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A close look at some of the IOM provisional panel nominees

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Dec 5, 2013.

  1. Ren

    Ren One of nineteen million dark horses.

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    I'm behind as well, but I noticed this on a thread earlier (see post 81): http://forums.phoenixrising.me/inde...mbers-has-been-posted-3-dec-2013.26810/page-5

    I guess that shows it's been done by someone somehow, but... - Sorry, that's all I know.

    One other general point - occupycfs sometime ago had a link to IOM's official statement regarding bias/conflict-of-interest, and I remember noticing that the statement didn't just say that bias/conflict had to be present but that "significant" bias/conflict had to be present, so...
  2. jspotila

    jspotila Senior Member

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    I strongly recommend that we (individually and collectively) submit feedback to IOM by the December 23 deadline. We need to support that feedback, so if there's someone we want removed we need to provide the concrete reasons why.
    Roy S and WillowJ like this.
  3. jspotila

    jspotila Senior Member

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    Regarding Natelson:
    This post was quoted in a comment on my blog, and while I responded to it there I wanted to address it here as well.

    Saying that Dr. Natelson has a "preference for the term 'Medically Unexplained Symptoms' takes his comments completely out of context. We linked to the summary of that talk in the original post, but here is it again: http://www.masscfids.org/resource-l...ote-speaker-at-mass-cfidsme-a-fm-association-

    The full context for that quote is:

    So his preference for Medically Unexplained Symptoms is to replace the term "somatic amplification" NOT ME/CFS. Another quote from that talk: "Natelson's hypothesis is that some CFS patients, especially those that have no accompanying psychological disorders, have brain dysfunction or encephalopathy." And then: "Some CFS patients have poorer neuropsychological test results, abnormal brain MRI imaging, poorer function in health related quality of life, wider reduction in brain blood flow, more abnormal spinal fluid results, and higher levels of ventricular lactate, all which point to a brain disease." Given his work on brain imaging and spinal fluid, I don't see how we can draw the conclusion that he is in the psychogenic or behavioral school.
  4. jspotila

    jspotila Senior Member

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    Certainly not. In fact, we go on for another four paragraphs going into her publications re: ME/CFS. I'm concerned about her. I'm going to read the paper Justin cited above. Just because she is experienced in evidence reviews does not necessarily balance out against those other papers.
    Roy S likes this.
  5. Dreambirdie

    Dreambirdie work in progress

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    We can't negotiate with people who repeatedly screw us over. Please sign this petition. Thanks.

    "We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."


    https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/
    beaker likes this.
  6. Dreambirdie

    Dreambirdie work in progress

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    An FB friend of mine, Danny Ze-dog, wrote up this very insightful post on the issue. He was addressing Robert Miller.

    "Bob, as someone who has been involved with a labor union, you surely are familiar with collective bargaining strategies. Here's the problem with the IOM: we patients have a non-negotiable NEED for something like the CCC at MINIMUM, because anything less than the CCC is, well, Fukuda. Thus, we can't afford to compromise beyond that. Now consider what happens when a mixed panel, contracted to play by the HHS/IOM rules, tries to come up with a definition. Even if (and this is not a given) every one of 'our' experts on the panel proposes the CCC or equivalent as a starting position, they will be obliged to compromise down FROM that position. They are extremely unlikely to be able to simply convince the rest of the panel, which includes IOM members, to accept their starting position. So the question is - are you and others who advocate working with the IOM willing to accept something weaker than the CCC as an outcome?"
    Wally and Roy S like this.
  7. Dreambirdie

    Dreambirdie work in progress

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    From the International ME Association.

    "DO NOT BE LURED INTO WORKING WITH THE IOM COMMITTEE TO DEFINE ME/CFS!

    Mulrow and Alegria are bad news for M.E. patients. They are likely being set up to lead the committee to the definition of M.E. as a psychological illness which is the goal of HHS/CDC and the IOM contract.

    It does not matter that some of the people on their proposed panel might be knowledgeable about ME/CFS or even if they are sympathetic to M.E. patients. IOM only created this "provisional committee slate" in order to persuade M.E. patients to give them feedback so they can claim patients participated in the creation of the committee and its membership, in order to give legitimacy to the process.

    The reason HHS made the contract with IOM to create a definition for M.E. in the first place is for IOM to create a definition of ME/CFS as a psychological illness. They chose IOM because IOM did the VA's bidding so well in creating a definition of Gulf War Illness as "Chronic Multisymptom Illness" (CMI) and recommending that doctors prescribe CMI patients antidepressants, behavioral therapy and exercise.

    Any patient who sends feedback to the IOM committee or deals with them in any way is only giving them cover to say this is a legitimate process. IT ISN'T. It is fixed. HHS and IOM both know what IOM is going to do; that is why they made the contract.

    If a member of the committee does not go along with it, he or she will be silenced or kicked off the committee.

    Any patient who gives feedback to the IOM Committee is helping them legitimize this farce."
  8. lnester7

    lnester7 Seven

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    @Dreambirdie here is how I see it.
    1) An experienced group try to hire lawyers and get that contract cancelled or at lease challenged, very quietly and smartly just like they did to us.
    2)The other group as plan b, tries to make the process as painful and as visible as possible so they are so scrutinized and media coverage that they cannot pull a charade like they did with GWS.

    I think we need to cover all bases. If we just take it down, we will end up worse than GWS!!! nobody says we cannot play the game to and turn it to our advantage.
    Ren and Nielk like this.
  9. jspotila

    jspotila Senior Member

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    I am quite concerned about Mulrow and Alegria myself. But I would like to know the specific evidence that led the IMEA to this conclusion.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @jspotila , If you end up getting access to Alegria's papers on Neurasthenia, can you provide a link?

    anyone else have access to full text of journals?
  11. jspotila

    jspotila Senior Member

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    I definitely will, Justin. I asked someone who commented on my blog and quoted text from within the paper if he/she could provide as well.
    WillowJ likes this.
  12. WillowJ

    WillowJ Senior Member

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    That first one is concerning although I'd like to see it in context.

    The second one is weird, but I think it comes down to, "to a man with a hammer, everything looks like a nail". His hammer is neurology. I have seen him debate Dr. Klimas (or was it Dr. Fletcher?) at a meeting over whether it was immunological or neurological. He was in no way advocating that it was not a real disease, just that it was purely neurological, but it was weird that he wouldn't acknowledge the importance of the immune stuff. But neurologists are typically self-important--it's very unusual to meet one who isn't.

    That being said, he isn't my favorite ME expert in the world.
  13. Gemini

    Gemini Senior Member

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    Dr. Natelson's final slide, NIH State-of-the-Knowledge Workshop April, 2011, is in context I believe:

    CFS REMAINS A MEDICALLY UNEXPLAINED ILLNESS

    You can view the slide & his entire presentation on the NIH video at 5:32:06

    http://videocast.nih.gov/launch.asp?16575
    Last edited: Dec 10, 2013
  14. Gemini

    Gemini Senior Member

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    Dr. Natelson spent over ten years studying psychiatric illness in CFS patients. The context of the excerpt is:

    Functional status, neuropsychological functioning, and mood in chronic fatigue syndrome (CFS): relationship to psychiatric disorder.
    Tiersky LA, Matheis RJ, Deluca J, Lange G, Natelson BH.
    Source
    Fairleigh Dickinson University, School of Psychology, Williams Hall (T-WH1-01), 1000 River Road, Teaneck, NJ 07666, USA.
    Abstract
    Individuals with chronic fatigue syndrome (CFS) face chronic physical debilitation, reduced neuropsychological functioning, and changes in emotional well-being that significantly detract from quality of life. The role of psychiatric disturbance in reducing quality of life in CFS remains unclear. In the current investigation, the role of psychiatric status in reducing health-related quality of life in CFS was examined. Four subject groups were compared on measures of functional well-being, mood, and neuropsychological status: individuals with CFS and no history of psychiatric illness, individuals who had current symptoms of psychiatric illness that began after their CFS diagnosis, individuals who had current symptoms of psychiatric illness that began before their CFS diagnosis, and a healthy sedentary control group. Overall, it was found that individuals with CFS suffer from profound physical impairment. Concurrent psychiatric illness, however, did not adversely affect physical functional capacity. Physical functional capacity was not worse in individuals with a concurrent psychiatric illness. As expected, concurrent psychiatric illness was found to reduce emotional well-being. Moreover, individuals with a psychiatric illness that predated the onset of CFS suffered the greatest emotional distress. Thus, an individual's psychiatric history should be considered when attempting to understand the factors maintaining disability in CFS.
    Last edited: Dec 11, 2013
  15. Ecoclimber

    Ecoclimber Senior Member

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    I've been away on other projects and do not have the time to participate as much as I would like. So below are some random thoughts for consideration.

    I have not researched any of the ME/CFS panel members nor am I going to. One paper that we, Miller's lab, felt was significant in our research was Natelson's Spinal fluid proteins http://www.sciencedaily.com/releases/2011/02/110223171235.htm as we conducted a mass spectrometry on a viral chip against those spinal fluid proteins. We considered it a significant milestone since it differentiated two unrelated patient communities with a control group and could lead to potential biomarkers. However, CSF would be impratical in a clinical setting based on insurance objections.

    There has been ongoing discussion on various internet discussion groups concerning ME/CFS panel members. The problem in replacing any of the ME/CFS panel members is that you might get someone that is even worse than the person being replaced! It's an unknown and the thought of this should be paramount in any consideration.

    More importantly and strategically, I believe strongly the ME/CFS patient community must show a unified front against HHS and the IOM excluding of course 'advocacy organizations for obvious reasons.

    Advocates:
    After reviewing various internet postings, it is disconcerting to see attacks on various advocates. There are going to be differences in approach, tactics, opinions but attacking each other in public divides the community. I believe these disagreements should be aired out privately behind the scenes via email, intermediaries, phone, private messages between the parties involved to reach a consensus if possible, by really listening to each other. Some advocates and researchers may not be cognizant of important information uncovered by the investigative research conducted here on PR, and elsewhere which should be explained to them.

    IOM ME/CFS panel member:
    If you object to a specific ME/CFS panel member, why not designate a point person to contact that panel member on behalf of the ME/CFS patient community listing the objections from the patient community.

    Many of these researchers are unaware of the information discoverd by the ME/CFS patient community concerning the policies, structure and limitations on IOM panel members with regards to reviewing scientific material nor are they cognizant of prior decisions by the IOM. They really do not understand the politics behind HHS and the IOM panel. Following the conversation, their response shoud be communicated to the ME/CFS patient community.

    With that in min, I am concern about Klimas and Bateman conflict of interests regarding past, current and future NIH contracts as well as possible connections or contracts with pharmaceutical companies. I know that a particular Fibromyalgia advocacy organization was significantly disturbed concerning Bateman's connections which I posted awhile back. This is something that needs to be flushed out with these researchers. I am also concern with Klimas's seemingly flip/flop on one of her research papers concerning exercise.

    NIH grants can be the lifeblood for a researcher or a researcher center. I would be curious if the researchers would come forward and state any contact with the NIH concerning future NIH grants. Perhaps, a possible FOIA inquiry should be initiated by someone?

    But, again if they are dismissed from the panel, who will be their replacement? Best alternative for the ME/CFS community is voiding the entire IOM contract which I believe will never happen without a lawsuit.

    Eco
  16. WillowJ

    WillowJ Senior Member

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    @Gemini , are you suggesting depression, etc, should be left untreated? Or that PWME don't get depression etc.? I disagree with those premises. The conclusion from the abstract is that psychiatric disease does not contribute to physical debility in this population and that is pretty much the opposite conclusion from the psychobabblers. And an important point, given the dismal state of the literature.

    That being said, I don't think psych issues are a major comorbidity; certainly the best data shows no more incidence than in any other chronic disease... and perhaps this is basis of your objection.

    Anyway I am not too concerned.
    Last edited: Dec 17, 2013
  17. Gemini

    Gemini Senior Member

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  18. Nielk

    Nielk

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    Jennie Spotila published this blog about the panelists.

    IOM Panelists: = Experts + Information - Bias - http://bit.ly/1gDw9HR
    justinreilly and WillowJ like this.
  19. Andrew

    Andrew Senior Member

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    I hope someone has commented to the link provided for comments. I have not even been able to review members, and there are only a few days left.
  20. Nielk

    Nielk

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    I am working on mine.

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