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Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 11, 2013.

  1. Nielk

    Nielk

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    Jeanette Burmeister - Thoughts About M.E.

    http://thoughtsaboutme.com/2013/11/...s-conflict-of-interest-with-respect-to-mecfs/

    Please read the whole blog but, here re some excerpts:



     
    Last edited: Nov 11, 2013
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    just another bureaucracy cover up, to stifle exposing they have been sick, evil, useless, corrupt bastards
    can't have this said to be a REAL illness or we mere Peons would sue the scumbags for millions, and worse, expose even more the fact that their entire House of Cards is a load of bullshit and just chaff in the wind we should piss on and ignore to death. They must be "seen to be in control, Big Daddy who Rules Impotently" at all times, you see?
    Truth is they are mostly grasping, useless assbags who couldn't set up an "inebriation event in a fermenting factory" :p
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    PS
    Since the government has had to apologize for the Camelford Water Poisoning incident that Wessely "Lecter" had said was mostly mass hysteria, I look increasingly forward to seeing him stripped of his title, as has been done to other Establishment vermin who've been recently exposed for heinous crimes.
    ,|,,
     
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  4. Ren

    Ren Primum Non Nocere

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    Excellent! Thanks for sharing - thanks to Ms. Burmeister!

    The following was posted on occupycfs.com (http://www.occupycfs.com/2013/11/06/iom-conflict-of-interest-policies/#comments), as conflict of interest is being discussed there as well, FYI. I'm adding this here, in case it can be used in the larger argument. To my understanding, IOM sent the policy statement below to Jennie (occupycfs) who very kindly shared it and wrote about it. Again, please see the occupycfs source for more information/details.

    A few quotes pulled from the National Academies policy statement (http://www.nationalacademies.org/coi/bi-coi_form-0.pdf) Bold added by me:

    “The technical skills and perspectives of this distinguished and diverse group of individuals are essential to the ability of the institution to consistently produce accurate and objective assessments of national problems, needs, and opportunities.” (p.1)

    “Questions of lack of objectivity and bias ordinarily relate to views stated or positions taken that are largely intellectually motivated or that arise from the close identification or association of an individual with a particular point of view or the positions or perspectives of a particular group.” (p.3)

    “Conflict of interest requirements are objective standards designed to eliminate
    certain specific, potentially compromising situations from arising, and thereby to protect the
    individual, the other members of the committee, the institution, and the public interest
    .” (p.4)

    The individual, the committee, and the institution should not be placed in a situation where others could reasonably question, and perhaps discount or dismiss, the work of the committee simply because of the existence of such conflicting interests.” (p.4)

    Based on the above quotes, it could perhaps be argued that divergence by IOM CFS/ME (now) from IOM GWI (newly exisiting GWI report) undermines the academy’s goals of consistancy and accuracy – and its prestige.
     
    Last edited: Nov 11, 2013
  5. Nielk

    Nielk

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  6. Ecoclimber

    Ecoclimber Senior Member

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    Finally, finally after raising this issue a few days ago in my post concerning the violations of Federal Regulations with regard to the ME/CFS IOM contract and calling for filing a complaint with the Office of Inspector General for a thorough investigation, a patient advocate, Jeanette Burmeister, comes through with filing a complaint. This is best served by patient advocates who are legal experts. Thank You, Jeanette.

    I believe an investigation is warranted as to SSA funding and the whole procedural process with regards to transparency and HHS communication with stakewholders concerning the contractual process with HHS. I would also be interested under an FOIA filing, all written and electronic communication and information with regards to Dr. Vernon, Dr. Friedman involvement between the CAA, ME/CFS IOM contract and their appointments on the VA IOM Panel and officials of HHS.

    This patient community needs to back and support those adovcates who are working tiredlessly behind the scenes and who are themselves impacted with this illness. Many of the patient community should be applauded for helping their cause by twittering, creating Facebook enteries, signing petitions, contacting their representatives, donating to the kickstarter project but much more needs to be done. This action has to be continuous. More volunteers from the patient community and their families need to become involved until this process is won.

    The forces arrayed against this patient community are formidable. We are talking about the health, disability, medical, insurance sector which contibutes hundreds of millions of dollars in campaign and lobbying dollars as well as well-funded organizations as the APA.

    Currently there is now a strong push by those forces who want to reduce Medicare and Medicaid benefits to require the SSA to start conducting the backlog of CDR (Continuing Disability Reviews) in those receiving SSDI & SSI benefits. Any process that does not meet within the guidlines of FDR or FAR, must be challenged.

    This will not only affect the current patient community but future generations to come!! Patient advocates need your continual support more than ever.
     
    Last edited: Nov 12, 2013
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  7. lnester7

    lnester7 Seven

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    Do we have a lawyer or experienced person that only do this kind of stuff ???
     
  8. jspotila

    jspotila Senior Member

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    Thanks, Ren! Just to confirm, I asked IOM a series of question about how they determine conflicts of interest for potential panel members. They sent me that policy in reply. Jeannette and others raise the equally important issue of whether the IOM itself has a conflict of interest created by the need to keep things consistent across reports - report x said one thing, does that mean report y can result in a different conclusion? I'm anxious to hear what the OIG says in response to Jeannette.
     
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  9. Ren

    Ren Primum Non Nocere

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    What about the April 2013 court case - Secretary of Health and Human Services 0, 04-1593V (Fed. Cl. 2013) - where a patient was awarded damages after developing CFS following a vaccine? Google brings up some news outlets but also a link to one of Ecoclimber's posts, http://forums.phoenixrising.me/inde...accine-caused-chronic-fatigue-syndrome.24663/

    In the above post, there's a link for the ruling (view "our backup" as the .gov link (hmmmm) isn't working - "The page...no longer exists" https://www.courtlistener.com/uscfc/5s5B/id-v-secretary-of-health-and-human-services-0/?stat_Non-Precedential=on&stat_Relating-to orders=on&court_ccpa=on&sort=score asc&stat_Precedential=on&stat_Errata=on&page=43

    I assume the case itself is protected by privacy laws? Can an FOI be done for parts of it? Am I right in understanding this was a federal case against HHS, and HHS lost? I'd like to know about consultation with a lawyer as well, like the one who won this case. Maybe there's info involved that can help with the current events?

    Am also curious to compare the timeline of HHS' loss to the HHS/SSA IOMgate timeline. The case is dated April 2013, but the media story doesn't seem to have broken until July 2013. Why the delay?

    - Re checking the timeline - http://forums.phoenixrising.me/inde...vents-of-the-hhs-contract-with-the-iom.25933/ - And I'm playing devil's advocate obviously, but the timeline names the October 2012 CFSAC recommendation to HHS - which included CCC. And then we have the late August 2013 HHS IOM sole solicitation announcement.

    Perhaps HHS was happy to ignore CFSAC until HHS lost its federal case? HHS then recalls the CFSAC recommendations as a legitimate prompt to re-define ME/CFS. So how do we know that HHS/SSA - following the loss of this court case - aren't motivated to re-define ME/CFS, so as not to lose future court cases?
     
    Last edited: Nov 11, 2013
  10. Ecoclimber

    Ecoclimber Senior Member

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    In civil cases, a strategy often employed is to bury the other side in paper work. Start filing complaints left and right on every conceivable possible violation whether substantial or minimal on every possilbe infraction of Federal Rules, Laws, Regulations and Procedures with regards to what was mentioned above. They will be require by law to investigate each and every complaint and possible subjorn the entire IOM process.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Eco, my two cents is I would prefer to see strong and substantial complaints and arguments (such as Jeannette's here) made and fully backed by the community, rather than a flurry of complaints, some of which may be perceived as frivolous.
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jeannette, Jennie, I, Patricia Carter and a few others are former lawyers, but there is no one that only does this type of thing. I think Jennie comes closest with her attention to regulatory compliance of CFSAC and other government bodies dealing with ME.
     
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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is a repost of my comments elsewhere. Pls ignore if you've seen already.

    Excellent and very important find by Jeannette on page 22, that “CFS” is not an “organic disease”, but instead a "somatoform disorder"!! We need to keep this particular point prominent which so clearly shows their extremely strong bias!
    http://books.nap.edu/openbook.php?record_id=13539&page=22

    That assertion was backed by a cite to Sharpe, 2001, btw. On the same page they cite Wessely for the proposition that GWI is just a bunch of non-organic (psychological) symptoms that do not even rise to the level of a syndrome, because there is no particular cluster of symptoms!! They say medically unexplainable symptoms from combat were previously known as “psychoneurosis.”

    God, this is even worse than I thought. This is like Wessely circa 1990.

    They as say Fibro and IBS are somatoform disorders with no organic basis. We need to rally the fIbro and IBS patients to help us (as well as the Gulf Veterans), because, the way this is going, they’re going to be the next victims of the full IoM treatment!!
     
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  15. Ren

    Ren Primum Non Nocere

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    I feel better knowing there are lawyers among us (the ME community) - that they're/you're trained to see things the rest of us miss. Justinreilly's post 14 above is especially scary. Some time ago, I read part of Malcolm Hooper's "Magical Medicine". I wonder if a version of the above "game plan" is included in that document.

    I have limited experience in Sweden and know psychiatrists there are pushing the somatoform angle, even including I believe PMS as a mental disorder. They also have an ally in a university history (?) department who claims that ME/CFS is a fictional disease entity assigned to women by male doctors who believe that women are weak.

    I did some limited research a while back, and there's a continuing education psychology course (again in Sweden and offered by the State health authorities), and they're teaching a somatoform course, using books with chapters by what I remember to be the Wessely gang and also Per Fink, who is a Danish psych person promoting his own similar theories, and who I believe is involved with the Karina Hansen forced institutionalisation in Denmark. I know there's a youtube video with protesters questioning him.

    I found also that some of the somataform psych people attended a conference in Switzerland, perhaps. I can check my notes. But I believe it was hosted by a prominant US psych group whose pres is in New York. I remembered that the conference website had the WHO logo - but of course ME as a psychological illness is not endorsed by WHO, and I believe there was something in the Hooper document about Wessely/co. hijacking the logo at one point to legitimatize their own theories.

    I emailed the US psych group and asked what the group's position was on ME/CFS, but I received no response.

    Ecoclimber said something on another thread about RICO, which I had never heard of before reading that post. But, again in Sweden, there was in the last several months (I believe - my sense of time is faulty) an official complaint filed by a psychiatrist (I believe) who asserted that based on a US study, CBT in general had been shown to be no more useful than any other type of therapy, in general. This was not specific to ME/CFS.

    The complaint suggested that person X who had been payed to advise the healthcare authorities regarding therpy, that he advised them to use CBT (over other therapies) because he himself had a financial interest in the State healthcare adoptinig CBT over other therapies. This was of course reported as a conflict of interest. I feel now that I should look to see if person X is limited to Sweden - or what ties, especially financial, he may have outside of Sweden. I don't know if the complaint was investigated, etc.

    Additionally, what about the recent controversial DSM catagory. Can't think of it off the top of my head. But wasn't this catagory linked to the Wessely school? How does that catogory fit now with IOM?

    So I just dumped a lot of (vague) info. But I thought of it as a kind of brainstorming - should any of these pieces be useful to building a greater understanding of this tangled web we seem to be caught in. (Someone should do a political cartoon of a somataform psychiatrist with a spider body saying, "Come into my parlour...")

    I can search for greater/ more specific details if needed. Now I've really tired myself out and my little rush of coffee (guilty pleasure) is exhausted!
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The new DSM diagnosis is Somatic Symptom Disorder which replaces the somatoform disorders. It is basically being overly worried about ones health, iirc. I don't remember the specifics.

    My take when I was looking into it was that the Wessely school has been trying to argue that there is no difference between "CFS", IBS, Fibro and the other "functional syndromes", they are all the same mental disorder. A problem for them, though, was that this theory didn't fit into any of the existing mental disorder categories, so in DSM 5 they made the somatoform category broader and more amorphous, so they could fit this theory in there.

    I don't think this has anything specific to do with the IoM reports, just they are both attempts by people to make ME and other organic diseases disappear into amorphous mental illnesses so insurers don't have to pay for care.
     
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  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Don't forget that, according to ecoclimber, every one of the nine numbered volumes of the GWI reports takes the same psychogenic-and-CBT/GET-as-the-treatments approach to "CFS" as this last GWI report to which Jeannette refers. So it's not just a matter of it would make IoM's one last GWI report look bad, but that all nine of their numbered GWI reports (there are additional unnumbered IoM GWI reports and I don't know if they also say ME is somatoform disorder) would be made to look unscientific at best, anti-scientific and predatory at worst if the ME redefinition report didn't say ME was a somatoform disorder.

    Fwiw, I have seen volumes one and nine and they are both as Eco describes- "CFS" as medically unexplained or unexplainable symptoms to be treated with CBT and GET.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think it would be very fruitful to go through all of IoMs GWI reports and catalogue their description of ME, with page cites, as evidence for the complaint to the HHS IG. Can anyone take on this project please?
     
  19. Nielk

    Nielk

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    Where are the links to them?
     
  20. NotAllInMyHead

    NotAllInMyHead

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    i had to strike a balance between giving the OIG enough information to investigate without bogging them down with too much information. Remember that the inspector general is is a neutral party here. he’s not our enemy and we want to keep it that way. if, all of a sudden, he gets a ton of similar complaints. he will most likely be put off and that will definitely work against us.

    Also, remember that the inspector general is unfamiliar with the symptoms and other specifics of our disease. if we give him too much to sift through, too many details, it may work against us because the main argument will get lost. sometimes, less is better. this is often hard to understand for lay people. but there are tactics involved here. and i did think it through.

    The OIG has more than enough info to dig into this. I believe it would be a mistake to bombard them with more. there is no upside to going with more than the recent report, unless the other reports have significantly different, helpful statements by the IOM. in fact, going with older reports sets up an argument by the IOM that they have evolved as science has advanced. the report from earlier this year is by far our strongest argument.

    Jeannette
     
    Last edited: Nov 12, 2013
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