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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 would note that funds appear to be as tight for everyone....they appear to be as tight for the WPI as they are for the CAA - and they have community support. It took the MWPCA, what, six months to raise $10,000. Its not like this community has alot of money to give. (Which is why finding outside resources is so important.)

    I agree that in order to do those things that they need to do they need to fix their image with the community! .That should be a chief goal in my opinion. Boldness would help alot.......They need to be more vibrant organization. You can combine vibrancy and professionalism.

    Let's not overdo antipathy towards the CAA, though; yes it's very strong on the online community but their Research Initiative, which came on right on the heels of the CDC media and provider education contract, was one of their most sucessful initiatives - and it was completed more quickly than they expected. They also completed a substantial enrollment into the Biobank program more quickly than they expected. A major problem for them now is probably that they did not discover XMRV - nobody could compete with that - and it makes sense that patients support the WPI in their efforts given the potential significance of that breakthrough. I imagine their money intakes just sucks this year because alot of it is going to the WPI - which makes sense.

    I do want to point out that the CAA hasn't exactly made nice with the CDC for several years now....referring to their research effort as 'a bridge to nowhere' :cool: and calling it a 'failed program'....among many other statements - that are quickly forgotten, I guess, because it does not fit their picture of the CAA - because, as you noted, of their earlier association with them.
  2. Cort

    Cort Phoenix Rising Founder

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    What can I say? :confused:I agree we need cutting edge scientific research the most...and a media campaign is decidedly secondary to PR stuff....

    not that I wouldn't be happy to figure out a way to use millions of dollar in federal $ to publicize CFS...:cool:
  3. Cort

    Cort Phoenix Rising Founder

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    This is just a symptom of the problem. They've got to figure out how get their message out - which is what I alluded to earlier and engage in highly visible actions that involve the community and that it supports.
  4. Cort

    Cort Phoenix Rising Founder

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    I must say Angela, you do have the gift of words :thumbsup: That is a danger that confronts all non-profits when they reach a certain size, I suppose.
  5. urbantravels

    urbantravels disjecta membra

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    I disagree that public relations campaigns and awareness are completely unimportant next to research. I think we all know pretty well that our disease is not only misunderstood by most people (including doctors), but actively stigmatized by many. I'd say it's "passively" stigmatized by many more - that a lot of people are willing to pay lip service to it being a serious disease of some kind, but privately have their doubts about how legitimate it is as a "real disease".

    Whether or not past awareness campaigns have been effective is a separate question. I didn't have ME/CFS much on my mind until I came down with it; but as much of a news junkie and science nerd as I am, I don't remember ever hearing anything about an awareness campaign.

    Without popular awareness there won't be broad-based support for private fundraising efforts beyond this tiny subset of patients that follows the news avidly and sends their pennies to the WPI; and there won't be enough public pressure for funding to truly change course at the agencies.

    Our patient community is small, debiliatated, and largely impoverished; why don't we have hordes of healthy supporters out there demonstrating, demanding action, and organizing walk-a-thons? I'd say it's almost entirely because of the stigma of our disease.
  6. floydguy

    floydguy Senior Member

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    I disagree. CAA has proven that PR campaigns haven't been effective by any metric I've seen - funding certainly hasn't gone up and I don't see much of a dent in the stigma. They aren't effective because of the terrible name and because the disease is too nebulous. Until one or both of these things change I doubt opinions are going to change outside of the community - even if 10s of millions are spent.

    People don't want to admit they have CFS. And if they do their healthy friends, family don't want to admit it. The stigma has to change before people give a damn.

    It's also a question of priority. 74% seems way too high to me.
  7. urbantravels

    urbantravels disjecta membra

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    If you believe that CAA's publicity campaigns have been ineffective, it does not logically follow that all PR campaigns are or would be ineffective.

    Just off the top of my PEM'ed head, *I* think PR campaigns about this disease might be more effective if they were darker and more hard-hitting about the grim realities of this disease and the toll it takes - and if they confronted head-on the fact that there *is* a stigma, instead of pretending it doesn't exist and that all that's needed is information and education. (And stock photos of happy smiling people.)
  8. Crappy

    Crappy Senior Member

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    This touches a subject that is of growing concern to me. Depending on how ill you are, this subject can be of deadly importance.
    Before the discovery of XMRV, I think all these entities were stumbling for a direction, and many still aren’t convinced of the discoveries importance; and that is probably reasonable.

    I am most disgusted with our governments’ response.

    After that, I am disgusted with all these organizations who claim to be devoted to helping all of us here. What is bothering me is all the Ego’s that have to be accommodated. I don’t claim to know these organizations true motivations, but I would have to say, the patients well being does not appear to be the primary motivator, for many of them.
    Just a quick search for organizations that claim ME/CFS as their purpose for existence.

    Not-for-Profit Organizations (United States)
    CFIDS Association of America
    CFIDS Report
    CFS Knowledge Center
    Co-Cure ME/CFS and Fibromyalgia
    National Alliance for Myalgic Encephalomyelitis
    National CFIDS Foundation
    National Dysautonomia Research Foundation
    National Fibromyalgia Association
    National Fibromyalgia Research Association
    P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders
    Organization for Research and Advocacy
    Organization for Fatigue and Fibromyalgia Education and Research

    Not-for-Profit Organizations (U.K.)
    Action for ME
    Association of Young People with ME
    Blue Ribbon for the Awareness of ME
    CFS Research Foundation
    Invest In ME
    Irish ME Trust
    ME Association
    ME Northeast
    ME Research UK
    National ME Centre
    Network ME
    A Place For ME
    RiME — Research into Myalgic Encephalomyelitis
    Search ME
    25% ME Group
    Welsh Association of ME and CFS Support

    Not-for-Profit Organizations (Canada and Australia and New Zealand)
    Association quebecoise de l’encphalomylite myalgique
    FM-CFS Canada
    ME/CFS Association of Australia Limited
    ME/CFS Society (SA) Inc. (Australia, New Zealand, U.K.)
    National ME/FM Action Network (Canada)
    New Zealand ME Society

    Not-for-Profit Organizations (International)
    C.F.S. Associazione Italiana (Italy)
    CFS Italia (Italy)
    European ME Alliance
    Fatigatio (Germany)
    International Herpes Management Forum
    International Society for Complementary Medicine Research
    Intersitial Cystitis Association
    ME Platform (Netherlands)

    Not-for-Profit Organizations (Japan)
    Japanese Society of Fatigue Science
    CFS Network Japan (Japanese Association for Chronic Fatigue Syndrome)

    Others
    Phoenix Rising
    ProHealth
    EI Resource

    The list is not inclusive of them all. I can’t even keep track of them all! Let alone donate time and money to them.

    Wouldn’t it be a better use of resources for some of these organizations to begin consolidating in the interest of the patients? If they are truly working for the good of us, their Egocentric need for individual existence is draining precious resources.
    I am aware that most researchers want their name associated with a condition or illness in order to live in infamy.

    We have been neglected for close to 30 years, helping us should be the primary motivator? Failing to recognize this, costs everyone.
  9. jspotila

    jspotila Senior Member

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    I appreciate the thoughtful nature of many of the comments in this thread. The truth is that no organization of the size we have in the CFS community can do all the things people say they want: cutting edge research, lobbying for funding, treatment studies, medical services, awareness campaigns, physician education campaigns, disability services, wide span communications about all of the above (and in the way any given patient wants those communications to be done), and more.

    The Association cannot do all that. We are not trying to do all that. This is what we are trying to do:

    For someone to say he/she loves the Association's research program and BioBank, but that because we don't do all the other things we won't get that person's support is to set up an impossible standard. No single organization can develop all the competencies needed to do everything well. Not on the scale the CFS community can support right now.

    We're not perfect, and don't claim to be. We claim to be an organization focused on stimulating research and expanding public, private and commercial funding of that research. Communicating - with patients, researchers, policy makers, etc - and raising money support that effort. We are not waiting until we can do everything before we do something.
  10. Jackofit

    Jackofit

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    Why does the outrageously expensive CEO only talk through you and Cort, oh don't bother we already know. If she were forced to be honest she would fess up and resign because she mislead the patients, burned money on useless projects, colluded with the CDC and refused to do anything about the insulting name, a point which Marc Iverson resigned over and claimed correctly there would be no progress with "CFS".

    CAA has done many unforgiveable things, notably cutting off Elaine de Freitas funding when she discovered a retrovirus in 1991 and CDC wanted to shut her down, so CAA did the dirty work for them. What a nasty self-interested group CAA is. So stop with the tireless self-promotion of CAA, and do something that really helps the patients like fund the WPI and get rid of the traitor Kim.

    What CAA could have done as the primary advocacy organization was fiercely protest the CDC putting the damaging CFS label on the disease known around the world as ME, and fight for the official term ME reinstated, and connect ME to AIDS by focusing on the brain scan similarities and immune dysfunction. By fighting for the fundamental facts while it was a hot issue they could have engaged the already scared public to act for this disease too, and have researchers vying for funding, and fund Elaine's research, and could have discovered the cause 20 years ago. What we are living through could have all been history by now, but CAA was only thinking of its long-term survival.

    While AIDS people were fiercely ACT UP and got rid of GRID so quickly, CAA just wimpered about CFS as if they were helpless to do anything more than go along with the CDC coverup. That kind of betrayal has had devastating consequences, and is not forgotten. That Kim can continue to pay herself grandiosely for her continued incompetence is evidence of her unsuitability for the position.

    Here we are 25 years later and worse off in many ways because CFS did what they wanted it to, it has ruined our credibility. The only good in recent years have been the rise of the Invest In ME Conferences and at the same time the suprise of the WPI with its discovery of a retrovirus. If what little money we have to spare goes to WPI then they have the facilities to do research on a scale that CAA can only dream of and if CAA are not putting everything they have into WPI then once again we must conclude they are more interested in themselves.

    CAA is kidding themselves that they are now a research organization after their decades of incompetence at advocacy and their limited ability to focus on research properly because they have lost their patient base. The research organization we have dreamed of is the reality and magnificence of the WPI and CAA should be advocating all they can to ensure that funding gets to WPI, not competing with them. The danger is that CDC want WPI shut down, or at least their retroviral research shut down, so unless CAA gets in touch with reality fast they will be repeating history by doing the CDC's dirty work for them and stopping patients from getting treatment again.

    Wake up and stop trying to be something that you are not, go back to basics and advocate for the real name, a neuro-immune definition, and get WPI funded in every way you can because without WPI and our dedicated researchers we might as well all save ourselves the unnecessary suffering and injustice and end it ourselves. If enough of us did, that would be a protest everyone would hear! Grim, but true.
  11. Jackofit

    Jackofit

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    Why does the outrageously expensive CEO only talk through you and Cort, oh don't bother we already know. If she were forced to be honest she would fess up and resign because she mislead the patients, burned money on useless projects, colluded with the CDC and refused to do anything about the insulting name, a point which Marc Iverson resigned over and claimed correctly there would be no progress with "CFS".

    CAA has done many unforgiveable things, notably cutting off Elaine de Freitas funding when she discovered a retrovirus in 1991 and CDC wanted to shut her down, so CAA did the dirty work for them. What a nasty self-interested group CAA is. So stop with the tireless self-promotion of CAA, and do something that really helps the patients like fund the WPI and get rid of the traitor Kim.

    What CAA could have done as the primary advocacy organization was fiercely protest the CDC putting the damaging CFS label on the disease known around the world as ME, and fight for the official term ME reinstated, and connect ME to AIDS by focusing on the brain scan similarities and immune dysfunction. By fighting for the fundamental facts while it was a hot issue they could have engaged the already scared public to act for this disease too, and have researchers vying for funding, and fund Elaine's research, and could have discovered the cause 20 years ago. What we are living through could have all been history by now, but CAA was only thinking of its long-term survival.

    While AIDS people were fiercely ACT UP and got rid of GRID so quickly, CAA just wimpered about CFS as if they were helpless to do anything more than go along with the CDC coverup. That kind of betrayal has had devastating consequences, and is not forgotten. That Kim can continue to pay herself grandiosely for her continued incompetence is evidence of her unsuitability for the position.

    Here we are 25 years later and worse off in many ways because CFS did what they wanted it to, it has ruined our credibility. The only good in recent years have been the rise of the Invest In ME Conferences and at the same time the suprise of the WPI with its discovery of a retrovirus. If what little money we have to spare goes to WPI then they have the facilities to do research on a scale that CAA can only dream of and if CAA are not putting everything they have into WPI then once again we must conclude they are more interested in themselves.

    CAA is kidding themselves that they are now a research organization after their decades of incompetence at advocacy and their limited ability to focus on research properly because they have lost their patient base. The research organization we have dreamed of is the reality and magnificence of the WPI and CAA should be advocating all they can to ensure that funding gets to WPI, not competing with them. The danger is that CDC want WPI shut down, or at least their retroviral research shut down, so unless CAA gets in touch with reality fast they will be repeating history by doing the CDC's dirty work for them and stopping patients from getting treatment again.

    Wake up and stop trying to be something that you are not, go back to basics and advocate for the real name, a neuro-immune definition, and get WPI funded in every way you can because without WPI and our dedicated researchers we might as well all save ourselves the unnecessary suffering and injustice and end it ourselves. If enough of us did, that would be a protest everyone would hear! Grim, but true.

    Moderator: Deleted last sentence for offensiveness
  12. adin

    adin Administrator

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    Just a small correction, Phoenix Rising is a *Not* For Profit Organization and can very much use your donations and help.
  13. adin

    adin Administrator

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    I agree that at this point the CAA needs to take some radical steps. Like someone earlier in the thread said, they need to be MAKING the news, not reading it. It sounds like they need to give up on pure research at the moment and get in the game of becoming the ALF of the ME/CFS world. It'll lose them some points in the academic and government circles, but it'll certainly gain a *lot* of good, grim attention. Publicity stunts! Get into the national psyche!

    Why aren't they using some of the donations to help *research* oriented organizations and treatment clinics (like Dr. Klimas' Kendall Clinic) get their feet off the ground as an 'incubator'?

    Why aren't they offering scholarships to help connect financially insecure ME/CFS patients with disability lawyers, treatment clinics, and the money in for-pay treatment studies (i.e. ampligen).

    Give up on authoring the papers and become the incubator for a *movement*
  14. Cort

    Cort Phoenix Rising Founder

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    I just have to point out that this is an interpretation of how everything turned out that doesn't pan out in my opinion. The only org that ever funded Dr. DeFreitas was the CAA. You never would have heard of her name except for the CAA. Dr. Cheney got her interested in CFS and the CAA funded her work. After the CDC stopped doing research on that virus the CAA funded another study with her. In that last test she did - using patients she picked out - that she had been able to identify correctly before - she failed. Half the people she thought had the retrovirus were the healthy controls. That information, for some reason, never made it into Osler's web. Another lab that tried in the blinded study using her test was able to either. Neither was pharmaceutical company after spending 6 months or so - able to duplicate them. And the retrovirus she found in MS didn't pan out either - it was a tough field even for a good researcher back then - as it is now.
  15. Cort

    Cort Phoenix Rising Founder

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    Wonderful point Crappy - look at the opportunities we have to work together. Hopefully we will see some movement in this direction in the future. I think we will.
  16. Cort

    Cort Phoenix Rising Founder

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    Regain their mojo! Lose a few of those brownie points. The CAA has been great at garnering professional respect but you can be too careful......Give up a few of those brownie points - and reap the rewards..

    (Figures Adin would reach back to ALF - alien life form :). I must say I had to look him up http://en.wikipedia.org/wiki/ALF_(TV_series))
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Change CAA to MEAA will get us off your back and dollars flowing in

    I agree with Cort that this is a very hard disease for which to get funding.

    I also agree with whoever said that the reason for this is our weak public image (and not being aggressive enough with lobbying), which is due in large part to the name "CFS". CAA using ME not "CFS" is a cost-free move that would do a lot to reverse this and gain huge support from patients including me. If CAA wants to do something extremely easy and costless to shut us up (to a great extent) quick and get those dollars flowing in and help ME patients, just be the MEAA. This is a no-brainer. Just do it, PLEASE!

    I agree with Jackofit's words below.

  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We will never make progress in any reasonable time frame unless we focus most of our resources on advocacy including bothering the Congressional funding committees til they're really sick of us. We get $3-5M in NIH funding typically, as opposed to AIDS getting $3Billion, down from $15B in the 80s. Would most American HIV patients be living relatively "hale and hearty" normal lives if they continued to suffer in relative silence and to themselves call the disease Gay Related Immune Dysfunction Syndrome, or, more similarly to our slave name "CFS", they called themselves Gay Fatigue Syndrome patients? They would have to fund research for treatment themselves, like we do and they'd still be dying horrible deaths. We need to get up in Congress' and the media's grills! What's the worst case senario- i can't imagine it being any worse than it already is. The probably scenario would be we'd get a lot more media and public attention and some substantial funding increases.

    NIH is now calling it ME/CFS and taking it somewhat seriously in some ways now because of WPI and individual patients, not CAA.

    We need CAA as our leader. Please start leading in advocacy and I promise you from the bottom of my heart I will really support you and I think all the other 'negative' people on PR and elsewhere will suddenly become "positive people". I really do not want to fight CAA, i just find it necessary for now.
  19. Cort

    Cort Phoenix Rising Founder

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    I like it! We have to find a way to create inertia - to really get a foothold. God knows what the mindset of the bureacrats at the NIH and CDC that determine funding is about CFS - but my god it must be AWFUL...I'm not sure when the 1,000,000 person prevalence figure got locked in but I imagine that CFS is getting less funding now than when they thought it affected a 100,000 people.

    It's the same for FM, TMJ, instertial cytisus. When you put the CDC and NIH programs together and you compare how much funding per person CFS gets compared to fibromyalgia - we actually get more funding per person... This is a systemic level of bias against difficult to understand 'invisible' mostly female dominated illnessess. I mean what does Kathleen feel about it when 10's of millions of women suffer from disorders that are getting very little research..Does she know about this? Does she think about it?

    I thought Jennies post on MS was intriguing when she mentioned the attempt to form an institute because I think all these disorders fit together and they really should be in one institute -set aside for them. Its a dream - but that's 10's of millions of people and they should all be locked at together. There's VERY little attempt to translate findings from one type of disorder to another - and aside from looking at comorbidity there are very few integrated studies.

    I think looking at this as a systemic bias against a certain class of disorders could take us far and have us pick up strong allies in the fight. This the last series of neglected 'women's' disorders and its a big one!
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree Cort. Maybe i'm not in touch enough, but it seems to me that Fibro has even less advocates/advocacy/awareness- if you don't count the drug ads, though they have four times as many patients. wondered why this is.

    And good for CAA seeding pilot studies that are likely to get a lot more funding. I think we all need to move much more in this direction of doing "impact" studies and publications- funding things that can be leveraged and things that will make a big impact for us eg Lombardi paper, Jason's papers etc.

    incidentally, good for PR for incorporating ME into the site address and subtitle etc. And, of course, I think it would do a huge amount of good for us for no money if we went further and made the ME part more prominent and had it titled for example

    "PR,
    a ME/CFIDS [or ME ("CFS")] website
    Myalgic Encephalomyelitis/ Chronic Fatigue Immune Dysfunction Syndrome"

    We have to lead the change in nomenclature to ME. That is the ONLY way CDC, media and public will start calling it ME or ME/CFS.

    PR is already established as the go-to site and forums for ME, so i don't think it will hurt traffic to emphasize the ME name (as opposed to "CFS"). On the contrary, i think it will help the health of the site financially and otherwise as i think more patients will be able to get behind PR with this sort of leadership/ pointing the way for patients.

    Of course, I would really prefer to see "PR: ME Forums" with no "CFS" and hope at some time soon we can get to that point. Just cause CDC calls it CFS, doesn't mean we have to. In fact, if CDC is doing something, we should probably do the opposite! If everyone and every org starts calling it ME, CDC will have to call it ME or will look incredibly ridiculous.

    I bet MS patients didn't call themselves people with 'hysterical paralysis' just cause CDC or WHO was. And if they did, we can see in retrospect, this was a really bad move and passively contributed to keeping a lot of peoples' lives a living hell. Words have a lot of power, power that's being used against us. The cool thing is that it's just as easy to say ME as "CFS" and feels a lot better! We can start saying the words that will help us, not persecute us. It's easy and fun! :D

    (apologies as the above is off-topic. I looked for an appropriate thread to put it in but couldn't find one. If anyone wants to continue on this last topic, we should start another thread or find the appropriate old one.)

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