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Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 2, 2010.

  1. jspotila

    jspotila Senior Member

    FWIW, some of the facts:

    1. The CFIDS Association does have a strategy - "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."
    2. The Association serves people with CFS, as defined by Fukuda, et al, and Carruthers, et al.
    3. The hallmark symptom of CFS is post-exertional malaise. The Association requires that symptom for a patient to join the BioBank, and has incorporated exercise challenges into its research studies.
    4. The Association does not support the CDC's 2005 empiric definition. The Association also does not represent people with idiopathic chronic fatigue, psychogenic fatigue, or depression (except where depression is secondary to CFS).
    5. The Association does not believe that CBT or GET treat the physiological causes of CFS. Coping skills are for coping, not for treating the illness itself.
    6. The Association uses a wide range of metrics to measure its performance. Both staff and Board use metrics. Some metrics are internal, some are external. Ultimately, the only metric that matters is a cure (or at least a treatment) but progress along the way is measured.
    7. One example of effectiveness this year: we opened the BioBank in March, have populated it with over 1000 samples from patients and controls. This was faster and larger than our initial projections.
    8. Another example of effectiveness: one of the criteria for our research funding is whether the study is likely to succeed in getting larger funding from other sources. Dr. Broderick's study, which we funded for $100,000, secured more than $4 million in funding from NIH and Department of Defense.
    9. Another example of effectiveness: we saw the opportunity to add CFS to the disease eligible for funding under the Congressional Directed Medical Research Program at DoD. This is a $50 million pot of money, and only the conditions listed by Congress are eligible. The Association secured the inclusion of CFS in that list in the federal budget bill. We are monitoring budget progress to protect that inclusion. This is the first time in history that CFS has been eligible under the program.
    10. Through webinars, written communications, participation on federal committees, and presentations at meetings, the Association has actively promoted investigation of the XMRV-CFS connection.
    11. Plans for 2011: issue another RFA, expand the BioBank, and craft CFS-specific legislation to define a comprehensive federal response (a tactic used by other disease-groups such as Parkinson's and autism).
  2. Marty

    Marty Senior Member

    Be still. Listen.

    Boy, do I agree with that. Cort is so often missing the point, and crankiness doesn't help.

    Parvo, great and clear and thoughtful dissertation. I hope the CAA board is listening and will consider the major changes you have described.
  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    I'll just comment on this for now.

    How much money do you have for that RFA already, and why is this going so slowly? Are there ways to speed it up? What is the timetable for the research starting?

    ME/CFS specific legislation could affect us for a long time to come. If the CAA does this without seriously adequate interaction with the community I'll bet it will be seen as more arrogant unilateral behavior. I would expect people to raise hell about that.
  4. Marty

    Marty Senior Member

    I'm glad to see Jennie (CAA respresentative) here. I see her defense; but I hope she is here to listen and to learn and to report back to the board the strong feelings of those who have quit CAA and to convince the board to address them. I thought Parvo's dissertation gave a lot to think about.
  5. Cort

    Cort Phoenix Rising Founder

    Honestly Parvo - how do you define 'psychogenic depression'? (How does psychogenic depression differ from depression?). You know you have to define it in order to weed it out. You have to be able to pick out the psychogenically depressed patients from the rest. So how do you propose to define psychogenic depression so that you can weed it out of CFS? How are you going to decide who those patients are?

    I know its uncomfortable to think well I am lumped into all these other groups...but we are! That's the way it is right now. I don't see there's any strategy in the CAA regarding advocating for all of them - that what's is in the basket called CFS. Thats what they were given by default. Dr. Vernon has said many times that the key in CFS is determining what the subsets are; ie what the separate disorders are. CBS and I sat there while she picked our stories apart and showed how we are different.

    If you suggest that the CAA should, by itself, abandon the Fukuda Definition in their research then I would respectfully suggest that you're asking them to abandon any chance of relevancy in the research field. As bad as it is the Fukuda definition is one string that does link us together. If you're suggesting that the CAA push for an operationalized Canadian Criteria and attempt to include both it and the Fukuda definition (so they can be compared) I completely agree as well. I think an operationalized CCC is a top priority and I hope the CAA is doing what they can to support that. I would note that their XMRV Biobank study did focus on, as I remember, CCC patients and it was the first to do that.
  6. jspotila

    jspotila Senior Member

    Hi Marty, I've been on the forum for over a year and always listen and learn. The Association's Board is not in a vaccuum; we listen to input through many channels both as individuals and as a group.
  7. Cort

    Cort Phoenix Rising Founder

    Believe it or not I actually agree with Roy :eek: at least in part :cool:. I think the unwillingness or inability or whatever to keep the CFS community informed about these issues is a big part of the CFIDS Associations problems. While I wouldn't characterize it as arrogant - we are basically left in the dark about hows and whys of their advocacy efforts.

    The RFA is a good case in point. How that is going to work out?, who are they communicating with about it - what are they asking for...what problems are they confronting......how we can help out? (There must be some we can help out!).... We haven't heard anything yet about the most important grant opportunity in over 5 years (I do get that it may be a way off - and that maybe it's not time). Still this is the kind of issue that I would hope the CAA would really get the patient community involved in -and for some reason they haven't in the past. ( The Chronicle rarely addressed these issues)

    For instance they met with Dr. Anderson...I think I saw a brief statement to that effect. Unless I missed it I don't think there was anything about what they talked about, what they requested he do, what his responses were... the role he plays in all this.....I'm all about advocacy so I think these issues are both interesting and important - I really want to hear about them. Just as importantly I think that's a great opportunity to engage the patient community in a) some important issues and b) show what the CAA is trying to do to resolve them....in short it should work for the organization and the community.

    The CAA is asking the CFS Community to trust them. As you can guess I do trust them but other people do not and once that trust has lost the lack of communication can appear to be arrogant. This kind of top-down mode of communication in companies but I don't think it works particularly well here.

    One downside of being more transparent. of course, is that it takes quite a bit more time and from everything I can tell they are pretty swamped. The CAA may think well we're doing the work and the work is what is important but I really think being transparent and getting the community engaged is in the long run more efficient and more effective and beneficial for everyone.
  8. Cort

    Cort Phoenix Rising Founder

    One last thing - the CFIDS Board said again and again that "Not one person can do X"; and yet on the Forums there is only one person here from the CAA and that is Jennie.

    The online community is an important one and if the CAA wants to achieve all its goals it's going to have to involve everyone. My take on the Boards statement was that they want to reach out more - so let's do it. Let get down into the trenches here. Jennies interview will be a real opportunity to do that. This doesn't take a lot; all it requires is someone registering for the Forums and when something like Jennies interview comes up or a post like this - simply stating your points.

    I find it really puzzling that they have ceded the ground here. Thousands of people view some of the CAA threads....
  9. CBS

    CBS Senior Member


    I agree with you that the CAA does a lot of good work and at the same time I am extremely frustrated that they seem so out of touch with the patient community (and from my perspective, at times Kim McCleary seems maddeningly unaware of the real dangers of this disease. If I hear her say "CFS is a life sentence and not a death sentence" one more time I'll personally show up at the next CFSAC meeting just to make the point that she does not represent me. This statement gives license to anyone listening to take this disease less seriously, it is not true (at least for those with ME) and it completely deflates any sense of urgency - a luxury that many of us do not have.

    Imagine what we could do if all of the energy and frustration directed at the CAA was directed into something constructive and collaborative but that's not going to happen without building trust. Trust has to be earned.

    To a large degree, the CAA is dependent upon donations. They are suffocating themselves to not deal with these issues and in the process they are costing all of us time that we do not have. I want the CAA to succeed but I am rapidly losing faith in their ability to make the most of this important moment in time.

    ETA - I think the world of Jennie and I cannot say enough about how she has consistently handled herself in some very emotional situations.

    Jennie - I always wish you the best and I hope that everyone here appreciates that you're doing this while struggling with this disease along side the rest of us.
  10. Otis

    Otis Señor Mumbler

    I've been struggling to find the right words so here's a small down payment on more thoughts, I hope...

    CBS makes a couple of very good points. Honestly a death sentence some days seems like a might fine deal I doubt I'm alone. I was just recounting my job history and couldn't help but blurt out, "wow I can't believe I used to do so much". Now I'm going to peel myself off the bed to get breakfast in the middle of the afternoon.

    First, it's lives we're talking about. Our lives, our friends, spouses and our kid's lives, etc. The stakes don't get higher and an overt sense of urgency is paramount. I don't get that *at all* from the CAA's public face.

    What's in a minute? That's not much is it? HELL YES. Multiply that minute times the number of those suffering.

    Secondly this is a very unique moment in history. One that may not roll around again any time soon and it needs to be pounced upon. ALL IN. NOTHING LESS.

    For many every second of every day is sheer freaking torture and one minute less suffering for all the patients out there is priceless. Isn't it?

    So a CAA that doesn't vividly and consistently pound the severe nature of this disease with an immense sense of urgency isn't my CAA.

    The CAA doesn't speak for me or ME.
  11. OverTheHills


    New Zealand

    First off let me state so people can understand: I am 50 years old, and I am not nearly so severely affected as people like Parvo and CBS. Nothing life-threatening going on with me. At the moment.

    When the XMRV discovery emerged last year I honestly thought that things would progress quickly: first replication or not, then proof of cause or not, trials to tweak round treatment plans for existing antiretrovirals which might be very helpful even if XMRV was not causal, then governments organise for AIDS clinics and specialists to treat us. The 7th Cavalry were heading over the brow of the hill. Treatments in 2-3 years if it works out. Whoopee.

    I couldn’t have been more wrong – the science is clearly more difficult than I naively expected and the science politics and in-fighting certainly more vicious. I don’t know what is a reasonable time estimate now we have seen the way things are progressing. Five to ten years? Trench warfare all the way, even if XMRV is IT.

    Finally I get to the point.:rolleyes: I don’t want to get better when I’m seventy, if I last that long.

    If I get better at sixty, even if most of the damage is reversible, after 18 years of inactivity, I will be a mess. How can I get fit enough and strong enough for hiking, at sixty? Start low and go slow, and expect injuries (I used to get knee, ankle and hip problems etc etc when I was fit and in my 30s and early 40s). The mental/emotional side will take some getting over too (I know, I’ve had a remission).

    So even for cases like me whose lives are not in danger yet, who just have a non-life in the waiting room, my demand is urgency.

    (Cort, stop reading here please, you’re going to disagree, and I know you’re going to disagree!:D)

    I’m not American, and I hadn’t taken much interest in the politics or the CAA. At that time when I thought XMRV was going to be the answer or not the answer and that we would know quickly, I thought the CAA’s research approach sounded good. They were ‘plan B’, doing fundamental research well so that if XMRV wasn’t IT there would be other science going on to keep up the momentum.

    Then we had all the political studies, the negative ‘quickies’, then the Alter/Lo paper confirmed the WPI, although it made it clear that things were more complex than we thought.

    Today I think that the CAA’s research programme is responding to the demands of scientists for careful slow progress with a difficult disease. That’s not what I want as a patient. I want the CAA and anyone else who can to throw their weight fully behind finding out whether XMRV is IT, as quickly as possible, while I still have a chance of benefitting from the knowledge. It’s a double-or-nothing strategy, not a conservative one, but I want a cure for my generation, if its possible, not the next generation or the one after that.

    I want to have some more life before I die, that's all I’m waiting around for.

    So I say CAA should fund as much XMRV research as it can, now, and sort this out one way or another as quickly as possible. The US government are going to take a long time to turn around, and the UK even longer. Biobanks aren’t enough. Give the money to the WPI if they are best placed to do the honest, quality research.

    I don’t have time to wait and there are plenty sicker than me.


    My first 'political' post. Good job its the middle of the night for most people.
  12. xrayspex

    xrayspex Senior Member

    I am with ya over the hills
  13. Ernie


    There's been plenty of time for them to give the money to WPI and as you can see it hasn't happened yet. And WPI already has a biobank that can be used. Imagine that.
  14. Cort

    Cort Phoenix Rising Founder

    That wasn't so bad over the hills! :D:D I would say the CFIDS Association is doing an XMRV study and I don't why that just doesn't get heard....They haven't funded any research this year or last - except for that XMRV study. It is their first BioBank Study.

    Could they be putting more money into XMRV? I imagine they could...I imagine they could be funneling the WPI some money...... and they have decided the BioBank study was enough and I understand if you think that's not enough and I understand if you think the CAA has not been positive enough and has not done more on XMRV; it is,after all, the biggest finding in CFS history.

    I think you can safely guess from their stance that they've never been convinced on XMRV. They looked at it and something made them wary....I don't see how you can interpret it any other way. They are wary of that finding.

    And I agree with Otis -urgency...is vital.....I don't know if the CAA is 'urgent' or not - they don't give that impression I agree. Their Board is filled with sick patients or the parents of patients - I imagine there Board is as urgent as anyone....but even if you don't feel they are as urgent as you wish I still say you are kicking yourself in the shins if you don't support them....

    I was just thinking 'why do I allow myself to get into such grief about the CAA". Its so painful at times. I get people upset at me...I'm sure it hurts Phoenix Rising....It cuts me off from supporters and I think why not just forget it...just let go and then the reasons just pop in...brain mitochondrial problems....vascular studies.....endogenous retrovirus studies...the repeat exercise studies...their BioBank, the budding Research Network....a voice in Washington (you do realize that NO ONE else is even trying....and I mean that almost literally - no one is there)....listening to ME/CFS experts on the webinars....I would support them just for the mitochondrial brain study! If they were only doing THAT - I would support them. So personally I think its crazy - absolutely crazy not to support them even if they are not doing things that you or I want. I really do!

    On other hand I can certainly see why anyone would rather support the WPI at this point. XMRV is the sole finding that has the potential to lead CFS out of the woods. I think there are some other potentially gamebreaking research efforts going on but there's nothing like XMRV. A retrovirus would be an almost perfect ending to the CFS story....they know how to study...a huge infrastructure has been built up to work on them. Dr. LeGrice told me they can shift from HIV to XMRV so easily.....Its a piece of cake....
  15. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    Just posted on Co-Cure.



    That's the best they can ask for?


    This is crazy!
  16. Cort

    Cort Phoenix Rising Founder

    I imagine that you are asking for a cure??? But honestly the CFIDS Association is saying, in its rather not very exciting way - that that kind of research is crap.... They're saying not more research on personality and you say that's crazy.....

    What should they have said?
  17. Cort

    Cort Phoenix Rising Founder

    I'm looking at this thing and to tell you the truth Gracenote - that comment is the kind of thing that just makes me go nuts! They say the CDC is way off base, first of all, on their research.

    Then they take a shot at the Empirical Definition and try to obliterate the CDC's emphasis over the past couple of years.

    then they note that the federal advisory panel has nixed the CDC's emphasis as well and they emphasize the huge toll CFS takes.

    This is crazy? This is what I want them to say. They are taking a stand against this kind of research.......Isn't that what you want???
  18. Marylib

    Marylib Senior Member

    New Zealand
    AIDS and Civil Rights groups lived in communties?

    Huh? Seems to me to vast generalizing. The movement within the gay community to organize against AIDS was hardly a piece of cake. The civil rights movement was by no means a piece of cake. People died. Lots of people died.

    And how do you mean they lived in communities? Pardon me, but I don't quite get it.

    I was in Memphis during the civil rights movement in the sixties, including the assassination of Dr. King. I was in San Francisco when the deaths from AIDS began.

    I do not remember it that way. Not at all.
  19. Cort

    Cort Phoenix Rising Founder

    Just think about it a minute Mary Lib.....both groups have been persecuted in the past. Every persecuted group from the Jews to the African Americans to gays have formed their own communities to escape from the persecution and to be around each other. If you've ever lived in a major city you may know of a 'gay area'. You almost certainly know how segregated white and black communities often are.

    If you were SF during AIDS epidemic then you surely know of the Castro district....If you were Memphis surely you must remember white and black areas of town..

    I didn't say those movements were a piece of cake. I said that organizing when you are located physically close to each other - as those groups were and often are today - made it much easier for them to organize....
  20. Sean

    Sean Senior Member

    That is my hope.

    Also agree with what you said at #77. They are fairly strong criticisms from the CFIDS Association about the CDC's work and direction.

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