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Suzanne Vernon Speaking in Colorado--Any Questions You Want to Ask?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mya Symons, Oct 10, 2010.

  1. jspotila

    jspotila Senior Member

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    As much as I love to express my opinion, I think it is not appropriate here. My views may or may not be the majority view of the Board. My views may or may not change as a result of Board discussion. It is a basic principle of good governance that the Board discuss an issue fully, then vote. The majority view is then supported by ALL Board members, regardless of their original positions.
  2. garcia

    garcia Aristocrat Extraordinaire

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    Jspot, are you here as an individual with ME/CFS, or a representative of the CAA?
  3. mojoey

    mojoey Senior Member

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    I understand that your view may not be the majority of the board. i would truly appreciate it if you didn't take me for an idiot here. I understand corporate structure, but you're posting here as a board member and a person with ME/CFS, so I would like to know your opinion regardless of eventual action. That is unless there is a rule against non-profit board members voicing their individual opinions on matters to be later voted on at board meetings.

    Also you didn't answer my other question: is the CEO not allowed to voice her opinion on a matter decided upon unanimously by an outside organization? If she is, I would still like to know if Cort or you got any wind of it.

    I'm asking not to scrutinize. I'm asking because this unfortunately was the best announcement to come out of the CFSAC conference, and I'm trying diligently to gauge if the CAA is considering go one step beyond a hybrid name that seems to be a consolation prize given to patients to shut us up. In my unsolicited opinion, "fatigue" needs to be permanently spliced from any name for this illness because it's utterly inadequate & it connotes malingering.
  4. jspotila

    jspotila Senior Member

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    Mojoey, I make every effort to be respectful to people and answer their questions. Your comment that I "take you for an idiot" is inappropriate.

    I am here as an individual, not at the request of or as representative of the Association's Board. Even so, there have been times when readers have not made the distinction. I am choosing to not share my opinions on the CFSAC recommendations, especially when issues of Board policy are involved. In my judgment, this will help avoid misunderstanding and misinterpretation.
  5. urbantravels

    urbantravels disjecta membra

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    I find personal attack and insulting language toward jspotila (a member of this forum,) in what seems to be a campaign to call her personally to account for numerous perceived shortcomings of the CAA, inappropriate for this forum.

    Is there some reason why jspotila should be *forced* to reveal her personal views on any subject, any more or less than any member of this forum? Don't answer this question with a lot of angry defensiveness about how we are all "entitled" to know her views, because we are not entitled to any such thing. I wish one tiny fraction of the energy spent attacking the CAA on these boards would be directed toward something more productive.
  6. mojoey

    mojoey Senior Member

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    I wasn't clear on that (you being here as purely an individual) because you've responded to questions in the past on behalf of the CAA. Ironically, this particular question was directed more to you as an ME/CFS patient that happened to have a strong voice in the CAA as opposed to you the board member. Of course, it is your choice to answer or not answer regarding your opinion and I respect your choice.
  7. mojoey

    mojoey Senior Member

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    No one is forcing her to reveal anything, but I think I am entitled to ask. It is her choice to be a presence on this forum; no one is forcing her into dialogue with any of us. And like I said, I respect her choice to not answer.

    But since you mentioned accountability, I think the reason why there has been a growing uncertainty/tension/sometimes hostility toward the CAA is that there are very few ways to keep the CAA accountable for acting appropriately on behalf of the patients that has donated nearly $4 million to the organization over the last 3 years. There is no annual shareholder meeting to vote board members in or out or vote on other important matters. Instead, the patients that donate money to the CAA are expected to give them the benefit of the doubt and just hope they do what we collectively would do for ourselves if we had $1.3 million dollars in donations (this doesn't include gov't grants) a year. Compared to buying the stock of a public company, investing in a non-profit on which many of our hopes for advancement are pinned is a huge risk, and I think this risk for moral hazard (the likelihood of CAA management not acting in its donors' best interests) is what is engendering much of the Q&A directed toward the CAA and jspotsila, a board member that has made herself accessible in public forums. However, I do not see personal attacks toward Jennifer. My asking her not to consider me an idiot is not a personal attack on her, but rather a request for her to give me straight answers if she does intend to answer.

    With that said, I'd like to know what patients here (including members of the CAA) think of using market-research-derived benchmarks we can use to keep the association accountable. Patients have stated here and elsewhere that we would like to know the CAA's position on research, the name change, and other important matters in the future. If for example, you poll patients and the vast majority say they want ME in the name and the CAA's board decides on policy that doesn't reflect this collective desire, I think it's fair to say that the the CAA is not acting on our behalf. The same goes with research: if they polled us on research and the majority of patients said that they want a minimum of 50% of donated funds to go toward research and 25% to go toward retroviral research, and then missed this benchmark, patients could look at this information and decide to continue or discontinue donations to the organization.

    So I think the solution to accountability is to have benchmarks of performance related to the mission statement (for CFS to be widely understood, diagnosable, curable and preventable; and to stimulate and invest in research) that are decided on by polling donors. Board meetings would be re-designed so that board members that represent the assembly (us) can decide on how best the organization can fulfill these benchmarks. As currently constituted, board members decide on matters internally without any official input from us. I think using concrete benchmarks is really the only way that we patients can have any way of quantifying on a consistent and continuing basis how appropriately the association is acting on our behalf.
  8. Dr. Yes

    Dr. Yes Shame on You

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    Many excellent points by mojoey in this thread; I would like to expand on some specific parameters of performance for which we need to be able to hold the CFIDS Association accountable; perhaps these will provide some necessary clarification to the community of the Association's stance and viewpoints, and also help us develop benchmarks for its performance in both its research and advocacy capacities.

    The CAA must be accountable not only for economic return of investment in the abstract, but for the impact on patients and their families of the research definitions it employs, the specific philosophical direction of that research, the literature it puts out, and of its past and future attempts to educate the medical community (such as online courses for doctors, the last one being in key areas both uninformed and potentially harmful in its embrace of unfalsifiable and otherwise scientifically questionable psychological and rehabilitative concepts).

    Given that Suzanne Vernon, their Science Director, was a co-author of the CDC's deeply flawed "Empirical Definition" for CFS, and given her favorable references to psychosomatic interpretations of CFS in a past research network proposal (discussed elswehere on this forum) and past research collaborations with CDC scientists who have consistently psychologized our illness, the CAA has a responsibility to provide a clear statement from Dr. Vernon explaining her views on the role of psychological factors in creating or perpetuating any of the symptomology of CFS. This should include her own, and the Association's, view on "kinesiophobia", or fear or activity, which the CAA's Medscape CME attributed to many CFS patients. It should also include her current view on the utility of the "Empirical Definition" of CFS, taking into consideration the many criticisms levelled against it (most prominently by Leonard Jason) and her assessment of her own role in creating it.

    Given that the CAA has consistently promoted CBT/GET and even an article (quickly pulled after criticism on this forum, by the way) by Alex Howard which clearly stated just part of his views of psychological causation of CFS, the CAA has a responsibility to provide a clear position statement on (1) the role of psychological factors in creating or perpetuating any of the symptomology of CFS, (2) CBT, the Lightning Process and other "mind/body" treatments offered for CFS; (3) whether treatments/ therapies with limited or zero scientific validation or basis will be promoted (including being described in uncritical pieces) in any way by the Association; (4) the Association's method for determining the merit of treatments or therapies it will actually endorse, especially CBT and GET, including whether that method will incorporate thorough analyses of objective research and patient surveys on the efficacies of these therapies that make them worthy of such an endorsement to the patient community and to our doctors.

    Given that the CAA has consistently promoted GET and related forms of gradual exercise increase for patients - sometimes on the advice of a few consulting physicians whose views are not universal among ME/CFS specialists - the CAA has a responsibility to provide a clear position statement of activity and exercise recommendations in ME/CFS that addresses the concerns of clinicians and patients whose experience contradicts that of those who endorse GET/ exercise in general for people with ME/CFS. This position statement must include a scientific justification for this position, and an analysis of all relevant research findings on the subject - not just those that find GET beneficial.

    Given the questionable material the CAA has presented in the past regarding severely ill ME/CFS patients, or the general lack of information and focus on such patients at all, and given that these patients represent a significant but grieviously underreported percentage of the patient population, the CAA has a responsibility to (1) investigate and document the epidemiology, clinical description, and unique needs of this population - something that has been done in the UK but not in the US, (2) provide more information and focus on this group for the patients, their families, and especially for clinicians, so that the segment of the community most vulnerable to physical damage receives some degree of protection and advocacy; (3) re-examine the Association's promoted literature/ guidelines to clinicians to ensure that it is adjusted to unambiguously document the often unique limitations of this group of ME/CFS patients.

    I would also argue that the CAA, as an organization soliciting funds for a research program, should clearly state guiding hypotheses of that program, including its current model or models of ME/CFS causation and pathophysiology that inform the development of its research program, and upon which the selection of studies to fund is based. Given past and especially recent advancements in ME/CFS research, the relative role of pathogens in those hypotheses/ models, and the degree to which the research program as a whole is or is not guided by a search for clues to pathogen involvement, should be unequivocally stated. Last but by no means least, the degree of the Associations's commitment to clear clinical and research definitions of ME/CFS should be stated. Any research funded by the Association should be required to incorporate use of the Canadian Consensus guidelines (adapted appropriately for research purposes).
  9. mojoey

    mojoey Senior Member

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    Thanks Dr. Yes. I agree that there are many ways to keep a donor organization accountable beyond economic return on investment. The takeaway here is that currently, none of them are being used, and as has been discussed elsewhere, the donors to this organization currently have no leverage on the association's actions beyond adjusting our own individual donations or convincing small pockets of patients to adjust their donations.

    I hope that the CAA will address this concern and discuss the usage of donor-decided benchmark soon, and I certainly welcome any thoughts jspot has on this. I believe the CAA has a lot to gain here and has a huge opportunity here to respond to its constituency, and I hope it doesn't regard the more opinionated voices here as marginalized minorities. Many patients simply don't have the energy or cognitive capacity to express their discontent, and even more aren't aware that the CAA spends more of its annual funds on salaries than on research. There is a reaction for every action, so consequences for unaccountability might be delayed because you're representing such a disabled constituency, but they will certainly come. That is not a threat, but simply an economic and social reality. An individual that buys a few stocks in a public company technically has de jure proxy vote but de facto has no sway whatsoever. Similarly, a CFS patient that donates $25/year doesn't engender much accountability but if this "marginalized" view happens to correspond with the views of a 100k annual donor, sway can certainly be effected.

    This is a huge opportunity to respond to growing dissatisfaction by doing what really isn't that difficult technically (conducting a poll that costs maybe 20k and changing the board structure toward the pursuance of performance benchmarks decided on via polling) but certainly goes against the grain of the "old guard" of CFS (research, advocacy, education, treatment) and egos that think they know best. Change is never easy, but only fluid organizations can thrive for long in a fast-changing environment, which is certainly where ME/CFS research has been post-Oct 2009.
  10. Cort

    Cort Phoenix Rising Founder

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    I have to say that lots of non-profits do not have a membership voting structure. A couple of years ago there was a huge battle in the Sierra Club over whether to aggressively come out against illegal immigration in the US. It was very ugly and time consuming and it almost tore the organization apart; its now held up as a case study of how difficult membership organizations can be to run.

    The CAA's case is very simple; people vote with their money. They give it if they think the CAA is doing a good job and they don't give it if it isn't. I don't see how that's risky - if people feel that the CAA produces they'll give them money; if they don't then they won't give them money in the CAA will go out of business.
  11. Cort

    Cort Phoenix Rising Founder

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    I think its time for a poll!

    The name change is an issue that will help people decide on whether to contribute to the CFIDS Association. It's like anything else. I think the CAA should do surveys on what patients want but I also think that for some things they should rely on other factors. For instance, the CAA's Research grants go through a rigorous peer review process and lthen through another peer review. I think that is a better process than stating that we are going to devote X dollars to retroviral research no matter what kind of grant applications we get.

    The CAA can (and I think it does) indicate what kinds of grants it is most interested in but after that I think they should let the researchers decide which are the most rigorously written and most likely to succeed grants.

    I think surveys of the patient community are a great idea for any support organization.

    I think if CAA did some things their support would go up significantly. One of those things would changing the name to ME/CFS and I hope they do it. In fact I think they'll probably get hurt if they don't do it. Now's the time :D
  12. Cort

    Cort Phoenix Rising Founder

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    You know how when you put sunglasses on the world looks differently? Dr. Yes has his own set of sunglasses and his sunglasses pick up some features and completely bury a whole set of other ones. His filter appears to be that the CFIDS Association is focused on a behavioral interpretation of chronic fatigue syndrome. Anything that doesn't fit that filter is discarded and everything that does is magnified. What he, in my opinion does not have, is anything approaching an objective view of that organization.

    In Dr. Yes's world one citation out of hundreds at the end of a paper that is suspect makes the author suspect (never mind the hundred others that were perfectly fine) and he will - as he did in a former post, as I remember, pick out that one, flag it, announce to the world, etc. while ignoring the hundred others that were perfectly fine. Never mind that the paper made a case for a physiological interpretation of CFS - there was that reference.

    Never mind that the research program that Dl Vernon runs (and that the fate of the organization now largely depends on) entirely devoted to physiological research. Never mind that the Medscape treatment review program only mentions Kinesophobia once and in reference to a small percentage of the CFS population and that it focuses on many physiological treatments for the disorder. Never mind that the CFIDS Association's take on the empirical definition has been explain and is explained in the FAQ section of the website - as has been noted several times in this forum. (It is emphatically against using it)

    Never mind that a simple overview of the major physicians websites on CFS indicated that all of them view small amounts of exercise appropriately done in the right circumstances as helpful for CFS. Nevermind that no one is recommending anything other than very small amounts of exercise and that all 'exercise' must not produce a flare. Nevermind those more delicate points....

    Nevermind that the CAA's Medscape course does, as I remember, address the needs of severely ill patients/.

    Nevermind the fact that the CAA has consistently funded research into pathogens
    including most recently into Epstein-Barr virus, endogenous retroviruses and pathogens in the stomach. That does not fit into Dr. Yes's filter (neither does examining their past and present research program, apparently).

    Never mind the fact that the CFIDS Association 'promotes' all sorts of therapies for CFS, most of which have nothing to do with behavioral therapies. Nevermind the fact that Kim McCleary has publically stated that too much CBT study has been done. ( Never mind the fact that viruses can effect autonomic nervous system functioning - which is one area of the body that we do have some control over - never mind parsing all that stuff! Never mind the fact that Alex Ross's theory is partially based on oxidative stress. Just like with 'exercise', mind/body stuff is wrong, completely wrong all the time and should never be mentioned...Never mind the fact that Lenny Jason's work indicates it can be helpful in some patients)

    Never mind all that; if something doesn't fit Dr. Yes's interpretation of the CFIDS Association as a CBT/exercise promoting organization that is not interested in pathogens or XMRV - that will not appear in his posts. :)
  13. Angela Kennedy

    Angela Kennedy *****

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    I don't think that's the problem Cort.

    The issue is that by allowing an illogical, unscientific theory driven substantiation-lite belief that ME/CFS is a psychogenic illness to insinuate itself into state medical deliberations on ME/CFS and not protesting at this, indeed reproducing it, has turned the CAA, indeed many of the British charities/organisations as well, into a curate's egg - the 'good in parts' becomes irrelevant, because of the harm done by an unscientific approach to this illness that is the psychogenic explanation for ME/CFS patients say, that fall into a 'Canadian' diagnostic category, and the CAA's engagement with that and failure to object to it.

    The flaws of the psychogenic explanation are the elephant in the room, and the lack of clear logical objection to it from the official agencies/advocacy organisations for so many years, indeed the positive engagement with much of it, is now inexcusable.

    All ME/CFS - related agencies and organisations are responsible for standing up and objecting. Only a few are stepping up though.
  14. gracenote

    gracenote All shall be well . . .

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    The world does look differently to those who are severely disabled by ME/CFS and who have lost all ability to function normally, who have lost their homes and any potential means of ever supporting themselves, who have become isolated and abandoned by family, friends and their government. The CFIDS Association does not speak for them.

    If this organization, who continues to say it advocates for us and continues to solicit our donations, cannot speak for the weakest among us, who will?

    Cort, I think your insinuation that Dr. Yes has a skewed vision because of his very precise concerns is insulting.

    Instead of continuing to spend such enormous efforts defending the CFIDS Association for not being that bad, your efforts would better serve all of us if you were to insist that these "features," which have been brought to your attention repeatedly, be immediately removed and a strong statement made against them.

    I hope the CFIDS Association does NOT change its name to ME/CFS until they begin to speak for all of us and begin to draw a clean and distinct line against the damage the CDC and its misguided "research" has done to us.
  15. mojoey

    mojoey Senior Member

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    Hey Cort,

    Thanks for your response. I'm glad to hear your feedback on the poll and i hope the CAA responds. Perhaps someone will ask this question on their facebook page to them directly.

    I do think the poll should quantify the amount of funding to go to research. Just because not every dollar would be allocated to grants that year doesn't mean it can't eventually be allocated to a grant. That money would simply be earmarked for later use. Gov't organizations have set budget amounts for specific diseases and earmarks for specific projects, so it wouldn't really be a novel idea. Polling patients only on the type of grant to be given out is rather vague and hence full of wiggle room on amounts -- they can easily do the bare minimum and filter the remainder over to their salaries or other areas that donors don't necessarily care for excess expenditure. I'm not saying they necessarily would, but rather that this type of benchmark wouldn't achieve the specificity of spending that patients might prefer. I personally see no problem with polling patients for hard caps (i.e. % of funds toward salary) or minimums (i.e. % of funds toward research grants) on spending.

    You're absolutely right in that many non-profits don't have a voting structure. I wasn't implying that they did, but rather using the comparison to a public company to shed light on the comparative risks involved in donating to an organization that has a near-monopoly on ME/CFS representation in public and political arenas. I think the "non-profit" label is generally very deceiving and many patients that donate to the CAA are unaware of the nearly nonexistent amount of input they have on CAA decisions.

    I didn't suggest that they change to a for-profit structure, but based on your agreement to the poll idea and your support for more research, I take it that you agree accountability can stand to improve.
  16. CBS

    CBS Senior Member

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    It is very much my impression that at the moment the CAA, to both its credit and its detriment, is trying to represent the entire spectrum of CFS patients; ME/CFS (Canadian Consensus) through the chronically fatigued (Revised Fukuda - predominantly depressed).

    If the CFIDS Association were to change its name to the ME/CFS Association, I too would hope that it not do so until after it had drawn a clear distinction between the various diagnostic cohorts and focused its efforts to educate physicians, the public and governmental agencies (advocacy) about specifics of ME/CFS.
  17. akrasia

    akrasia Senior Member

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    Well, Kim McCleary by using her "inside voice" got us a place at the table with the NIH and CDC grownups, but Never Mind that they've been spitting in our soup for decades while the CAA smiled and took another spoonful. Never mind that they temporized with a variety of obnoxious and destructive characters like Stephen Straus, William Reeves, and Peter White, allowing their voices to appear equivalent to those like Dan Peterson or Nancy Klimas. Never Mind that without the appearance and breakthrough impact made by the WPIs findings, we would be well on our way to inclusion in the DSM V and vulnerable to the bid to change the ICD codes. Never Mind that the CAA has never been capable of framing the seriousness of this illness or representing the calamity many of us find ourselves in.

    The CAA has conducted itself as if M.E. were just another disease, another illness, like Parkinsons or Diabetes. This has never been the case. From the start we have been a pariah, marginalized, ridiculed population that has experienced the worst sort of exclusion and misery; no doctors, no treatment, abandonment by friends and family, impoverishment, often either homeless or perched on the edge of homelessness. Show me how the CAA has represented or addressed this ongoing calamity? They needed to adopt an adversarial posture, not necessarily one like ACT UP but one that was articulate and shrewd, and showed some backbone. They should never have given an inch to the psychobabblers. This could have been done.

    Cort, everyone has filters, yours, regarding the CAA, have been both myopic and rose-colored.
  18. froufox

    froufox Senior Member

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    Very well said Gracenote, I wholeheartedly agree with you.

  19. George

    George waitin' fer rabbits

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    Humm, here's a really stupid question, does anybody have any information on what Susan Vernon's talk was about?
  20. Cort

    Cort Phoenix Rising Founder

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    That's not true either - the CAA has never stated that CBT or any behavioral therapy or exercise or whatever is a cure for CFS and they've been very careful to state that it has only limited effects and they vigorously protested the CDC starting to do CBT studies. That sounds pretty mild to me and I think you're putting words in the CAA's mouth.

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