Tuesday, October 8, 2013

Stop the IOM; Team Up with Gulf War Veterans

Patient advocate Wildaisy has started a petition to stop the Institute of Medicine (IOM) contract to redefine ME. If the IOM contract goes forward, chances are good that ME will go the way of Gulf War Syndrome, which was pathetically redefined at the beginning of the year as chronic multisymptom illness (CMI).  The recommended treatments included cognitive behavioral therapy, graded exercise and antidepressants--the same recommendations CDC gives ME patients now.

CFIDS Association Suzanne Vernon is supposed to be appointed to the IOM committee to study ME. On September 28, I wrote to Suzanne Vernon for a comment. She did not respond. 

Bona fide ME experts have already signed an earlier petition to halt the IOM and adopt the Canadian Consensus Criteria to define ME. Despite the impressive effort, there has been no response from HHS Secretary Kathleen Sebelius. 

If you want to join the effort to stop IOM, here is what the new petition says and the link to it:

"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 supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."


Many Gulf War veterans have been enraged by the IOM's redefinition of their disease.  If ME patients could team up with Gulf War veterans, perhaps their combined voices will be heard.

9 comments:

  1. What a great idea! If anyone has any ideas how to team up with Gulf War veterans, please let me know. I need your help if we are going to stop this IOM contract. Patricia

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  2. Alex Young aka alex3619October 8, 2013 at 5:26 PM

    Thank you Mindy and WildaisyFL. I and others have been discussing this issue of coalition groups for some time, but only recently have we realized the urgency - ever since the fiasco involving HHS and IOM went public. Something can be done with war veterans, who have already been targeted, but other groups may be next in line, including Lyme, fibromyalgia, and possibly even MS or Lupus. If we can create some way of coordinating this somewhere, so advocates can work with focus not randomly, this would be good. Ecoclimber, who is involved in ME research funding, has commented on this a lot on Phoenix Rising.

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  3. There upwards of 28,000,000+ systemically-undiagnosed civilian "CFS" patients (who are suffering & dying of the same GW illness) --- the majority of them do not know that the root cause of their illness is tied to the War.

    To make some serious HISTORY-ALTERING progress in 2013 (instead of herding around in decade-long circles), every CFS, ME, Lyme, & Autism patient needs to join a Gulf War group.

    CIVILIANS NEED TO LEARN ABOUT THE WAR, AND GW ILLNESSES.

    If we can get just 1% of the 28,000,000+ to understand, we'd have over a 1/4 of a MILLION unified people working together.

    If we can get 5%, it would be over a MILLION new advocates.

    There is no doubt it's the reason Drs. Klimas & Baraniuk, for examples, moved out of CFS and into GWS research --- because Gulf War is closer to the root of the problem. Myself included, I no longer support CFS research, and only support Gulf War efforts.

    Let's shake things up --> let's get all the civilian CFSers' to care about Gulf War Illnesses!

    "THE PEOPLE UNITED WILL NEVER BE DEFEATED."

    Dr. Garth Nicolson has testified to Congress ~7+ times now.

    There is an intriguing GWS/CFIDS correlation chart ~1/2 way down the page:

    http://gulfwarvets.com/testimony.htm

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  4. June 4, 2013

    "Gulf War Syndrome is back

    Immediately after the first Gulf War in 1991, this author was an early and outspoken defender of US and allied military veterans returning home with a mysterious and often-fatal disease. Immediately, governments called the victims “crazy”, “financial scam artists”, “cowards” or “hypochondriacs”. Government-funded medical facilities echoed the Clinton administration’s official line that no such disease existed, especially not something being called ‘Gulf War Syndrome’.

    Doctors and government officials alike called the tens of thousands of cases of Gulf War Syndrome nothing more than the age-old result of war – battle fatigue and shell shock. But a suppressed, dirty little secret slowly leaked out of the military and veteran community – soldiers’ wives were now experiencing the same symptoms as their infected husbands. Military couples also began reporting their babies being born with Gulf War Syndrome. And then, over the next two decades, the story and the devastated veterans simply faded out of the headlines.

    Is it contagious? One victim says yes..."


    READ MORE -->

    http://www.whiteoutpress.com/articles/q22013/mysterious-hiv-negative-aids-infects-millions/

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  5. "Introduction & Research Initiatives on ME/CFS & GWI"

    Dr Nancy Klimas and her team of researchers including Dr Gordon Broderick of the University of Alberta as well as Drs Lina Garcia and Dolores Perdomo of the University of Miami present the latest findings from their research on ME/CFS and Gulf War Illness.

    In this first of the series of videos, Dr Klimas discusses the background of her involvement with ME/CFS and Gulf War Illness (GWI) as well as the research projects under her direction:

    • Microarray study of 30,000 genes in a genomic study during exercise to determine what mediates a relapse.
    • Biomarker discovery studies for both ME/CFS and Gulf War Illness (GWI)
    • Dynamic Modeling to determine what might be done to intervene the development of ME/CFS and Gulf War Illness
    • Update on the TeleHealth SMART energy study to determine the impact of cognitive behavioral therapy in dealing with ME/CFS.
    • The development of a Natural History Study to develop a bio-bank of information on ME/CFS
    • The forthcoming Murine retrovirus study for GWI

    Dr klimas' presentation is from the conference "Understanding Chronic Fatigue Syndrome/ME and Gulf War Illness" hosted by Dr Klimas at the VA Hospital in Miami on March 26, 2011.

    13-minutes --> http://vimeo.com/21895434

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  6. "Dynamic Modeling for ME/CFS & Gulf War Illness Interventions"

    Dr Gordon Broderick of the University of Alberta discusses how he tracks the severity of both illnesses on a molecular level. He discusses the measurable and characteristic disturbances which he is finding in the immune metabolic functions, the immune cytotoxic functions and the immune cell signaling functions which differ between the afflicted population in his study and the control group.

    Dr Broderick's fascinating presentation is from the conference "Understanding Chronic Fatigue Syndrome/ME and Gulf War Illness" hosted by Dr Nancy Klimas at the VA Hospital in Miami on March 26, 2011.

    Video duration: 47:56 minutes

    http://vimeo.com/21959186

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  7. Thanks Mindy. A petition was also started before Wildaisy Fl's by Mary Dimmock. It has more background info, but a more obscure title, titled 'Thank you to our ME/CFS Experts'.It is designed to be sent to our experts and Secr Sebelius: "The following thank you message will be sent to the signatories of the letter sent to Secretary Sebelius once at the end after signatures have been collected." WD's petition title is clearer in intent.

    I would urge everyone to sign both petitions, and, if possible share with your community and ask everyone to sign and share.

    I believe that this issue is critical. The potential harm is greater than that caused by the Reeves definition, potentially ruining all future research with a super-wide muddied cohort including mostly depressed, tired people, and supporting harmful or useless treatments for ME like CNT and GET, instead of the focused ME definition supplied by the CCC and MEICC, which both state that CBT and GET are not appropriate treatments for ME.

    Dr Lipkin, Peterson, Kogelnik, de Meirleir and more are on record saying that biomarkers and treatment will be here within 5 years. We can't let an officially sanctioned new useless definition interfere with that.

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  8. here is the link to Mary Dimmock's petition
    http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/

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  9. I agree teaming up with Gulf War vets is the way to go, and of course everyone please stand up against the IOM Contract and push CCC! Thank you Mindy for spreading the message!

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