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A Little Poisoning Along the Road to ME/CFS
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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. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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    Some background on this letter writer
     
  3. Cort

    Cort Phoenix Rising Founder

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    The letter writer brought up some issues with the CFSAC panel that have been rather obvious for some time. One is the tendency to allow speakers to go on and on using up valuable time and diverting attention from the real issues. That actually has been curbed recently - but it did show up at the last meeting. In my opinion the CFSAC panel should require written reports ahead of time from its ex-officio officers. Those reports should detail the relevant activities the organization has engaged in since the last meeting and should be posted on the website. The Committee should then base its questions on the written reports and whatever other issues it feels are appropriate.

    Regarding the NIH, for instance, it should include the number of grants applied for, the number of grants accepted, the total dollar value of the grants, the total dollar value of all the grants underway and what the Trans NIH Working Group is doing to increase funding for CFS. The NIH should report on progress towards creating Centers of Excellence; if there is none they should explicitly why there has been none. If they state there is no money available the Committee should arm themselves with facts demonstrating if other COE's are being built or other disorders are getting increased. The Committee should endeavor to clearly understand why a million person disorder gets so little funding - there are reasons and the only way to combat those reasons is to get them out in the open. The Committee has never endeavored to do this. They are happy to rail against the low funding but they have actually attempted to get to the 'why' for the low funding.

    The Committee should also agree on a series of questions -thought out well beforehand - that will get clear answers. The Committee members ask alot of very interesting questions and they do illuminate the issues but they appear to be ad hoc much of the time. The Committee should also consider focusing on one issue at a time - do one long session focus on the CDC. During the next focus on the NIH. Agree on a set of issues and questions beforehand and then attempt to get to the bottom of them. Clearly lay out the questions at the beginning of the meeting and don't move on them until the Committee has a clear answer to each of them. Several times the Committee has seemed to be on the edge of breakthrough in understanding only to have the conversation diverted.

    I know the Committee is busy. I have told the Committee that I am available to take the time to provide them with any information that would be helpful to them.
     
  4. Recovery Soon

    Recovery Soon Senior Member

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    When I watched the conference I also wanted to smash the TV screen. It seems every speaker was just grandstanding with platitudes, compliments and self-congratulatory remarks.

    I recall someone at one point commenting on how good Wanda's hair looked, and wanted to vomit- and her replying with a big grin that the purpose was for the patients- like that actually needed to be said.

    It's really difficult to be sick and watch this unproductive, self-indulgent circus.
     
  5. Kelly

    Kelly

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    Comparison?

    How does the CFS AC differ from other HHS ACs ? Give specific illustrations.
    How might the interactions in other ACs you consider more successful extrapolate to a different committee with different dynamics?
    How do you factually know that members of the CFSAC do not speak to each other between meetings?
    Please give specific examples of how a more urgent and/or confrontational style will change facts or change specific dynamics.

    Asking for an update on the number of NIH grants applied for and granted as well as specifics is a good concrete example. Let's hear more.
     
  6. Recovery Soon

    Recovery Soon Senior Member

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    Wonderful questions...would make for a colorful Venn Diagram.

    Here's one more- How the hell has funding for a debilitating disease with 1 million afflicted remained on par with Hay Fever for years WITHOUT a sense of urgency?
     
  7. Cort

    Cort Phoenix Rising Founder

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    I know the members speak to each other between meetings - I wouldn't want to imply that. My guess is that they do not have a specific itinerary of questions to ask. I wouldn't be surprised if few advisory committees do.

    I thought the Trans NIH Working Group (CFS Working Group) session was instructive. This is the group that controls the purse strings for the CFS at the NIH. This is the group that ultimately will deliver or not deliver Centers of Excellence or major grant packages to CFS. This is the first time members of this group have been called to appear before the CFSAC committee that I can remember - which is an astonishing fact to be given that funding for CFS research has been declining for about 10 years.

    I saw their appearance as a chance to finally get clear on, for instance, why there isn't four million dollars in the budget to create three or four Centers of Excellence for CFS - a disorder that has 15% diagnosis rates and no clear treatment. What I would like to know is what the Institutes say when the CFS Working Group asks them to pony up for COE's. Dr. Hanna, the NIH rep before Dr. Mangan, always said there's just no money....yet COE's were being instituted for other disorders while she was saying this.....so there was clearly money available.

    My guess is that the Institutes would say something like " the science isn't ready" for a COE or something like that.......a response to that would be something like......"what are you doing to get the science to the point where you can start treating these people" always bringing it back to a million or so people who are not being treated well.......Or it could be "we don't think its a real disorder"......in any case - you begin to open up with the conversation regarding CFS really is at the Institute level. Only then can you speak to or argue with their concerns.

    The CFS Working Groups appearance was a chance to question them closely about their support for CFS and how to improve it. The committee could have asked the NHLBI rep just how many studies they have funded on CFS and how many grants with acceptable scores they have turned down. It could be that they haven't had many grants....that would point up the need for things like RFA's and Conferences to get more researchers into the field.

    You can't know unless you get explicit information. The Committee does fine on the larger level but in general but they've never dug for questions like that. Nor do they seem to be interested in getting that information. I've offered to dig anything up for them they want - I know they're busy - but they don't seem to be interested.

    I really think its an organizational problem. That may just be the way AC's are - they're not great on organization. We didn't even know the DHHS wasn't even looking at the Committee recommendations for years!

    If Dr. Koh tries to defend the fed govts response -saying that 50% of the recommendations are being acted on he should be politely but firmly told (Lenny Jason would be great at this) that that's bullshit! If Dr. Koh says that CFS is so so important (and he did it about 10 times in his short address) and then allows the NIH to keep treating it like its so so unimportant he should be called on that fact, politely but firmly.

    I don't the know the best way to inform someone important that you're talking BS and still keep them on your side - I really don't. I know personalities can be important and alienating the wrong guy could cause you grief for years but until Dr. Koh's and other officials actions actually resonate with their words they should be aware that at least that will be highlighted.

    I'm kind of in the same boat as the letter writer - we are much too easy on them. Dr. Hanna has been burbling half truths for years to the Committee and she was rarely, if every, publicly called on that. At some point you got to put 'getting along' below 'making a difference'.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Of course if the Committee felt that we really had their backs - that we were going to be behind them - they might feel more emboldened but honestly, I don't know how they could feel that way. The CFSAC website is getting alot of attention - patients are clicking on it and watching the meetings - that's very important. That can dampen some of the talk that the CFS Community doesn't care about the program. There have been meetings in which just a handful of people are there to watch the govt do its business on CFS....

    If we had that place lit up with patients and the phones lines were jammed with patients wanting to talk - that would be helpful. That really is helpful - the environment in the room is important! Its like being in a football game - they get jazzed when we get jazzed. They are doing their work on the field and if we are there in the stands cheering them on that can only help. Trying to advocate for a community in a half empty is not easy! :eek: I think there's got be enough people in Wash DC alone with CFS to fill up that little room and certainly enough people to fill up the testimony time - which, unfortunately, did not happen last time.
     
  9. Otis

    Otis Señor Mumbler

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    Glad to see this topic on the table, it’s been nagging at me. If my laptop were not brand-spankin’ new last month it probably would have become airborne.

    Cort we’re talking about what the committee needs to do here and suggesting the patients play a role in it's failures is just not right and it's not germane to this topic. An inept committee is not going to draw patient support. I think we had more than enough people in the room, on the phone and watching the proceedings to make it clear that we’re watching and that we care. Our docs know our plight. If they need energy from us to grab someone by the proverbial shirt collar and tell them what we need, then they need to get back to the clinic or the lab and let someone else serve. If SOMEONE, ANYONE would just do this the flood of patient support would come.

    I was glad to see a mention of Robert's Rules. I’ll mail a copy to everyone involved if I thought they’d get read. The May meeting was pathetic. No member, let alone the chair (who was the MOST confused), of a committee should not understand the difference between a charter and by-laws. Simple stuff. Thank God for Wanda. Earlier today (pure coincidence) I gave my 9 and 6 year-olds a mini-lesson on how a formal meeting is run - how to put forth a motion, have a discussion and hold a vote.

    A meeting is only as good as the chair and we have a bad one at the moment. Meetings need to be run crisply, discussions need to be cut off if they wander around in the weeds, and each topic needs a recapped for the record with actions assigned if necessary. Tabling a discussion is also a valid method for killing a non-productive conversation.

    As for demanding what is needed, here’s a simple example. Even Dr. Jones has lamented that the requirement for webcasting, etc. has reduced the number/duration of meetings. Damn it, if you can’t get the job done in the funded amount of time then demand more in the interest of GETTING it done.

    And then there’s agendas and speaker selection. I continue to be baffled and dismayed here. For instance, we don’t need a self-congratulatory topic on the part of ERISA that actually works. We need a hard-nosed conversation about the disability part of that law which is horrifically broken and leaves people with legitimate disabilities without the income that disability insurance is supposed to provide. WTF, over?

    I could go on but I yield the floor to the next esteemed patient speaker. ;)
     
  10. George

    George waitin' fer rabbits

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    huh. . .I wasn't there in person, cause I'm too darn sick to be there, which is why we have an Advisory Committee to represent and to be the voice of the patient community to the people with the money. If they need my sick body in the room to do their job then we have a major problem.

    I have to say, Cort that I saw a totally different meeting than you did. I saw two days of people filling up the air with information on the state of research for ME/CFS. But is seemed as if everyone already knew in advance what was going to happen and were rather light hearted. Then I saw the NIH under Dennis Mangan come in and pretty much tell the CFSAC committee what they needed to do and what was going to happen and how and when. Then I saw the CFSAC committee write up those EXACT recommendations without a t changed or an i moved and the meeting was pretty much adjourned.

    This was actually pretty hopeful in my view. The NIH has never taken ME/CFS seriously. After all there were all these other lovely, interesting and sexy illnesses with big names and lots of powerful people who were attached to them. Why would anyone in NIH pay attention to an illness with no known cause. You can't fight or fix a ghost and that's all ME/CFS was, a ghost illness with no cause. So no matter who was on CFSAC or how hard they worked or what they tried or didn't try to achieve nothing was going to happen. If I have a dozen computers that need a simple RAM upgrade and one computer that needs to be rebuilt from the ground up I'm going to going to stick the problem computer in the corner and get the other stuff done first. Just human nature. So now that we have a cause (most likely) we have the attention of the people who can make things move.

    Plus, once it's announced that MLV's are the cause of ME/CFS then the CFSAC will dissolve or be dissolved and funding will flow but we haven't gotten to that point yet.

    What we are going to need however, in the near future is a strong patient liaison group that can pull together information, like clinical trial locations, research updates, medicare/medicade information, treatment information and other important information that will begin to flow. They will need to get this information to the patients, they will need to liaison with government agency and to get patient groups involved if and when (grins, cause ya know it's going to happen) the agencies don't respond to patient needs, to keep patients safe from bad practices and to make sure things stay on track.

    I can't see blaming the committee for what it could, especially at this point in the game. (grins)

    Anyway that's what I see. . . I yield the floor to my most esteemed colleges in illness. . . NEXT!
     
  11. Cort

    Cort Phoenix Rising Founder

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    I agree that everybody is responsible and that the patients not being there in force does not take the committee off the hook and there is a difference between a packed room and an near empty room.... People are sharper...conversations have a bit more urgency...when there's a packed room - its just human nature. It doesn't take anybody off the hook, I agree, but it does make a difference.
     
  12. Cort

    Cort Phoenix Rising Founder

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    I agree George that its a difficult situation - when I saw the other diseases that get low funding at the NIH - diseases that are like CFS - I again realized what we are up against. The CFSAC panel does not have an easy job. They can recommend...they cannot dictate.

    The next year is going to be very interesting. I asked Dr. Freidberg about the RFA for CFS. After the last Conference in 2003 an RFA was promised but he said there was no promise of an RFA after this conference. Honestly, I think we just draw the frigging line right there if there's no major grant announcement. Its time we got some real funding. As the letter writer said - no ones getting any younger around here. We just had a decade in which funding for the NIH just about doubled and funding for declined declined.....and it was already in the pits...that's 10 years - that's pretty ugly....
     
  13. markmc20001

    markmc20001 Guest

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    I hate to burden all of our docotrs with this CFSAC merry-go-round. They have really taken enough abuse. I'm not familiar with this secret journal he mentions "If the docs hadn't published their own private, unindexed, secret journal with a fringe publisher"

    Here is my impression of the CFSAC and CDC. They don't want to do anything and they never intended to do anything. The CFSAC is there to be punching bag and something to point at to say something is being done. So if anybody asks what are you doing for CFS Mr government? Mr government can say, "OH RRIIIIIGHHHTTT... there is this panel called the CFSAC, I think they meet once or twice a year for the last 25 years. GO ASK THEM next year when they meet." HA!

    Mr government, the CDC, and CFSAC, have this clever merry-go-round game where the patients get to meet with the CFSAC, an "advisory commitee" with no accountailibty. Then the CDC can point at the CFSAC when anybody asks what is going on. Just round and round.....THe CFSAC is BAsically a phony group set up to make it look like something is happening, and to take the heat and blame so the CDC can go on with creating their phony balony psych studies. When nothing is, or intends to be done. They have designed it to be a passifier for 25 years...While the rest of us have watched our families and docotrs give up on us, and get brain washed into believing the phony studies published by the CDC. HA!

    The way to handle this joke of a CFSAC meeting, is to have like a 100 patients and doctors all show up at the CFASC meeting, and testify them the whole thing is a joke very directly. One after another on TV. "CDC and CFSAC, we know this meeting is not intended to get anything done, but to be cover for the CDC. You have been jerking us along for all these years....."ANd then show a timeline project managemnt chart showing how nothing has been accomplished for 25 years. Year after year. ENd of meeting. Then follow up with letters to all the governemnt officails telling them the same thing. The CFSAC and CDC are all Balony.

    The only potential savior I can see at this point is the WPI who has figured out the game, and the only way to make progress is to go around the CDC. Then great people like Illa Singh who have put a good box around how to nail down XMRV testing for good. Or amybe if Ilan Lipkin, is really assigned to help solve things, and comes out and agrees that XMRV is real, and follows up with substantial research funding for legitmate studies and the WPI.
     
  14. Recovery Soon

    Recovery Soon Senior Member

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    It's called Monkey in the Middle. Or in our case, Macaque in the Middle.
     
  15. Kelly

    Kelly

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    Not really a secret

     
  16. Kelly

    Kelly

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    Straw man

    No offense intended, but determining the effectiveness of Dr. Snell's leadership based on adherence to Robert's Rules is a straw man argument. There is no evidence quoted here guaranteeing that if Dr. Snell or any other chairman adheres to Robert's Rules that it will magically turn things around.

    As for bad practices a recent post on co-cure directs readers to the CDC GET exercise therapy guidelines which then take you to the United Kingdom for further guidelines. At no time is Dr. Snell's biomedical research on exercise in CFS patients referenced nor are consulting physicians told the medical dangers of using GET.

    There are legal and ethical problems with recommending a questionable treatment without making patients and their doctors aware of the dangers to the patient. So should the CDC be questioned about that by the chairman who is doing research that the CDC ignores? Or should yet another patient testify regarding this practice preferably one who is a lawyer?

    Instead of focusing on the petty - focus on what will make a difference.
     
  17. BEG

    BEG Senior Member

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    Everyone . . . Don't you know? It's ME/CFSAC. And it's one cozy little group. Lennie Jason is the one to watch. Hope he never stops asking his very pointed questions.
     
  18. Otis

    Otis Señor Mumbler

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    No offense taken, it's plain as day, Chris Snell runs an ineffectual meeting. Use whatever method you like. It's HIS meeting, his agenda, his speakers. It doesn't matter what the topic is if the meeting wanders around aimlessly which sadly it does.
     
  19. Navid

    Navid Senior Member

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    if anyone thinks this meeting is effective in any way shape or form, i respectively say you are crazy!!!! it is the biggest waste of time i have ever witnessed in my life and it's been going on for how long?...20+ years.

    sorry, perhaps there are some good/nice docs there, but they have done shit for research and effective treatment of this disease over the past 20+ years.

    i could not believe my eyes and ears when i watched the last mtg.

    cort i undertand your pt, but it makes no sense given our patient population; we are sick in bed, how can we go to washington and sit in a meeting for 3 days....plus the participants in that meeting have NO power to make anything happen....so we waste our tiny bit of energy watching that debacle.

    finally isn't that WHY we have a patient advocacy group....to represent us at such meetings.


    i worked in a multi-billion dollar company for years and managed a huge business....nothing is ever accomplished in those dog and pony show meetings. all decisions and actions are decided beforehand and just presented for others to learn about at the actual mtg.....to think you can make things happen in such a setting is naive.....

    that's why the loud can bangers, rabble rousers were a refreshing voice to hear when they used to be on this board....they're not going sit and be nice, quiet, abused patients anymore.

    OK my rant for the day.

    bye
     
  20. Kelly

    Kelly

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    Yes, he could run a tighter ship, but give the man some slack, he's a researcher not a parlimenterian. I think part of the problem is that patients expect these researchers to walk on water when they aren't be all things to all people. Obviously patients are frustrated and legitimately so, but taking it out on people who are doing their best with the hand they are dealt is rather ineffective. At least as ineffective as screaming about the way government committee's are run. Expecting more than can be delivered by its very nature is rather counterproductive. And that is my point. Pointing fingers is rarely productive. And the finger pointing on this thread is no exceptions. Or did I miss the earth shaking because this thread changed anything? :D
     

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