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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Article: Letter to Fred Friedberg and All IACFS/ME Officers

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 27, 2010.

  1. HowToEscape?

    HowToEscape? Senior Member

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    "funding for declined declined"

    Could have been spell check intervening , but the phrase actually speaks the concise truth about how we have been written off.

    We are nameless, we are the declined. Lower case, not a name (no face), object of a bureaucratic procedure, not a proper noun.

    But somehow we must fight AIDS had a ready made constituency, and people who knew they the clock ticking on them remaining healthy enough to fight for years after diagnosis. We're a mess, mostly. If my experience is any guide, then many (most) of us are using whatever strength is available to have a place to sleep and so on. The brain shuts down early, after virtually any physical exert. It is falling, without ground in sight.

    There is a blueprint for fighting for a cure - polio and AIDS being good examples. Who among us has the strength to carry it out?
     
  2. WillowJ

    WillowJ Senior Member

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    That's very true.

    And ability or no ability, we have to do something about it.

    I'm just not sure what. I've been emailing news people, an actress, my Senator, advocacy organizations... and I don't seem to get any takers. Some sympathy from one or two organizations (but that issue is outside the scope of this organization), but no advocacy assistance. Not sure who to ask next.

    :confused:
     
  3. Molly

    Molly

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    "There is a blueprint for fighting for a cure - polio and AIDS being good examples. Who among us has the strength to carry it out?"

    The sad truth in this statement lies in the reality that the real professionals have ME! I don't think that individually any of us have the strenght to carry "it" out, but we can "tag-team" those who are in the position of authority, and persist in acting either selfishly or irresponsibly.

    Collectively I have been impressed with the talent of the victims of this illness. It is our families (like the Whitmores and others like them) or each of us individuals with professional knowledge who maintain a quest to know more about how to progress with a diagnosis, treatment, and a successful cure. What we lack is the strength, endurance, unity and authority to make change come for our relief.

    How do we develop the stage to get a seat at these tables of ex-officio meetings and govenrmental priorities without becoming victimized even more? Pacing works to their advantage and our quality of life continues to suffer. What appears to this newbie is that the new generation of ME patients are not as passive as those who have suffered so long over the past 20 years with a blinded belief that the "Doctor's know best". From the PCP to the Insurance magnants, we have no hope that we could expect any committment for restoring any quality of life in our lifetime. Our confidence is no longer in the medical professionals at all levels of interventions. Unfortunately, the CSFAC meetings are a mere takeoff of the movie "Awakenings". It only brings change for that season, but for who's benefit?
     
  4. Cort

    Cort Phoenix Rising Founder

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    Good points - these are mostly researchers. Chris is alot better than the last leader. I think he's quite good actually; I think he has a really tough job because the committee is not in general focused as well as it could be. ALot of this is organizational for me....I just see missed opportunities and, of course, many times I am gladdened by the committees expertise - many times they bring real insights into the process. I feel though that something is missing.

    The Trans NIH Working Groups was kind of a watershed for me.....This is the group that controls the budget for CFS at the NIH. I felt it was an opportunity to speak to what is not working from the people who know what is not working. TThey are the ones that communicate directly with the funding bodies. I think they want to assist CFS - but they've clearly been hampered from doing so. The question is why? What are holdups at the NIH that are preventing CFS from being treated as a real disorder that deserves real funding?

    I felt giving them a couple of hours and then lining up a series of questions would have worked. If the panel had facts at their fingertips they could use to display their concerns - that would have helped. A key problem is lack of grant submissions to the Review panel. Getting researchers interested in this disorder is a key issue! If they had had the number of grant proposals before them over the past year - and then asked the WOrking Group 'what do you propose to do about this" that would have generated something. At the very least it would have got them talking about - and put them on record about an RFA next year. That is a our single biggest hope for increased funding - the CFS Working Group will the ones that fund it or don't fund it - and there wasn't a single question about that.

    It sounds to me like - in order to do that it has to be in the budget now... Is it? No one even knows! No one, at least in public, has asked....maybe its been privately addressed...I don't know but I asked Dr Friedberg, head of the IACFS/ME about it - and he checked wherever he checked - and he didn't think it was a done deal.

    I don't know if that Committee has ever met with the CFS Working group before and it may very well be quite awhile before they do so again.
     
  5. Cort

    Cort Phoenix Rising Founder

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    I think you have some real points. I would never, ever say the CFSAC is not trying or is not committed - they are all people who have dedicated their time and many of them their careers to CFS. CFSAC is only an advisory committee - the govt can take or reject their recommendations as they will. It is up to us and everybody to cry foul when the govt do nothing. That may be the only thing they will respond to - it's certainly one of the ways we can contribute. We have to keep an eye on this and we should have a page devoted to the CFSAC Committee recommendations and what the govt has done about them.....:cool::cool::cool:. And act when they don't................:thumbsup::thumbsup::thumbsup::thumbsup:

    I've been complaining about the panel but we need to get better organized as well.
     
  6. HowToEscape?

    HowToEscape? Senior Member

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    That's more than nothing, and more than I've managed recently.
    How about following up the email with paper mail? Physical letters are less common and get more attention, especially if they are not a form letter.
     
  7. Marty

    Marty Senior Member

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    We see agreement that the ME/CFSAC committee is not only ineffective but a waste. So what can patients do about it? Let's hear your recommendations. Here are some:

    1. Reduce the size of the committee. No group this large is going to do anything but get together and talk and drink coffee, as they have for 20 years. Even the patients' testimonies have remained the same for 20 years. Major change is needed.

    2. With a much smaller group, the chair needs to assign individuals to organize an action at every meeting, not a discussion. Discussions must be held offline. Come together with a written plan to implement.

    3. Assign an individual to present an agreed-upon plan for the Centers of Excellence at the next meeting and define the funding. And require full funding, not just a beginning. We have already had the Centers, the doctors are all in place, we know how to do this. Require that they be re-funded now.

    4. Stop "asking questions" at the meetings and start defining requirements. They not only can demand, it is their task to demand. They are supposed to be telling HHS what they need and how to do it. This takes one meeting. The next meeting should be the HHS response. It would be hard to fill up half a day for a meeting if people just came prepared.

    5. Members must focus their comments, especially those who have had ME/CFS. People must be honored for how short and complete their comments are, not for how long they can hold the microphone. The chair can really move this along.

    What other ideas do you have and, more importantly, how do we get this across to the committee?
     
  8. Kelly

    Kelly

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    Demanding?

    I don't mean to shoot you down, you have the kernel of some good ideas, but I would recommend starting by listening to committee members who have more experience in the government arena and then attempting to structure within the limitations rather than demanding based on assumptions.

    Keep in mind that everyone in that room has an agenda influenced by their personal experiences, desires and temperament and sometimes what seems to be obvious common ground has just enough of a twist that people butt heads rather than finding consensus and efficiency. That is the nature of committees composed of human beings.

    I realize this is philosophical in nature, but true none the less - ask yourself what's in it for the other person and how do we get there?
     
  9. Marty

    Marty Senior Member

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    Kelly, having been active for many years and participated in many CFSAC meetings (and led other activites), I ask you: what have all those philosophical excuses obtained for us? I used to believe as you do; I have learned now that we have to take the reigns like other advocacy groups have done. I hope you will re-read the ideas and suggest how we can accomplish them, not how we can't.
     
  10. Kelly

    Kelly

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    Most of what I wrote was explanatory in nature - facts are just facts. But, that probably didn't make them seem any less negative. Although I've not attended all that many CFSAC meetings, due to the nature of my work I've covered what seems like a billion govt. meetings at all levels and they are all much the same. Today is a very hectic day like most, but I will give this some serious thought and get back.
     
  11. RivkaRivka

    RivkaRivka Senior Member

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    i really think the next step in our ME/CFS struggle is getting people to go to Sebelius, Collins and Fauci's public talks and having die-ins and lie-ins. the media will already be there. perfect. let's use them!

    these public protests will attack the "nice" public image of the NIH ("gasp! the NIH is letting people die and remain bedridden for decades!!!???") and thus will motivate the NIH to act faster on our behalf.

    this is what ACT UP did, and time we did it too. finally time we did it too.

    but like everyone already said, it is hard to get bedridden sick people out into the streets (or NIH public talks).

    so for now, we need to make noise the way we CAN make noise: emailing, calling, faxing and video campaigns. we have found that these are proven methods for obtaining change.
     
  12. Marty

    Marty Senior Member

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    I agree entirely that we need to emulate the tactics that worked, particularly since we know that hundreds of thousands of letters didn't convince the CDC of a thing. You made me think: I wonder if Sibelius/Collins/Fauci have ever seen a sick ME patient. Think about the government officials who have attended the ME/CFSAC meetings; from a distance they may have thought that the patients looked pretty healthy, and they certainly were creative and almost eloquent. Twenty years ago we used to lie on the floor in the back of the doctors' meetings (of course, Hennessey brought his pillow and blanket and laid down in front of the center aisle!). Then we got smart and requested tables on which to lie. I haven't seen that in the last 2 ME/CFSAC meetings. (Watching the mother with the two teenage boys sitting there all that time made me cry.) We also requested an extra room next door for those who needed to lie down in darkness and quiet for a break. Recliners would be nice, too, now that we know why patients can't remain upright for long. Those of us too proud to use wheelchairs relinquished our pride for the occasion, if only to line the wheelchairs up outside the room. Let's request those accommodations for our handicap from now on. Let's require that the microphones be brought to us, too, when we are in a meeting where we would have to stand in line to make a comment. A few tables might be more effective than a roomful of "healthy looking" patients, which we aren't going to get anyway. The brave patients who live near Washington have been to so many meetings, and anyone who has done it at their peril knows the cost. But one time might be worth it; you feel good for doing your part and you also gain an understanding of what a government meeting is like. So if people could make the trip, maybe some would consider it.

    Here is a list of other projects: http://www.cfsuntied.com/blog2/ . If each person participated in just one....
     

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