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New email to send HHS re IOM action, as of 17 Sept

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sasha, Sep 17, 2013.

  1. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    In a time of tight budgets, why is money being wasted this way? To produce an unneeded definition, which may be unfit for purpose, and may be ignored by doctors, researchers and patients? When we have a potential cure, potential diagnostic tests etc. that need funding?

    The terms of the contract are also critical. Do they have leave to reject a CFS diagnosis? Do they have leave to create a new name? Do they have leave to create several definitions for subgroups? If not then this is a pointless, fruitless exercise in which the outcomes may be both biased and predetermined.
     
    leela, taniaaust1, WillowJ and 3 others like this.
  2. Nielk

    Nielk

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    I agree that there are many questions left unanswered. HHS states that this topic of the IOM contract will be discussed at the n t CFSAC meeting in November. Yet, we found out that they are signing the contract on September 30. How will we have an input then? Why the rush to sign before? Why not wait till it can be discussed openly?
     
  3. readyforlife

    readyforlife Senior Member

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    They have to sign before September 30th because that is when their fiscal year ends and they have to spend the money by then. What a waste of money that we need so much for research.
     
    taniaaust1 likes this.
  4. Nielk

    Nielk

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    Where is the money coming from? There is no money for funding studies like the Lipkin one and there is no money for a regular CFSAC meeting but, there is money for this contract?
     
    alex3619 and WillowJ like this.
  5. readyforlife

    readyforlife Senior Member

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  6. Ecoclimber

    Ecoclimber Senior Member

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    Mercer Island Wa
    After researching this a bit further

    Why this is important to notify your representative

    The Institue of Medicine, IOM, redefined another illness GWI or GWS which is similar to ME/CFS in 2013. Even though the veterans have a strong lobby in Congress, they failed to sway the IOM from redefining this illness.

    Even though the IOM stated that these men and women were exposed to biological and chemical toxins, depleted uranium, particulate matter and infectious agents and the IOM acknowledge them as contributors, and it found it found most compelling the scientific evidence that the prime culprits were neurotoxins — in overused insecticides, experimental anti-nerve gas pre-treatment pills, and sarin plumes from the Air Force’s bombing of an Iraqi weapons plant!

    The committee evaluated all treatments for which there was evidence, including prescription medicines and alternative therapies. On the basis of the voluminous evidence it reviewed, the IOM committee cannot recommend one single therapy to manage the health of veterans with CMI and, further, rejects a one-size-fitsall treatment approach. Instead, the committee endorses individualized care management plans.

    The committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms.

    Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA should fund and conduct studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing, and multimodal therapies.

    "I am very concerned as an ill Gulf War veteran that IOM Gulf War committees and the board overseeing them are disproportionately made up of individuals predisposed toward views of Gulf War Illness that do not reflect current scientific knowledge, including the idea that it is fundamentally psychiatric or psychosomatic," wrote Anthony Hardie, a Gulf War vet and Research Advisory Committee on Gulf War Veterans' Illnesses, in a letter to the institute.


    So you now know what the outcome will be for ME/CFS patient community if you don't contact your respresentative! Legitimate scientific research will be defunded and the AMA medical profession will consider your illness as psycho-somatic.

    Eco
     
    taniaaust1 and Sparrowhawk like this.
  7. taniaaust1

    taniaaust1 Senior Member

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    I know the part about WHO is true but is that part about "all the other countries" classifying it as a neurological disease true too? What countries do do that? (Ive not a clue how its classified in Australia where I are). I think we need to take care that no untruth is told in important letters, I'd like it if someone can answer questions and tell me which countries do currently view it as being neurological?
     
  8. medfeb

    medfeb Senior Member

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    Hi Taniaaust

    Fair enough point.

    Countries either use ICD-10 directly, can create their own 'clinical modification' of the ICD-10 or use the clinical modification of another country.

    If the country is using the ICD-10, then CFS is categorized as neurological at G93.3 under post-viral fatigue syndrome. ME is also categorized there.

    "Clinical modifications" are often used as a way of providing additional detail (additional subcodes) above and beyond what is in the ICD-10 itself in how particular diseases are coded. This allows that country to do more finely tuned reporting. If a country creates a clinical modification, there are standards on the types of changes that are allowed from the original ICD-10. These standards ensure that disease can be reported across countries in the same way. It would be chaos if every country could reclassify diseases in any way they want.

    The countries that I understand create clinical modifications include at least Canada, Germany, Australia, Sweden, Thailand, Korea, the US, probably France and a few others. I have not checked recently, but two years ago, I was able to access the US, Canadian and German ICD-10 clinical modifications and confirm that CFS was classified as neurological in the German and Canadian. I was told at the time that the other clinical modifications also classified CFS as neurological - with the exception of the U.S. I did not go into all these other clinical modifications to confirm this myself

    The next version of the ICD, ICD-11 is in beta release right now. CFS and ME had both been listed as neurological conditions in the beta version until recently when both were removed for some reason. Waiting to see them show back up again.

    Soooo a long answer to your simple question. And more correctly, the sentence should probably read that "Evidence suggests that every other country except for the US classifies CFS as neurological..." or some such. I will update that.

    FYI - Australia's ICD-10 (called ICD-10-AM) are here but not openly accessible. http://www.health.vic.gov.au/hdss/icdcoding/index.htm. I am not positive but I think New Zealand might use Australia's ICD-10-AM

    Hope that helps and has not put you to sleep :)
     
    taniaaust1 likes this.
  9. Nielk

    Nielk

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