A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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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. mojoey

    mojoey Senior Member

    First of all, Thank you Parvo for using your precious energy to share your thoughts on this. That was the most nuanced yet inspiring piece on the CAA I've read in quite in some time.

    I'm re-posting the following from my facebook page http://www.facebook.com/profile.php?id=100001592712409. I may have borrowed bits and pieces from here, so I hope you guys don't mind:
  2. Cort

    Cort Phoenix Rising Founder

    I think you make some really good points mJoey and I appreciate your nuanced take on all this.

    I want to point out that with regards to this
    That it's my understanding that that money came from the CDC )and did not come out of their research budget) or from the CAA's coffer's.

    My understanding is that the CAA is focusing mostly on research now and that is where most of its money is going.

    Research discoveries can be as much a case of serendipity as well as hard work. Its not to the WPI's discredit that the discovery came about because Dr. Silverman asked them to look into it but to say the WPI was better or suggest they had more gifted researchers working for them than the researchers the CAA used in its grants is just not fair... Both groups have done excellent research and have utilized excellent researchers. Why use one as a bludgeon to beat up on the other? We have too few researchers interested in this disorder to do that. Its not like we have researchers clamoring to study people with CFS - quite the opposite.

    I do want to point out what was left out of "Osler's Web" - the last study, funded by the CAA, in which Dr. DeFreitas was unable to distinguish people with CFS from healthy controls using patients from Dr. Bell, just as she did in her first study. Why anyone would have continued on after that point is kind of unclear to me given that no one else had been able to duplicate her results. Her similar results in multiple sclerosis also failed the test of time! This is a difficult field that has tripped up even the best of researchers at times.

    Thanks for your balanced post!
  3. Otis

    Otis Señor Mumbler

    A leadership role in the BWG????

    Is the CAA taking a leadership role in the BWG?

    What does that mean, exactly? Yes, they are a member, albeit one that cannot offer a level of expertise, lab space or any other bloody thing that is critical to the work being conducted. So, what is the CAA DOING (ya know, a verb) there? They are not chairing the meeting and related activities, those roles are spoken for. They're not reporting anything to patients, even so much as "phase 2 is more complicated than expected, please be patient we haven't forgotten you."

    So seriously, how do patients benefit in the bargain? Whatever that bargain may be.
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Thanks so much for that info. I didn't know what the state of affairs was since the days of the "ME's All in The Mind" headlines that Jason quotes in "Politics Science and the Emergence of a New Disease" (which kind of ignores the body of knowledge about ME, but Jason's team stands up for us so I don't bother about that; I just add an article by Dowsett if I need to make that point). That's good to know. I will keep advocating for the use of ME immediately and do it with a clear conscience unless some other UK people pipe up to tell me differently.
  5. Francelle

    Francelle Senior Member

    Victoria, Australia
    Cort you made a couple of statements in your posts and I'm wondering if they have another deeper meaning? Do you know something? They are:

    How did that idea come to pass? Was it their cautionary stance on XMRV? I understand that it was upsetting (and a mistake in some ways) but it doesn't look it was such a bad way to go right now.”

    That is the big puzzle isn't it? How was a small lab able to do what all these other labs have not been able to do? I think we'll find out soon
  6. markmc20001

    markmc20001 Guest

    one thing missing

    If anybody from the CAA is watching and/or from the CFSAC. I have a simple suggestion that would help lend credibility to the efforts your organzations in the minds of the patient community.

    Please list on you websites goals, activities, and results(with expected completion dates) related to:

    1) the efforts involved in finding treatments for CFS/ME

    2) Efforts for diagnosing CFS/ME

    3) efforts for defining if XMRV is found in CFS/ME patients. (Dr illa singh had some ood ideas on this one)

    4) other productive activities

    A comments section below the website list would allow the CFS/ME community to monitor and comment on the progress.

    Without an effective (and transparent) way of tracking activities and results there is no way to know if anybody is doing any good.
  7. jace

    jace Off the fence

    Originally Posted by Cort
    The Civil Rights movement and the ACT UP people did not have the internet, the community online, that we now have. They did have healthy members helping them, and after all the mixing up of definitions to the point where a depressed patient can be considered, by the Oxford and Reeves (Empirical) definitions as having ME/CFS, they also had far more clarity.

    I think this is what the CAA and Phoenix Rising need. Clarity. Focussed anger. An end to apologist texts trying to be all things to all people. We all have to stop pulling our punches, and tell it straight, all the time. If that creates enemies, so be it. Being effective will always upset some.

    • Use the Canadian Consensus Criteria - Fukuda was the first knife in the back. Where is post exertional malaise (or meltdown, as I prefer to call it) in Fukuda? Why does Fukuka exclude tests to confirm an ME/CFS diagnosis?
    • Never use the nigger name, always preface with ME eg ME/CFS until such a time as the physical cause of this disease is universally recognized.
    • Support and fund the WP1
    • Give no credence to somatoform models of ME/CFS

    PS I just want to thank Parvo and second every word she wrote. Respect. Rest up, now. We need you.
  8. jspotila

    jspotila Senior Member

    Lots of questions, more than I can answer, but I will offer a few answers.

    I am sorry to hear that you think I am offering "boilerplate disclosures" or doing damage control. I have answered as many individual questions as possible, frequently disclosing new information here or more details about topics. I do my best to respond to private messages and emails as well. Some questions I simply can't answer because of confidentiality restrictions. But I do listen, digest, learn, and carry what I learn back to the Board meetings. And Board members listen to what I (and others) have to say about the patient community or parts of the patient community. But what is said in online forums is not the only source of relevant information for the Board, nor are these topics the only relevant topics. The Board strives to make decisions considering as many angles to an issue as possible.

    The Board made the decision in 2008 to adopt the new strategy: To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. We made the decision at that time to stop conducting general public awareness and education activities (we still conduct patient education activities like the webinars). We believe, and our donors and others in the patient community told us, that research is the key. Research will provide the evidence that is needed for more effective public awareness and education campaigns.

    It's been discussed repeatedly on PR and other forums that the Association has funded millions of dollars in viral and retroviral research. The decision to stop funding DeFrietas was made on the recommendation of a research committee (made up of researchers). The Association's current grant-making model is extramural - we ask for applications from outside researchers and conduct review for strategic and scientific merit. I can't comment on applications that were not funded, but I can say that the Association has always striven to find pilot projects that needed seed money in order to secure funding from larger sources (just as Dr. Broderick has done). This means looking for new or even risky ideas, and I think our research record speaks to the breadth of topics the Association has funded.

    Dr. Vernon is a member of the Blood Working Group, and Ms. McCleary is a member of the AABB's XMRV Task Force. Neither of these are "leadership" roles in the sense of running the committees. However, through participation in these committees, Vernon and McCleary have been able to educate members about CFS, represent the needs and perspectives of the patients, and report information back to the community when able. I hope everyone understands that there are strict confidentiality requirements on both committees, and the Association has never violated those restrictions. But we have provided extensive reports when information is made public, and drawn on our contacts with the committees to create resources such as the extensive Q&A document in September. The educational information distributed at blood banks was created with the Association's input. And we have been able to arrange events like Dr. Louis Katz's webinar on XMRV and blood safety, and the just announced webinar on the Blood Working Group Phase II results (that thread is here).

    There are a variety of reasons. One, to be frank, is the way both my statements and the Association's communications are picked over with a magnifying glass and fine-toothed comb. It takes time to be as specific and clear as we can be so that when statements are read, they are understood as much as possible. Readers have every right to analyze, question and criticize statements made by organizations, and it forces organizations to be very very clear. Multiplying that effort by 15 Board members does not make much sense, especially if one or two can do the same. I seek clarification and information when needed, and do my best to be clear.

    Board members have many responsibilities - raise money, oversee the organization, set strategy, etc. And our Board members can be described by one or more of the following: housebound by illness, caretaker of a patient, extensive travel for work, job requiring 60+ hours per week, parent of young children. I have dedicated much time and effort to participation on Phoenix Rising and Facebook, but not every Board member has that time. And we need our Board members to focus on their primary responsibilities to the organization. As I said above, I do my best to report back what I learn online to the Board.
  9. mojoey

    mojoey Senior Member

    Hey Jennifer,

    I appreciate you taking the time to respond to some of my points.

    Please don't get me wrong: I do believe you are earnest in your responses. I believe you try to tell us what you can, but due to confidentiality agreements or because you don't want to jeopardize the decision-making abilities of the board, your responses end up sometimes (no not always) leaving an impression of quelling a fire instead of addressing the kindling. Not knowing what sort of direction the CAA took on XMRV research was such an example a few months ago, but now I see that the association is earnestly trying to corroborate (or refute) the link with further evidence. And of course, I understand you are just one board member which funnels a disproportionate amount of public opinion onto you. Basically what I'm saying is: this isn't personal. I think the source of my complaints are structural in nature: the lack of engagement in general between the whole board and the public, not only online (although that probably be the best bang for you guys' energy and money) but via market research. Perhaps you have done such polling, and I'm just not aware of it, in which case please correct me.

    Every time these threads pop up, hotbutton key phrases gets brought up to skew opinions of the Association's current work: Peter White, CBT/GET, Elaine DeFreitas (widely considered our Joan of Arc whether or not that reputation is warranted). Personally I understand that there has been a bunch of turnover in the Association and we need to focus on the present. No this doesn't mean that I think that mistakes should be ignored, but I want to see whether lessons have been learned and not harp on the past for the sake of harping. Cort informed me that the "faces of CFS" campaign and other education & awareness campaigns were all funded with government grants. I know the "faces" campaign was, but I wasn't aware the other education & awareness campaigns were exclusively tied to grants. Can you please shed some light on this? (I would comb through the financial statements again, but that is really beyond my energy allotment right now--my last foray when I posted comments under pen name "Joseph Chang", created because of surveillance during a disability lawsuit not to mislead anyone, crashed me pretty hard).

    I know a lot of people take issue with the CAA's approach to advocacy. I do too, but I also believe that no organization with 8 people and under $1 million in donations last year can fund substantial research, run a full-fledged website, send out a monthly chronicle, rent out an office, and be our greatest hope for ACT-OUT advocacy. Adam Smith had it right: we need to stick to our competitive advantages and put our full weight behind them: specialize specialize specialize. I would love nothing more than to see the MCWPA or another organization become our ACT-OUT representation.

    I appreciate that you changed your mission statement in 2008 to stimulate more research, and I would love nothing more than to see that renewed mission be cast in stone this time.

    Thank you for clarifying on the role of Dr. Vernon.

    And this is off-the-cuff: I really hope to see the WPI and CAA collaborate. When I look at the two orgs, I see unique competitive advantages and rife potential for synergy. Obviously I'm not privy to a lot that goes on behind the scenes, but I also know that power players can get caught up in what goes behind the scenes and lose sight of the big picture all too easily. I truly don't believe most patients want to see the CAA go away; no quite the opposite: I think they want to see them lend their considerable political and financial weight behind the movement and at least see it through. And it's not just about XMRV: if that doesn't pan out, I look at WPI and I see a focus on immunology that works seamlessly with the research that the CAA has funded. Of course, you might be shaking your head at my naivete and directing my whimsical wonderings to a parallel collaborative universe. In which case, I would still love to know why.

    I'm trying to filter through the pathos to get at the hard facts, and threads like this are very helpful to this end when people come out of the woodworks to respond.
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Actually, there have been a couple of methods of determining subsets proposed. Nobody has bothered to try to replicate them so we don't know if they're verifiable, but there are indeed possibilities. There's no reason under the sun why we shouldn't be campaigning to replicate some of these studies:

    Kerr et al. have written three articles on their genomics approach

    Kerr JR, Burke B, Petty R, Gough J, Fear D, Mattey DL, Axford JS, Dalgleish AG, Nutt DJ. "Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes." J Clin Pathol. 2008 Jun;61(6):730-9. Epub 2007 Dec 5. PMID: 18057078

    Kerr JR. "Gene profiling of patients with chronic fatigue syndrome/myalgic encephalomyelitis." Curr Rheumatol Rep. 2008 Dec;10(6):482-91. PMID: 19007540
    Zhang L, Gough J, Christmas D, Mattey DL, Richards SC, Main J, Enlander D, Honeybourne D, Ayres JG, Nutt DJ, Kerr JR. "Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis." J Clin Pathol. 2010 Feb;63(2):156-64. Epub 2009 Dec 2. PMID: 19955554
    This does go along with Dowsett's assertion that only enteroviral infection counts as true ME and other kinds of infections leading to similar symptoms are different diseases. I don't have a huge issue with whether we say different diseases or different subtypes (although different subtypes seems more convenient to me among the community of those of us with long-lasting disease and PEM) as long as we make some progress towards understanding and treating our disease(s).

    Then you have, of course, Natleson et al.'s symptom-based analysis (and Kerr et al. are saying their findings correlate with symptoms so we may be looking at some of the same sets actually).

    Janal MN, Ciccone DS, Natelson BH. "Sub-typing CFS patients on the basis of 'minor' symptoms." Biol Psychol. 2006 Aug;73(2):124-31. Epub 2006 Feb 10. PMID: 16473456

    Then, of course, you have this little matter of the Fukuda mandate:

    Please notice that presence/absence of psychiatric and medical conditions is mandatory, as is level and length of fatigue and level of functionality.

    Having followed the MANDATE of Fukuda would have saved us a lot of grief.

    Why is no one insisting on this at least?

    Jennifer, please bring this up with the CAA board ASAP (stratification mandate of Fukuda, and the subset possibilities that exist and require replication studies).

    That the CDC would not follow their official definition (and not be asking/reminding outside research community to do this as well, and including it prominently as part of the definition) is outrageous and unconscionable. This goes for use of Reeves inclusion crieteria, too. The best definition approach is to switch to something which more properly defines ME/CFS, but the CDC should AT LEAST follow their own official definition!!!!!

    Of course, we can try to inform this stratification info with later research (such as that the Chalder scale is inappropriate for severe lengthy disease, and maybe with other items needed to add to the mandatory list, etc.) In fact, Fukuda did say later research should be informative:

    Yet the CDC's website recommends the exact same set of tools as Fukuda did. There has seriously been no progress that they have noticed since 1994? No progress at all in 18 years? Not even these?

    Whistler T, Jones JF, Unger ER, Vernon SD. "Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects." BMC Physiol. 2005 Mar 24;5(1):5. PMID: 1579042
    Viral Exanthems and Herpesvirus Branch, Centers for Disease Control and Prevention, Atlanta, GA 30333
    Cameron B, Galbraith S, Zhang Y, Davenport T, Vollmer-Conna U, Wakefield D, Hickie I, Dunsmuir W, Whistler T, Vernon S, Reeves WC, Lloyd AR; Dubbo Infection Outcomes Study. "Gene expression correlates of postinfective fatigue syndrome after infectious mononucleosis." J Infect Dis. 2007 Jul 1;196(1):56-66. Epub 2007 May 24. PMID: 17538884
    School of Medical Sciences, University of New South Wales, Sydney, Australia.
    Sorensen B, Jones JF, Vernon SD, Rajeevan MS. "Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome." Mol Med. 2009 Jan-Feb;15(1-2):34-42. Epub 2008 Nov 10. PMID: 19015737
    Division of Viral and Rickettsial Diseases, National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, United States of America.

    And we must insist upon replication of existing proposed subgroups and further development of subgroups as well. This is the only way we are going to get proper treatment for individuals.
  11. Cort

    Cort Phoenix Rising Founder

    I didn't mean to imply that they are taking a leadership role - they are there - they are connected in there. That's all.
  12. Cort

    Cort Phoenix Rising Founder

    By that I just mean that I think we'll have the answers soon. I found Dr. Mikovits statement today that they culture for what, 3 weeks, while the others have cultured for half that time interesting..that could settle things right there.
  13. Cort

    Cort Phoenix Rising Founder

    What can I say, Jace - I agree.
  14. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    jspotila said: CAA plans to
    sounds like a very good idea.

    Otis said:
    This is it for me in a nutshell. Anything less than "all in" is imprudent and inappropriate imo.

    Marty said:
    I think this piece by Marty is very insightful. 5,000 (according to Komoroff) articles in peer reviewed med journals showing frank biological pathology has served to only somewhat improve public perception of us and has done nothing to change NIH and CDC's mistreatment of us (i would attribute the ostensible change in attitude emanating very recently from NIH to the efforts of WPI and individual patients). To me, this clearly shows that CAAs mission of focusing on research is misguided. I think we've got to put the majority of our resources into raising hell. We ideally should be holding our members of congress more accountable. HHS will never help us unless forced to do so from above (congress). i'd welcome any suggestions as to how to do this from Marty or others. Perhaps organizing letter writing to the house and senate committees responsible for CDC and NIH; other suggestions?

    I agree strongly with parvofighter too on the hotbutton issues. CAA should be funding studies on mortality in ME and how about the extremely strong connection between ME and very rare lymphomas?- there has never been a real study on these topics!! What about looking at "CAV", the defreitas retrovirus, again with hopefully advanced tools we have now? what about funding Lipkin or someone like him to do the type of research the NYTimes said he does isolating common virus dna and rna from sufferers. NY Times claimed his lab can do this in a few days. I think CAA funds some great studies, but i think i has to be even more focused on studies that will have high-impact on our advocacy efforts (and finding a cure).

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