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Article: CFIDS Association Of America Interview with Jennifer Spotila

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 27, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    I think this has been a huge source of problems for the CAA (as I noted in the other article...which I hope somebody reads :))...I got the reasons for doing those programs and I think they were good reasons but I think the backlash against those projects hurt more than was expected. I think the CDC toolkit was the major problem. I think they were helpful in establishing CFS as a more legitimate disorder but that is a slow and creeping accomplishment that doesn't filter down all that well to the community. Instead many people focused on the fact that it was with the CDC. It was about that time that contributions underwent a pretty sharp decline.

    The Research Initiative, on the other hand, was very successful; they shot for the moon and it was finished far more quickly than they expected, as I remember.

    Membership in the organization - not a vital source of funds - but perhaps a barometer of interest and support tumbled throughout the decade. Since many people probably thought that was how they were funding the CAA that meant something.
  2. Cort

    Cort Phoenix Rising Founder

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    I agree that the low amount of donations to CFS orgs is heartbreaking.....and not really understandable....I was just comparing the two.....they really are apples and oranges....

    • MS - Guidestar search brought up 380 MS charitable organizations...On the first three pages I counted over 50 that have budgets of over $1,000,000. The biggest had a budget of $190, 000,000.
    • CFS - Guidestar listed 38 CFS organizations (Some of which weren't CFS). Most had 0 income levels; only a few had up to date financial information... The CAA was, of course, the standout $1.9 million in income in 2009 I think it was....The WPI was listed elsewhere; in 2009 they had $1.2 million in contributions, spent $550,000 on salaries and ended the year with a $200,000 loss

    Its a tough field to raise money in.
  3. jspotila

    jspotila Senior Member

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    CBS's analogy to MS is interesting, and something I've been trying to learn more about in the last year.

    The National MS Society started in the 1950's with a bang - a Senator had a relative with MS and they were able to get Congressional recognition when they were an infant organization. NIH was expanding like crazy in the post-war years, from $180K total funding in 1945 to $98 million in 1955. By 1965, the NIH's budget was $436 million. The MS Society actually attempted to have NIH create an MS-specific institute at the agency. They failed. As a compromise, they supported the creation of the National Institute for Neurological Diseases and Blindness which first received funding in 1952. 11.5% of the Institute's budget in 1952 went to MS projects, exceeded only by funding for epilepsy research.

    Using MS as a template, the CFS community hasn't gotten to 1952 yet.

    I think the Association's record on public policy should be scrutinized, but not just the Association's record. The CAA is the only group to spend money on expert government relations assistance, and that money has come from the general budget because very few donors want to pay for it with restricted donations. $100,000 a year did not buy much help on the Hill 15 years ago, and buys even less today.

    If we are going to blame a CFS organization for NIH's grossly inadequate funding of CFS research, then will we blame other organizations for not doing more? Or perhaps blame the patients who did or did not participate in those efforts? I don't think that's what you are saying, Shane. It is circular logic to say the Association is at fault for the lack of progress in federal funding (and/or too small to do anything about it), and then say the lack of progress in federal funding is why more people don't support the Association.

    The reality is that the Association is David to the federal budget process Goliath. We need more stones and better slingshots. XMRV has created an amazing opportunity to leverage more funding from NIH, and the CFS community - the Association, MCWPA, WPI, PANDORA, Bob/Rivka/Charlotte and everyone on the forums - we're all trying to use that leverage to achieve our common goal: federal funding for real CFS research that is proportional to the magnitude of this illness's impact on individuals and society. I don't see anything productive coming out of standing around staring at the opportunity and saying someone else should have already taken care of it. Let's just kick the crap out of it and leverage this opportunity.
  4. CBS

    CBS Senior Member

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    Perhaps my previous post came off as heavy on the laying blame end of things. It was intended as a (long winded?) response to impatient patient's question: What specific changes are you suggesting?

    I'll try again:

    • Reconnect with the patient community
    • Deal forcefully with THE fundamental research issue of cohort definition
    • Embrace the power (and the chaos) that grows out of a unified community
    • Identify broad fundamental principles upon which a large majority of patients can agree in order to work from a position of strength - there is power in numbers (say a few thousand letters to a congressional committee in an afternoon),
    • Focus on the sickest 25% (you never see an MS PSA showing someone just laying in bed. You see them struggling to perform self care activities, in wheelchairs etc. Just like CFS patients. Drop the "Fatigue" BS and focus on the stuff that's going to kill us!).
    • Prioritize assistance for patients lacking the the basics for a dignified life (disability approval: food, shelter, basic medical care).
    • Did I mention - Don't fear the patient community - make amends with (this is essential to stop all the bad press and effectively raise funds from the community), embrace and harness it.
  5. Kelvin Lord

    Kelvin Lord Ampligen Journalist

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    Well said and perfectly articulated, CBS.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Both of CBS's posts totally hit the nail on the head, imo.

    Jennie said:
    Are you saying CAA has spent $100k a year on lobbying firms for the past 15 years? that's not the case is it?

    How is CAA kicking the crap out of it? I don't see CAA firing off enough stones at NIH (or CDC or anyone else).
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think CBS said it perfectly.

    If you would like more of PR members suggestions, the main historical thread is below, but it is a lot to wade thru- 1700+ posts.

    http://forums.aboutmecfs.org/showthread.php?820-Time-for-the-Big-Talk.-How-s-the-CAA-doing
  8. Cort

    Cort Phoenix Rising Founder

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    We can bash the CAA to death (apparently) and I love CBS's ideas - they are all good ideas and I fervently hope the CAA can integrate them but I be vary wary of saying I would not support this organization because they have not. I would say that the perfect really is the enemy of the good.

    You can choose not to support the CAA because they don't do X enough or because they didn't do Y or because they did Z and you didn't like Z - you can walk away from the organization because of that - but that also means you are walking away from the organization that did

    • turn the CFSCC into a full fledged federal advisory committee
    • that did save the CFSAC committee when it was threatened with being shut down
    • that did very likely provide members of the CDC with the materials they needed to take down Dr. Reeves
    • that was the first to publically call for new leadership at the CDC and tried to fruitlessly to get the CFSAC committee to back them and that did that in the middle of their media contract with CDC
    • that was the only org to fund the Pac Fatigue lab repeat exercise studies that are changing how researchers are studying CFS
    • that is attempting to build a Research Network/Biobank that could takes years off the time to understand and treat YOUR illness
    • that got CFS researchers access, for the first time, to the $50 million Congressional pool of money for Defense- something it fits into perfectly given the GWS connection. Just think if we get one new $300,000 study out of that over the next couple of years - that, alone is a huge return on our investment
    • that did convince a major drug company (GSK) to do an XMRV study with a WPI-like cohort
    • that is funding studies on mitochondrial problems in the brain, doing groundbreaking work documenting all the flora in the gut, that is combining studies to link gut and brain problems together and is investigating endogenous retroviral activity as well
    • the return on investment in the Research Network has already paid off with two studies approved for major funding....we all know how hard it is to get funding
    • that provided 20 webinars with experts last year

    the CAA may not be doing all the things that you want - but nobody is doing those things and if they disappear or fade nobody will be doing those things.....

    Think about it. While we as a community fixate on what the CAA is not doing think about what they are doing as well.... this is a VERY valuable organization......and if we don't look at both sides of the ledger we are making a real mistake IMONVHO (in my often not very humble opinion :). We have a tendency to focus on the negative. I say exhort the CAA to do better - and recognize what they do as well.
  9. CBS

    CBS Senior Member

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    Cort,

    As you know, I am a huge fan of the Biobank and the CAA's role in fostering new research and providing seed money for what is a uniquely coordinated research effort.

    Thank you for highlighting many of the other important contributions of the CAA. I do not doubt the dedication or hard work of those at the CAA. As the largest CFS advocacy organization lot is expected of the CAA. It would be a significant blow if we were to lose the CAA.

    By nearly all measures, the CAA is a very small organization with a lot on its plate. The CAA has accomplished quite a bit in light of its size. However, I refuse to accept the CAA's size as an excuse. I see the CAA's size as emblematic of its failure to connect with, and to be seen as relevant by, a majority of the large patient population. This is the core of my concern. Are there ways in which the CAA has inadvertently isolated itself and (assuming for the moment that they have), how do they proceed in order to tap into what I feel is a much broader and more stable pool of support? I do not accept that the notion that it is inherently difficult to fund raise for CFS. No more so than it is inherently difficult to raise funds for the eradication of eczema.
  10. Cort

    Cort Phoenix Rising Founder

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    I agree with you CBS - I think this is a critical point.

    My take is that the CAA has provided the huge opening for real movement in CFS research to take place with the Research Initiative. In order to make really make good on that commitment they are going to have to work to resolve issues and bee seen as a leader again across the all parts of the community.

    There are various ways they can do this...off the top of my head, they can align and support smaller efforts that have begun outside of their organization, working with the WPI in some fashion would do wonders for them, more strong advocacy aka the press release on psychological studies at the CDC, Q&A sessions with Kim - would not be easy but she's very articulate and I think they would go over very well, finding a public spokesperson....with funds so tight nothing is going to be easy right now but small steps can go a long way if they are consistently done.

  11. floydguy

    floydguy Senior Member

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    It should be a valuable organization but it is clearly floundering. As has mentioned by CBS and others, I think one of the top reasons is that it has lost its connection to the patient community. As CBS said at one point, they are in a bunker. And having a difficult time emerging. As the CEO, I think Kim McCleary must re-engage with the patient community. Why on earth does she not attend events like the NJCFS annual meeting? Why does she not have a high profile blog like the Patient Advocate and others? If I were her I'd have the WPI on speed dial. If she can't do this, the CAA will continue to have problems.

    I think one of the reasons why people are so upset is that this is still the primary organization for us and they should be much more effective than they are. Perhaps the bar is too high but having lost the support of many of the patients is a serious problem.

    I think that Kim and CAA has gotten too conservative. They've decided to operate in the power structure and at the same time seemingly distanced themselves from the patient community. Unfortunately, it's not clear that this conservatism has really helped. It's only fueled suspicions that they are in cahoots with the CDC et al. Contrast that with Judy Mikovits who regularly drops bombs about the power structure in her speeches. Many argue that is detrimental to the WPI's efforts. Nevertheless, patients feel that the WPI is fighting for them and not getting caught up in power trips hanging out with DC power brokers. If CAA's tactics had made some major progress it might be different but their apparent sucking up to the power structure has not accomplished much except to make patients wonder whether CAA has gone DC "native".

    Either the CAA gets a major break through soon or they get passion (this has nothing to do with working hard, I am sure they do). They currently don't seem to have either.
  12. Cort

    Cort Phoenix Rising Founder

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    I think much of this is pretty accurate Floydguy. The CAA, and Kim is probably not going to be happy about me putting this in this way (since that's how she referred another organization - but the CAA has lost it 'mojo' in the PR area. They have a big PR problem. In some ways they are very innovative - they got the CDC to do their first media campaign ever - on CFS! (how about that!), they started the webinar program (great success) last year and their Research effort is stunningly collaborative...

    I asked Suzanne how in the world the gut researchers were going to be able to map ALL the flora in the patients gut on their budgets. She said 'she didn't know!!!" I don't think this has been ever been done in any study....She said they were so excited about doing it that they were pulling in favors and getting help from all over the place.....that is cutting edge research inside AND outside this field.

    The CAA wants to remake how the CFS research field does research - they want to create standardized protocols field-wide out and share data and samples...to me that is a 'knock it out of the park' idea. That is something that if everybody really got how change altering it could be - they automatically throw money at it. But somehow that never gets across and they are viewed as a stodgy, conservative organization. And they are in some areas - unfortunately the areas that get the most publicity......They are not getting their message across.

    So, they have these big exciting ideas that kind of fall flat and then they make these 'little' mistakes that blow up in the public (like the Mildarelli study). The CAA could do themselves an enormous amount of good by doing little things in the public arena right. Supporting the Time for Action campaign, supporting PANDORA with the NIH, supporting the MWPCA - how about a $5,000 grant to the MWPCA? How about supporting quick hitting action campaigns throughout the year like the MWPCA is doing. Collaborating with the WPI on something....This things don't even have to work! All they have to do is get the CAA back into the kick of the community....There's alot of little things they can do....

    They are very nimble and pro-active in the research area....they are stuck in the 'popular' advocacy area.....
  13. CBS

    CBS Senior Member

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    Cort,

    I think we need to stop talking about "funds [being] so tight" and how much that limits the CAA. Funds are tight for a reason and I believe that if those reasons are addressed then funding won't be the issue that it is today.

    If the CAA had spent half of the energy it spent on making nice with the CDC on listening to it's critics in the patient community they wouldn't be in the tight funding situation they find so limiting now that the alliance with the CDC has turned out to be a deal with the devil. In essence, they sold their souls. They are trying to rectify that but patients don't trust them because they aren't taking bold measures to show the community that they get it (eg. demand changes to the disability laws and help put a roof over the least fortunate patients!).

    The CAA needs to regain that trust. If that doesn't happen, they'll never be a leader (my biggest issue with too many of their policies). They'll chug along nibbling at the edges. Their biomarker efforts are important but they are a 40 year plan when many patients don't have 4 years. Right now the defense of the CAA too often turns into "something is better than nothing."

    There is a big problem and it is not being dealt with directly.
  14. Cort

    Cort Phoenix Rising Founder

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    While I'm at it - I'm very supporting of the MWPCA....and they have a dynamic new campaign coming out....but look what the CAA accomplished just a couple of years ago with the media campaign..

    • The Faces of CFS exhibit travels to 14 consumer centers (malls, etc.) and 4 medical conferences resulting as many as 5,000,000 million people viewing it.
    • Media campaign generates more than 400 stories in the mainstream media including stories in the New York Times, Boston Globe, Washington Post, LA Times and magazines such as Woman's Day, Parade, Fitness, Working Mother, Prevention, Consumer Reports
    • Generated over 9300 plays of Public Service Announcements on television and 25,000 PSA’s on radio.
    • Distribute more than 82,000 sheets from the CFS toolkit for Healthcare Professionals to doctors and medical providers
    • Twenty-presentations were given at 10 universities reaching over 1100 students
    • Responded to an average of 600 e-mails and 125 telephone inquiries a month, mailed thousands of free brochures
    • CAA spends 74% of its budget on education and awareness

    That's alot of airtime - alot of ads and stories and presentations all stating that CFS is real and its serious....
  15. garcia

    garcia Aristocrat Extraordinaire

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    We need solid cutting edge scientific research Cort, not public relations faff.
  16. CBS

    CBS Senior Member

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    I find this fascinating. I've been sick for 16 years and aside form the last few years when I have been actively searching out information on ME/CFS, I don't recall seeing a single piece of literature by the CAA. I knew they existed because over a decade ago I sent in a $40 donation. I kept an eye on the organization and in short order decided that I'd find a better use for the very little money I did have as they did not seem to be speaking to me.
  17. Navid

    Navid Senior Member

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    exactly garcia.....all those things listed by cort as CAA accomplishments did what for suffering patients?

    ummmm....nothing!!!!!

    no treatment, no recovery= failure.
  18. floydguy

    floydguy Senior Member

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    Nonetheless, far too many docs still dismiss CFS as not a real diagnosis. I have one who thinks that CFS is really just Lyme disease. Time and again we see that on these boards where even if a doctor believes in CFS they don't know what to do, what tests to run, etc. I think that might be part of the problem at CAA: they aren't using very good metrics. Presumably you do these things to change perceptions and educate. What proof is there that this occurred? Unfortunately, most people still think that CFS is chronic tiredness, even doctors. Personally, I think that at this point trying to educate Joe Blow is not worthwhile. There aren't enough resources. Focusing on keeping researchers and journalists (like Trine) honest I think is effective, though. That money(74%) could have been far better spent I think. At least 74% should be going towards research and a better definition for the disease IMO.
  19. floydguy

    floydguy Senior Member

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    Yeah, I haven't either. I am really unhappy to see that such a large part of the budget goes to this when I've never seen anything from them - with the exception of what Jennie posts here. They would be far more effective paying some bloggers like The Patient Advocate, Heidi Bauer and a few others to keep us in the loop of what's going on.
  20. Angela Kennedy

    Angela Kennedy *****

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    All salient points Floydguy. I think your comment about wondering whether the CAA has gone 'native' actually applies to certain British Charities as well. They too have got cosy wandering aimlessly in the 'corridors of power', made sleepy by the fug of the 'plug-in air fresheners of power' and too full with crumbs of the 'Mr Kipling cakes of power' given to them occasionally, and consequently walk the walk and talk the talk of NICE and the MRC a little too well.

    Patients and their supporters rightly wonder why they believe they are not accountable to the people they claim to represent, why they appear, so often, to work in binary opposition to that community.

    However, in contrast, Invest in ME's response to the latest news from the MRC was a breath of fresh air.

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