Day) every year. My biggest question to the MEA would be: Why do you not organise such an event and give sufferers and their carers, family and supporters a means to express their anger? I think we need such a focus to exhert political pressure on those who have silenced us. I do want to see us all gathering in London regularly. May is 7 months away, we have time to organise something significant. We can put pressure on the MEA to support or to at least publicise such an event. Anybody else can publicise lobbies, demos or sit-ins here, so why have I (almost) never seen any such attempts? We could even have a constant vigil outside Wessely's psych centre in London, or the Science Media Centre. Check out "The Love Police" to learn more about your rights to stand on the streets of London with a megaphone and use sarcasm to tell it like it is...

    Anybody can do these things. Anybody can organise and publicise them here. Nobody is stopping that. So rather than complaining about what other people are doing, the far better approach is to re-create something better yourself. It is possible to keep the message creative, positive, radical, dynamic, without needing to attack those who take a different approach: so please, let's all get together around something constructive and leave out the bashing of other activists - that gets us absolutely nowhere.
    Sasha likes this.
  2. Mark

    Mark Acting CEO

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    Shorter answer: I agree, probably both. Both with the MEA and with the CAA, opting out of the organisation and ditching your membership guarantees you don't have a voice in it any longer. Staying and arguing your case gives you a chance to have some influence. At the same time, nobody should expect that their minority voice has a right to drive out a majority opinion, and shouting louder and louder should make no difference to that democractic principle. I think you stay, you fight your cause, and you have to live with the frustration that you don't always get your way, but just hope that you move the debate slightly, ever so slightly, in your favour - more so at least than if you don't have a voice at all. And at the same time, if there are enough of you, you form another group too, that can act more in accordance with the way you want things to work.

    What you try not to get sucked into, is this sort of thing...

    http://www.youtube.com/watch?v=gb_qHP7VaZE
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    Kim McCleary recently wrote that she's trying to get a congressional hearing. Not for us. For the women's pain group that she's spending time on. How many people have brought up the subject of a congressional hearing to investigate the federal government response into ME/CFS?

    The midterm elections aren't looking good for us. Sen. Harry Reid is behind in the polls.

    20 years of Kim McCleary.
  4. Cort

    Cort Phoenix Rising Founder

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    Roy, I understand that you are frustrated with Kim's leadership but until you can get the Board of the CAA to vote her out I think you're engaged in an impossible task.

    I think Mark was pretty much right on is take on how organizations tend to evolve. I loved what Robert, Rivka and Charlotte did with the TIme For Action campaign - it was a jolt of new energy and new ideas. On the other hand I didn't have any problem with Kim's "inside voices' message either; she did, after all, point to several accomplishments that could help us and anything that can help us is precious.

    I support both groups and both groups need our support.

    I imagine that Kim is trying to get the Women's Pain Group a congressional hearing because she can; ie its perhaps possible to get that group (representing 50 million women) a hearing - while doing so for ME/CFS would be far more difficult, if impossible at this point. Of course she would, as the head of a CFS support group, rather have a hearing on CFS :).

    Its a friggin shame Harry Reid is behind in the polls (particularly considering who he is behind to.)
  5. BEG

    BEG Senior Member

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    Agreed, Cort, but is she helping or hindering the cause?

    I was just so proud of Ms. McCleary when she gave her speech, "Research to Nowhere," with her outside voice. However, I'm now questioning the wisdom of joining forces with the Women's Pain Group. Let me extend my sympathy to all who the women who suffer from these painful conditions: TMJ, vulvodynia, endometriosus, and interstitial cystitis. However, ME/CFS also includes men and children; consequently, it seems ME/CFS makes an odd bedfellow with these other syndromes.

    Rather than trying to obtain funding along with these groups, perhaps our time is better spent asking the NIH directly for funding for the WPI. They answered our thank you's with, "Help us help you." What a perfect opportunity for us to ask for funding for the WPI.

    Neverthless, along with Dr. Glaser (in his very fine exit speech at the MECFSAC meeting, which elicited much clapping and sign waving from the audience), I feel this disease should stand by itself . Give us that much respect.
  6. Dolphin

    Dolphin Senior Member

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    I'm not sure how much hope that has. That's not how research money is generally allocated.
  7. BEG

    BEG Senior Member

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    Dolphin, I need educated then. When Dennis Mangan asks us to find researchers from institutions, hospitals and universities, what is a sick population to do?
  8. Dolphin

    Dolphin Senior Member

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    Researchers generally apply for grants. Then they get vetted. There has to be a submission to vet rather than them saying we'll give $x to Y. And projects (that are not inhouse projects) are more assessed in terms of individual researchers rather than institutes. At least that is how it seems to be in most countries - I don't claim to understand the intricacies of the US system but that's how appear for grants. There have been people calling for people to give x to ME Research UK in the UK for example in the past but it was made clear that's not how it is done.

    So I interpret that as he wants more researchers to submit applications.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Cort,

    "Its a friggin shame Harry Reid is behind in the polls (particularly considering who he is behind to.) "

    Yeah, to bad, bye, bye HACK! thanks for helping with the WPI, but the US cannot afford dip shits like this anymore! Go Tea Party!
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is from October 7, 2009. I put the word "inclusive" in it because in my opinion it's important in a democratic society; especially for us.

    Very, very important.

    Delia likes this.
  11. JayS

    JayS

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    I'm bumping this thread. There's quite a bit in here that deserves to be read--and re-read, as well.
    justinreilly and Sasha like this.
  12. disequilibrium1

    disequilibrium1

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    I also found shrinks seemed unable to suspect a client's troubles actually might be a PHYSICAL symptom. It's like they have a cure-in-a-box waiting for anyone who walks in. I have a different chronic ailment, then undiagnosed, and had a group therapy shrink scream at me for not being "present," whatever that meant.
    Roy S likes this.

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