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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
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HHS/IOM contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by PennySwift, Feb 11, 2014.

  1. PennySwift

    PennySwift

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  2. unto

    unto

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    thanks Italy for this fight that you do, in my country, unfortunately, in these days outputs are "guidelines" on ME / CFS, we had hoped that patients come close to those Canadians, on the other hand are always focused on the psychological; is also a big disappointment because the report was attended by medical experts / famous in the treatment of ME / CFS, some of which menbri patient groups.
    ciao
    Izola and Ren like this.
  3. Ren

    Ren Primum Non Nocere

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    @PennySwift - Fyi, my comment on the article cited above was posted, but has since been removed. I also tried twice to comment on your article on Karina Hansen, but both times my comment was refused. (I have a copy of at least one of the these comments - if/when I find a copy of the other, I'll repost them here.) Thank you again so much, for your interest in and help for this community. Best, R-

    "DOWN WITH BIG BROTHER"
    Last edited: Feb 11, 2014
    Izola and ggingues like this.
  4. Ren

    Ren Primum Non Nocere

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    Subject: Liberty Voice - Boldly Inclusive

    My comment was posted to this article (http://guardianlv.com/2014/02/cfs-patients-war-against-controversial-u-s-health-research-plan-video/), but it has since been removed.

    I wrote:

    "Despite continual attacks from insurers (both public and private), some psychiatric groups, and government officials influenced by such groups - Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME.

    With proper funding, biological research will help truly manage and/or cure this disease. Not only is proper funding of biological research long past due, however, it's time as well that the agencies, institutions, and medical personnel who choose to abuse individuals with ME be held professionally and legally accountable for their actions.

    With the abundance of biological data and expert guides (CCC and ICC) freely available, the Nuremberg defense is no longer an acceptable excuse for the ongoing abuse and trauma inflicted upon this unique (patient) population.

    Please remember, people do not just suffer for decades, they die as well - often from suicide as the disease itself coupled with societal hostility and/or isolation becomes unbearable.

    Ms. Swift, THANK YOU so much for helping to share the voices of a community who is so often silenced. Your time and work are greatly appreciated!!"


    As stated earlier, I also tried (on two different days) to post a comment on the recent Karina Hansen article, http://guardianlv.com/2014/02/briti...cue-me-patient-held-at-danish-hospital-video/.

    Both times, my comment was not posted at all. I wrote:

    "Danish psychiatrists Nils Baile Christensen and Per Fink are both cited in the Institute of Medicine's controversial 2013 report, "Gulf War and Health: Treatment for Chronic Multisymptom Illness" which also features CFS. (1)

    The IOM CMI report also cites the UK psychiatrist responsible for the abuse of young ME patient Ean Proctor, whom medical staff threw into a pool, flung from his wheelchair, and left lying in urine-soaked bedding. (2)

    What are the ethical implications of an IOM panel who chose to include work from individuals who build careers on such abuse?

    (1) http://www.nap.edu/openbook.php?record_id=13539&page=150

    (2) http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

    Thank you Ms. Swift, Liberty Voice, and Mr. Wijbenga for helping to share word of these horrific wrongs. Bless Dr. Speight for all of his work and the Hansen family (and others) for all they endure.

    As for the medical-and-social service professionals who abuse their positions of power - they've earned a place among those who once dictated and enforced social policies like eugenics, forced sterilization, lobotomies, criminalization of homosexuality, and institutionalization for political dissent. Same abusers, same abuse, new victims."
    Last edited: Feb 12, 2014
  5. Izola

    Izola Senior Member

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    ************************************************
    Thank You Ren.
    Last edited: Feb 12, 2014
    Ren likes this.
  6. Izola

    Izola Senior Member

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  7. Izola

    Izola Senior Member

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  8. Ren

    Ren Primum Non Nocere

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    Thank you, Izola. :balloons:
  9. alex3619

    alex3619 Senior Member

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    @Ren, it is indeed the same old abuse. Psychiatry has a long track record of it. When you go back in the history of psychiatry, its a history of horror. Vampires, werewolves, witches, ghosts, goblins ... eat your heart out. Nothing is scarier than psychiatry except psychotic mass murderers with an army behind them.

    Since at the May 2013 IiME conference there was a call to have doctors who prescribe exercise for ME to be struck off the medical register, I think its time we think along those lines. I have been thinking that way even before Don Staines made his statement (to audience wide approval).

    I do know if I face serious psychobabble at any point I will be lodging a formal complaint.
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  10. Izola

    Izola Senior Member

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    :)Alex: :balloons: Thanks for liking my post.:DIz Have a G'day. Iz:sleep::sleep::sleep:
  11. Ren

    Ren Primum Non Nocere

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    I wasn't aware of this, but this is very good to know. Thank you for sharing.
  12. Firestormm

    Firestormm Guest

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    @Ren Can I ask how you have been able to determine "Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME." Thanks.
  13. Ren

    Ren Primum Non Nocere

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    @Firestormm , I haven't re-read/viewed the following sources in some time - but I noted the "4,500 plus" reference from a 2011 interview with Dr. Vernon:

    "Post: Is CFS a "real" disease? - Vernon: There are more than 4,500 papers in the medical literature that describe disturbed or altered biology in people with CFS, so, yes, the disease is very real."

    http://www.saturdayeveningpost.com/2011/10/24/health-and-family/medical-mailbox/cfs.html



    And also from the following 2012 CDC physician-education webinar (web seminar), Chronic Fatigue Syndrome: The Challenges in Primary Care.


    Within the section, "The Biology of CFS", Dr. Komaroff states,

    "Thousands of published studies now have found that there are abnormalities of the brain and autonomic nervous system; chronic activation of the immune system; that there is a genetic component; that oxidative stress and nitrosative stress and abnormalities in energy metabolism are seen." (19.06)

    http://www.medscape.org/viewarticle/759095




    And from Hooper's Magical Medicine: "...despite approximately 5,000 published mainstream papers that prove them wrong about the nature of ME/CFS, the Wessely School remains obdurate that "CFS/ME" is a somatisation disorder. " (p.48)

    And "Dr Suzanne Vernon... stated on 5th December 2008 that there are now more than 5,000 peer-reviewed articles in the biomedical literature that tell us a lot about the disrupted biology of ME/ CFS, about what happens to the immune and endocrine systems and to the autonomic and central nervous systems. " (p.72)

    "As stated by Dr Suzanne Vernon (see Section 1 above), there are now over 5,000 worldwide peer-reviewed scientific papers (and numerous textbooks) showing that ME/CFS is a complex multi-system disorder involving demonstrable pathology not only of the central and autonomic nervous systems but also of the immune, cardiovascular and endocrine systems, and that on‐going inflammation is a significant feature, with damage to skeletal and cardiac muscle as well as to other end organs including the pancreas and liver." (p.98)


    The 5,000 number is repeated two additional times as well in Hooper's text (p.269 and p.297). But I can't find what Hooper's reference is for this number - besides attributing it to Vernon.

    There is the following 2008 ProHealth interview with Vernon:

    "Dr. Vernon:There are more than 5,000 peer reviewed articles in the biomedical literature that tell us a lot about the epidemiology and the biology of CFS...

    By studying individuals and populations, we’ve learned a lot about the biology of CFS, including what can trigger CFS (e.g., infection) and what happens to the immune and endocrine systems, the autonomic nervous system, and the central nervous system. Not all of these systems are perturbed in a person with CFS and this has helped us realize how heterogeneous CFS really is."

    http://www.prohealth.com/library/showarticle.cfm?libid=14167


    I don't know why Vernon's number decreased over the years, so I went with the more conservative "4,500 plus" - but obviously I didn't stay as generic as Komaroff by simply saying "thousands".

    Do any of our advocates have conact with Vernon? It might be good to hear how she (or even Komaroff) determined their numbers. Does anyone have an opinion about citing this number when we're trying to comment on / communicate the status of ME/CFS? Thanks!
    Last edited: Feb 13, 2014
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ms. Swift,

    Thanks for listening to us and looking into these issues and reporting on them more in depth and more accurately. You are helping Millions of disabled people!

    I don't mean to find fault, but I have to correct one inaccuracy in your article on the Justina Pelletier. I want to clarify that some medical sources do claim that CFS, ME and Fibromyalgia are 'medically unexplained', however this is inaccurate. The etiological cause (such as a virus or toxin) has not been agreed upon for these diseases, but much of the pathophysiology is known and accepted by mainstream medicine, just as in many other diseases which are not considered "medically unexplained" such as Multiple Sclerosis and Alzheimer's.

    You also take it one step in the wrong direction by claiming the diseases "cannot be medically explained" which is even more inaccurate. These inaccuracies lead to just the sort of severe iatrogenic (physician-caused) morbidity (illness) that you are reporting on in this article.
    Ren and Kati like this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I posted a couple of comments on the first article that never 'stuck' or made it through moderation, despite asking them three more times to post it, with the text attached in one. I also posted an encouraging comment on your second article, but it didn't appear. Others, such as Ren, above, have said they had the same problem.

    fwiw, here is one of the comments to your first article:

    Last edited: Feb 19, 2014
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