ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Are you aware we are fighting for our lives? IOM panel Death Panel, is going to change everything i

Discussion in 'Institute of Medicine (IOM) Government Contract' started by readyforlife, Oct 14, 2013.

  1. Izola

    Izola Senior Member

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    :pAlex: And another and . . . . "The wheels of commerce go round and round, round and round . . . .Thanks kid. Is there a gadget to prop me up so I don't look and feel so dead? :confused:o_O:sleep:
     
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  2. Izola

    Izola Senior Member

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    Hey, kid, where are you? I couldn't find page 1. Iz
     
  3. Ecoclimber

    Ecoclimber Contamination? What contamination

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    As I mentioned from the get go when this was just breaking that the only way the government will change their position is someone with sufficient power in the form of a Federal judge stopping HHS administration from violating it's own Federal Statutes, Laws, Rules, Regulations, & the U.S.Constitution. I believe that they are tyring to align the health care policies of the "five eyes" Canada,UK, New Zealand, Australia and the U.S. We are dealing with an oligarchial style of government now; not a democracy as evident in Jewel v. NSA, New York Times Co. v. United States, 403 U.S. 713.

    Emails, petitions,FOIA, OIG, letters, forum postings, blogs will have no effect on HSS. The Patient community has no real power.There must be force greater than HHS and the Executive Branch to change direction. This is either through judical process or a ground swell of social media picked up by mainstream newspapers and this has to be elevated to the point of controversy. Controversy sells papers. So using names like 'Death Panels' Genocide etc in viral YouTubes, graphics are legitimate and useful in building up controvesy in critical mass on social media.sites.

    The bottom line is your best bet is the judicial process. They have the clout to order HHS to cease and desist' It's really you only option now!
     
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  4. barbc56

    barbc56 Senior Member

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    While I don't share all, but certainly do some, of the issues about the IOM. @Ecoclimber, sparked a thought and since I'm not sure where to put this I will just put it here and if it needs to be moved where it might have better impact, please let me know.

    In the states the ADA, Americans With Disabilities Act is taken seriously. Can we get the support of of the ADA part of the government? Apologies if this has been discussed before.

    I used the provisions of the act with my last job and it was quite helpful, especially if employers try to circumvent this process, which is not uncommon but at the same time are fearful of breaking this law.

    When feeling better, I will do some research, to look into this issue..

    http://www.ada.govhttp://www.ada.gov

    The backing of the ADA, would carry a lot of weight with the IOM, as well as credibility with any advocating.
     
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  5. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Have you started talking to yourself now too? Thank God I'm not the only one!
     
  6. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    IIRC, ADA doesn't apply to the government. I think it's the Rehabilitation Act of 1973. I am not well enough right now to look into it.
     
  7. Ecoclimber

    Ecoclimber Contamination? What contamination

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    That is exactly what I am saying Izola. Your're right. If you query chonic fatigue syndrome, the first video that pops up is the Wessely Group message video instead of all the major ME/CFS videos that have been made and up loaded over the last decade. The group that posted the YouTube is out of Utah. This video has received more hits than any other ME/CFS video and sends an ill fated message out to everyone. Why? This is why we must inundate social media with the correct message.

    Why is this YouTube video receiving the most hits? Is it because they tagged it with chronic fatigue syndrome or cfs and we use ME/CFS or ME. This is why I suggested to the patient community to start tagging everything with chronic fatigue syndrome or cfs when communitcating our message to the outside world. The general public will use CFS or chronic fatigue syndrome as keywords in search engines and not ME/CFS or ME!!

    Eco
     
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  8. barbc56

    barbc56 Senior Member

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    I think it does but need to look for more info. Part of what I am asking,, is me/cfs recognized by the ada as a condition qualifing for acommadations, though they may go more by the symptoms. Like I said I need to find more info. If anyone has information let us know.
    Thanks
     
  9. Nielk

    Nielk

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    CFS is accepted by SS disability so I'm assuming that it should be accepted as having limitations.
     
  10. barbc56

    barbc56 Senior Member

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    That'ts great news!

    When I applied for disabity 9 years ago, neither mecfs nor FM were considered conditions to qualify for disability. I do know FM is now accepted but did not realize mecfs is. I am pleaasently surprised.

    Thanks for the info!:)
     
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  11. Ecoclimber

    Ecoclimber Contamination? What contamination

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    Recent blog post on how the VA stonewalled the Gulf War Veterans after the IOM contract
    http://www.91outcomes.com/2014/01/anthony-hardie-what-va-leadership-needs.html

    Wondering where to start?

    1) The January 2012 version of the Gulf War Illness Research Strategic Plan, developed by a consensus of three advisory bodies including the NRAC, RAC, and Gulf War Steering Committee -- and a couple dozen scientists from inside and outside the VA. To date, VA has done little of what's in the plan, and rewrote and distorted the portion on how a new GWI case definition should be developed to meet their own plans to give it to a psych- and stress-focused IOM panel on "Chronic Multisymptom Illness" (CMI) that seeks to lump all multisymtom illness issues from all eras into one big pot. Imagine the potential of success in finding treatments then.... Next to zero. SEE: http://www1.va.gov/RAC-GWVI/VA_draft_strategic_plan.pdf

    2) Written testimony submitted by 14 Gulf War veteran leaders. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/115956730/Testimony-DAMA-Lost-Records-FINAL

    3) My most recent Congressional testimony from March 2013, with a long list of recommendations that included and built on the recommendations in #14, none yet heeded by VA. To date, there has been no response and no action. SEE: http://veterans.house.gov/witness-testimony/mr-anthony-hardie-0

    4) The June 10, 2013 letter from all the Gulf War veterans on the RAC to VA Secretary Shinseki, with a lot of history and recommendations, which built on #2 and #3 above. That letter didn't even merit the courtesy of a VA response, let alone any action on the substantive issues raised in that letter. SEE: http://www.scribd.com/doc/150958485/RAC-Gulf-War-Veterans-Urgent-Letter-to-Sec-Shinseki-06-10-2013

    5) The August 26, 2013 letter from Paul Sullivan and a dozen other Gulf War veteran leaders, many active in this Facebook group, to Dr. Robert Jesse, who was active and vocal in this week's RAC meeting. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/197084024/Sullivan-Jesse-Gulf-War-08-26-2013-2

    The reason why Federal lawsuits are imperative.​
     

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