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Blog: Discussion of Suzanne Vernon's Response to Criticisms

Discussion in 'Institute of Medicine (IOM) Government Contract' started by NotAllInMyHead, Oct 8, 2013.

  1. NotAllInMyHead

    NotAllInMyHead

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    http://thoughtsaboutme.com/2013/10/...isagreeing-with-experts-and-patient-majority/

    justinreilly and beaker like this.
  2. slayadragon

    slayadragon Senior Member

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    >Suzanne Vernon is assuring us that she is not benefitting financially from being on an IOM committee. That is one of the most disingenuous statements I could imagine on the subject. There are many ways to benefit that are not financial. The currency here may not be money in any direct way (and I believe that to be true). It is power. It is about being connected. It is about building a resume, credentials, a career. All of those have the strong potential to indirectly benefit the CAA and/or Suzanne Vernon financially in the future, even if it will just be a matter of the CAA still being in existence, which looks more and more questionable.

    >We still haven’t heard why the CAA is in favor of the IOM contract when pretty much all of the respected experts are not and when the patients have made it abundantly clear that they do not want the IOM contract to go forward. If an organization is so removed in its position from that of the group of people it purports to represent, is it too much to ask for a genuine explanation?

    http://thoughtsaboutme.com/2013/10/...isagreeing-with-experts-and-patient-majority/
    Mjmouser, justinreilly and beaker like this.
  3. Snow Leopard

    Snow Leopard Senior Member

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    Moderator note: threads on same topic were merged.
  4. caledonia

    caledonia

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    Can you say "conflict of interest"? This explains a lot about why the CAA takes the positions that it does.
  5. jspotila

    jspotila Senior Member

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    Here's what I don't understand about the conflict of interest argument: it has to apply equally to everyone. So yes, it is prestigious to be on an IOM panel. That's the real "compensation" for the enormous time investment it requires. But everyone on a panel gets that benefit.

    In the case of the current GWI case definition panel, both Suzanne Vernon and Fred Friedberg are members. So both of them get the prestige and resume boost of that. And their organizations, the CFIDS Association and the IACFS/ME, both also benefit from their participation. But if this is a conflict of interest for Suzanne, then it's a conflict of interest for Fred too.

    The same will be true of the ME/CFS IOM panel. For example, would it be a conflict of interest for Dr. Peterson to serve, since his private practice and Simmarron would both benefit from his participation? What about Dr. Montoya or Dr. Enlander or Dr. Klimas? Should they be barred based on a conflict of interest because of their practices and their institutions?

    Conflict of interest is a defined policy. If you want to define conflict of interest to include indirect benefit to the person's institution, then you have to apply that definition to EVERYONE. And in that case, just about everyone we would want to serve on the IOM panel would be conflicted out because they're associated with private practices and/or institutions.
    leela and Firestormm like this.
  6. NotAllInMyHead

    NotAllInMyHead

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  7. caledonia

    caledonia

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    Maybe it should be redefined as self-serving, vs. having a patient centered focus. People can serve on a board, but if they're self serving, then they will make decisions based on what's good for themselves, vs. what might be good for the patients. I have seen this many times in non-profits I've volunteered with. Even one person can really screw things up, and if they can recruit some followers, it's even worse.
    Dreambirdie and leela like this.
  8. NotAllInMyHead

    NotAllInMyHead

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    I agree, Jennie: I would consider it a conflict of interest for Fred Friedberg or any other potential committee member to lobby for the IOM contract. This is not unique to Suzanne Vernon. What's unique to her is how vocal she is in her support of the IOM contract in direct opposition of our experts.

    So, to be absolutely clear, I am not saying that Suzanne Vernon's serving on the committee would be a conflict of interest (although I doubt she'd be the most qualified). I am saying that her so strongly supporting that there will be a committee is a conflict of interest. Of course, I would not consider it a conflict if our true experts were serving on such a committee, which hopefully will never come into existence.
    asleep likes this.
  9. NotAllInMyHead

    NotAllInMyHead

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    One more thing: I am not talking as a lawyer here (as I rarely am these days). To me, a conflict of interest is present in a situation when an individual has more than one interest that conflict and, as a result, one of those interests may be sacrificed for the benefit of the other. "Representing" (or at least claiming to) the patients conflicts with having an IOM committee on the disease definition. Thus, conflict of interest. But the term self-serving works for me, too.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I made this comment, awaiting approval, on Vernon’s post:
    “I generally agree with Carrie. You say that we need to support the IOM contract in order to have a seat at the table and have increased research funding. That doesn’t make any sense especially based on the history of HHS and this disease.

    Ian Lipkin pointed out that AIDS patients didn’t get any funding for research from NIH until they created a big scene and that’s why we haven’t gotten factual information and funding from HHS. We need to keep ratcheting up the pressure and complaints, not eliminate them.

    Unfortunately we are so sick that we can not do street theater and stage big protests like the AIDS patients. That’s why we need our healthy professionals like you to stand up loudly to HHS, but since you worked with Reeves on his victimization of patients and fake science, I guess I can’t hope to much. But Id really really like to be proved wrong.”
  11. jspotila

    jspotila Senior Member

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    I think what is confusing to me is your use of the term "conflict of interest" (which has a specific meaning) in this context. Your opinion (and you are not alone) is that the IOM study is not in the best interests of patients. Suzanne's opinion (and she is also not alone) is that the IOM study could be in the best interests of patients if it is done properly. Both sides believe they are acting in the best interests of patients. But that doesn't create a conflict of interest - it's a disagreement.

    I have no objection to anyone disagreeing with Suzanne or anyone else. I've participated in this debate publicly, and privately with multiple people/organizations. I'm also doing what I think is in the best interests of patients, but I don't think that those who disagree with me have a "conflict of interest." That phrase has a specific and important meaning, and we shouldn't dilute or redefine it to suit our purposes.

    Some people have suggested that experts boycott the committee. But that seems to me to be definitely in conflict with the interests of patients. If the panel is going forward, and it seems like it is, then we want the true experts on it! If they all boycott, we only guarantee that the panel will be populated with non-experts, many of whom will not act in our best interests, even if only because they don't understand them.
    Firestormm likes this.
  12. NotAllInMyHead

    NotAllInMyHead

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    after the GWI/CMI disaster, i really wonder how reasonable it is to think that an IOM committee is in the patients' best interest. i respect that it is your opinion, jennie. i strongly doubt suzanne vernon really believes that.
  13. Ecoclimber

    Ecoclimber Senior Member

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    The Gulf War Veteran's group had a powerful advocacy group, the Research Advisory Committe and a Congressional Mandate, yet with all that support and advocacy, the majority of members on the IOM panel were chosen with the psycho/social predisposition.

    RESULTS:
    The committees's work led to a 450-page 2008 report that showed Gulf War illness is a physical condition, rather than one caused by stress or psychiatric illnesses. The report also showed that the symptoms are related to toxins, such as sarin, anti-nerve-agent pills and insect repellents, that the troops were exposed to during the war. IGNORED BY THE PANEL

    Steele agreed that VA excluded data from the research, and that it was "akin to medical malpractice." IOM committee was allowed only to select literature that was based on psychological research.

    The IOM research included veterans from the past 20 years, rather than just Gulf War veterans, and "lumped" their symptoms together, according to Steele.

    A 2012 report by the group also said that VA staff was working to reverse those findings. For example, a survey VA sent out to Gulf War veterans focused on psychiatric issues, rather than physical exposures.

    VA officials purposely hide or manipulate data to avoid paying costly benefits claims to Gulf War veterans.

    "Congress . . . created the (committee) precisely to provide this kind of independent advice, because of the demonstrated inability of VA and DoD (Department of Defense) staff to face this problem honestly and conduct an effective research program to solve it."

    "If the studies produce results that do not support the office of public health's unwritten policy, they do not release them," said Steven Coughlin, a former epidemiologist in the VA's public health department

    Rep. Mike Coffman, R-Colo., and a Marine who served during 1991 war, called VA's handling of Gulf War illness "embarrassing." He asked the VA why they changed Congress's charge to ask the IOM to do research on treatments, to which she said VA let the experts decide what should be looked at. He also asked why VA had spent money meant for Gulf War vets on other programs, but Davey said she was not prepared to respond to that question.

    "Congress . . . created the (committee) precisely to provide this kind of independent advice, because of the demonstrated inability of VA and DoD (Department of Defense) staff to face this problem honestly and conduct an effective research program to solve it."

    "If you had anyone on your panel who was a Gulf war vet, I don't think we'd be here today," Coffman said.

    Lea Steele, a researcher at the Veterans Health Research Program at Baylor University, backed Coughlin's claims, saying, "In some sectors within VA, there appears to be backward movement."

    Steele also charged that VA has used money meant for Gulf War illness to fund other programs.

    Coughlin said a 2012 panel of outside experts hired to help the Institute of Medicine study neurological connections to Gulf War illness was stacked in favor of those who believed the disease is psychological.

    There was no one to present the opposing side — that it's neurological," Coughlin said. "Science is self-correcting, but if people don't publish data that doesn't support an opposing hypothesis, then it's a huge problem."

    The panel said they found no one cause to what they called "chronic multisymptom illness," and that there was no one treatment for all of those veterans.

    After the 1991 Gulf War, a series of research reports raised concerns that the veterans' children were more likely to be born with defects, and that veterans' spouses were also becoming ill. Congress mandated that the VA maintain a registry of Gulf War veterans' family members. The data has never been released, and Coughlin said he has "been advised that these results have been permanently lost."

    DOD lost all records on the type of vaccinations given before deployment

    Rand corporation refuses to release information on vaccine data

    Coughlin, who was a senior cancer epidemiologist at the Centers for Disease Control and Prevention and the director of the public health ethics program at Tulane University, said continuing to work for the VA was "against my conscience."

    The bottom line is that the VA acted in the same manner with Gulf War Veterans as the NIH & the CDC has acted with the ME/CFS patient community.

    The Fact that all of the ME/CFS researchers/experts except one who are on the front lines and in the trenches everyday for the last 30 years oppose this contract, is a clear indication the IOM should be boycotted until proper safeguards and transparency is put in place and we have approval from all of the ME/CFS researchers/clinicians.

    To date, this have been behind the scenes manuvering and coverup by the HHS and CAA.

    We already have a panel of experts that openly express their support for the CCC criteria. It is ludicrous to believe that a panel of non-experts who have openly opposed throughout the 30 year history of this illness a biological/organic aetiology, will now suddenly come up with definition criteria that is not predisposed to psychiatric disorders.

    The IOM Panels are nothing but Death Panels. Death to Research. Death to Treatment and eventually Death to the Patient. These IOM Death Panels have already left their mark on the Gulf War Veterans with 18 to 22 suicides a day for lack of treatment and on us with the loss of so maney including Tom Hennessy.

    These IOM DEATH PANELS mentioned by Sarah Palin are part of the Obamacare to cut costs in medical care and disability payments to placate the medical, health and disability insurance industry at the expense of euthanizing patients by limiting access to proper medication and treatment programs. The Grass Roots Patient Community should not stand to be treated as second class citizens.
    asleep, Shell, Keela Too and 4 others like this.
  14. jspotila

    jspotila Senior Member

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    I'm not convinced the IOM panel is in our best interests. I've been quite vocal about my concerns. It's high risk, because if we get a bad panel there is a high risk of a bad result. However, it looks like the panel is moving forward. So in that case, what do we need to do to protect our interests and mitigate the risk? That's what I'm struggling with now.
    justinreilly likes this.
  15. JohnnyD

    JohnnyD Senior Member

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    After 25+ years of being !@#$% over by federal agencies, why would any ME/CFS patient want to take a High Risk now? Patients deserve much much better than the government agencies, Once Again, putting them at High Risk. The way to protect your interests and mitigate the risk is to follow the leads of groups like Act-Up and the group of 35 (-1) MECFS Experts and KILL the IOM panel. REFUSE the IOM, follow the CCC. Period.
    Delia and liquid sky like this.
  16. vamah

    vamah Senior Member

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    One risk of participating is that it becomes a "buy in." Even if our experts are completely ignored, the IOM will still say: "How can you argue with our findings when top experts in the field were involved in the process?" This would be a worse situation, in my opinion, than a bad result with little scientific clout behind it.
    Shell likes this.
  17. Snow Leopard

    Snow Leopard Senior Member

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    It is very easy to argue against the validity of top-down policies that are formed without proper consultation with those whom they affect. Acceptability by patients is the most important factor.

    There is a growing movement within various public health fields to not only include, but put the needs and concerns of those being served ahead of the preconceived ideas of experts, no matter whom they may be.

    Of course some "leaders" are of reluctant to take this action because empowering others means sharing power and taking new directions. It is also easier for "leaders" in neglected fields to ignore those whom they are meant to be serving because there is a general lack of exposure of the issues to the general population.
    leela and Valentijn like this.
  18. readyforlife

    readyforlife Senior Member

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    Like you said It looks like the panel is moving forward, unless some legal action stops it. But it looks like they are picking panel members as we speak so maybe we could protest that we don't want Suzanne Vernon on the panel?
    justinreilly likes this.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  20. Ecoclimber

    Ecoclimber Senior Member

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    This is the same procedure that the VA IOM advocacy groups attempted but where did that get them? Do you think based on their previous actions against significant opposition which included Congress, that their actions would be any different? This would mean that if they created a criteria bettter than the CCC or ICCC-ME, it would in affect overturn their Gulf War Veterans ruling from GWI to CMI.

    Given the thirty year history of HHS, NIH, CDC, do you really believe this will happen and given the fact that Vernon and Friedman are on both panels. I believe it is naviety to believe otherwise.

    They don't have enough money to fund legitimate scientific research projects into ME/CFS as Lipkin has stated. They turned him down but gave $250,000 in grants each year to Friedberg over 6-7 year period for patients to cope with this illness plus the money allocated to the IOM for this dog and pony show when all of our researchers/clinicians oppose this contract and who are the real experts and quite capable in defining this illness!

    Why this sudden push to use the IOM when the previous chairman stated this is highly unusual procedure for the IOM to define illness criteria especially coming on the heels of the recent VA IOM decision?

    Once they go behind closed doors, all bets are off.
    asleep and RL_sparky like this.

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