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"10 Letters" RESCIND's May 12th Campaign

Discussion in 'Action Alerts and Advocacy' started by sosumi, Mar 4, 2011.

  1. sosumi

    sosumi

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    I saw this on Co-Cure but haven't seen it here yet:

    Post Far and Wide!

    On the cusp of the nineteen year anniversary of May 12th Awareness Day,
    RESCIND is proposing the "10 Letters Campaign" for May 12, 2011.

    Fellow PWMEs and those who stand with us,

    I've been lobbying my congressional representatives about M.E. for two
    decades to no avail. Family members have even participated in the early
    "Lobby Days" with no results. My latest attempt was in alerting my three
    representatives to the "virus ad" in the Washington Post. I received one
    response to it:

    Dear Mr. Greyson:

    Thank you for sharing your thoughts with me. I will certainly keep
    your views in mind should this issue come before the Senate.

    Sincerely,

    Carl Levin

    Why do we keep banging our heads against the wall of congress? Where does
    the buck really stop?

    I remember an interview with President Obama and how he asks his staff to
    bring him ten constituents' letters each evening for him to read.

    I had written to the President some time ago regarding a situation other
    than M.E. After several months I had forgotten about the letter I had
    written to the President but to my surprise I received a small package in
    the mail with the return address of 1600 Pennsylvania Avenue. In it was a
    wealth of information on how to solve my problem, who to contact, etc. So,
    even though it took longer than I expected and I'm sure the President
    probably never saw my letter, it's obvious that his staff did read it and
    they took the time to follow through with an answer for me.

    I am writing a letter this May 12th. Not to my Congressperson or Senators
    but to my President. I would like to suggest that everyone who can,
    patients, family, doctors, healthy advocates, write a letter to President
    Obama as well. Not an email. A real signed letter. Please mail your letter
    so that it arrives as close to May 12th as possible. If we can get enough
    letters into the White House mail box, maybe one of those ten letters
    President Obama reads on the evening of May 12th will be one of ours.

    I'm not going to write up a cut and paste letter. They should all be
    different, genuine and from your heart. I will let you know what I'm going
    to include in my letter and some ideas for you to consider for your letter.

    Of course I will start with my history and the devastation that has been
    wrought upon me by M.E.

    Then I'll apprise the President of the malfeasance and corruption going on
    at the CDC and parts of the NIH. And I will suggest to him whose
    resignations to ask for.

    We need a proper name that reflects the severity of this illness. The
    United States needs to recognize M.E. There is a petition with nearly ten
    thousand signatures at http://www.petitiononline.com/MEitis/petition.html
    stating just that.

    Along with a proper name, we need a proper clinical definition. The
    simplest way to do that would be to adopt the Canadian Consensus Criteria.
    Several of the authors being from the United Sates.
    http://www.cfids-cab.org/MESA/ccpc.html

    We need funding for research into XMRV and related viruses. A proper
    replication of Lombardi et al needs to be done to find out once and for all
    if MuLVs are the cause of M.E. and if not, we need to move on. I'm not going
    to dwell on M.E. (or CFS) in the XMRV portion of my letter. I'm going to
    play up the cancer angle because no one's really afraid of a little fatigue
    but everyone's afraid of cancer.

    We need more funding into the ciguatera epitope that was discovered by Dr.
    Hokama. This neurotoxin biomarker has been found in, I'm told, 100% of M.E.
    patients. It has already received government funding and needs more funding
    to flesh out the cause and cure, be it a virus or radiation poisoning.

    I'm going to ask that the President not rely on the CAA for information
    but to ask for MY thoughts and to look to other organizations such as
    RESCIND, Wisconsin CFIDS, The NCF, WPI, PANDORA and even my own physician.

    I'm going to mention the disparity of funding. According to the CDC, there
    are 4 million M.E. patients in the U.S. And according to the NIH Estimates
    of Funding for Various Research, Condition, and Disease Categories (RCDC),
    anywhere from 4-6 million dollars per year has been spent on research. With
    some years being ZERO! That's about a buck per patient. Obviously these are
    the CDC's trumped up empirical numbers. But higher numbers SHOULD be of more
    concern. http://report.nih.gov/rcdc/categories/

    I will apprise him of the economic losses due to M.E. and refer him to
    Leonard Jason's economic loss study http://www.dynamic-med.com/content/7/1/6
    that concluded the direct and indirect cost of ME and CFS to society was
    estimated to be between $18,677,912,000 and $23,972,300,000.

    The Harvey Alter statement. He won the Lasker Prize for isolating
    Hepatitis C and is the Chief of Infectious Diseases and Immunogenetics
    Section of the Department of (Blood) Transfusion Medicine at the NIH:

    "I'm not a CFS Dr, but have learned a lot in last 6 months. Absolutely
    convinced when you define this by proper criteria, it's a very serious,
    medical disease. Characteristics of a viral disease. If it's NOT XMRV, we
    must continue the research to find out what is.''


    The New York Times article and the Nancy Klimas quote:

    "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
    patients. My H.I.V. patients for the most part are hale and hearty thanks to
    three decades of intense and excellent research and billions of dollars
    invested. Many of my C.F.S. patients, on the other hand, are terribly ill
    and unable to work or participate in the care of their families. I split my
    clinical time between the two illnesses, and I can tell you if I had to
    choose between the two illnesses (in 2009) I would rather have H.I.V."

    Dr. Nancy Klimas as quoted from the Q & A New York Times article "Is a Virus
    the Cause of Fatigue Syndrome?" - posted online Oct 15, 2009

    http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

    And the Dr. Marc Loveless congressional testimony of 1994:

    "I have treated more than 2500 AIDS and CFS patients over the past 12 years.
    and my CFS patients are MORE sick and MORE disabled, every single day, than
    my AIDS patients are, except in the last two weeks of life"

    And finally I will point out Leonard Jason's "Causes of death among
    patients with chronic fatigue syndrome" study.
    http://www.ncbi.nlm.nih.gov/pubmed/16844674

    The address to send your letter to is:

    President of the United States of America,
    Barack Obama
    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500


    I am also contacting the people below and suggest you do the same, if able.
    It will be pretty much the same letter that I write to the President, just
    changing the name. However, the President is the most important letter you
    write!

    Speaker of the House,
    John Boehner
    1011 Longworth H.O.B.
    Washington, DC 20515

    First Lady, Michele Obama
    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500

    Vice President of the United States of America,
    Joe Biden
    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20501

    Dr. Jill Biden
    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20501

    As this is being sent out 2 months ahead of May 12th, this should give
    everyone enough time to put their letter(s) together.

    This is up on the RESCIND website so you can refer back to it there, if
    needed, and for updates on points to be made in our letters.

    Other points to make are welcome. If you email them to me I'll put them up
    on the RESCIND website. Keep an eye on the website for further information
    and updates.

    Make it short and sweet. Make it long and loud. Just make it into his hands.

    Congress isn't paying attention to us. Will the President?

    Jerry Greyson

    Tom Hennessy

    www.rescindinc.org
  2. rescindinc

    rescindinc

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    boca raton, FL
    Thanks Sosumi! and Nice work, Brother Jerry! I Just want to make sure to one and all the really weak M.E. and CFS, GWS, MCSS, FMS and Chronic Lyme Disease patients out there who can barely roll over in Bed what Jerry meant by "10 letters". President Obama has asked his staff to present him with at least 10 letters at the end of every day of the 50,000 letters the White House receives on any given day, so that he can get a feel for what the average American is going through. He wants to hear from People without big monied lobbyists who want to get their point across to the President. Jerry had a brilliant idea to urge people with All kinds of CIND conditions (Chronic Immunological and Neurological Diseases) to pull it together and write ONE letter to President Obama. Make it original. Make it from the heart. The tobacco lobby, or the Gun Lobby can generate 50,000 emails, or 50,000 phone calls, or 50,000 letters on any given day for their causes. Those of us with CIND diseases are often very sick and very poor and unable to hire P.R. firms and expensive lobbyists The only good news part of that is the fact that politicians will pay MUCH more attention to ONE, hand written, Personal letter from a constituent than a 1,000 preprinted form letters. So, Remember you are fighting for your OWN lives. Jerry has given you all a template, and many good links to make the letters original but keeping them with enough common information, that anyone who reads these letters will get the message. I am proud of him and thankful that he took the time and effort to do this. I urge you all to fight for your OWN lives! More details on why we chose May 12th 19 years ago as our International M.E. and CFS, and FMS, GWS, MCSS and Chronic Lyme Disease can be found at our website at www.rescindinc.org. Good Luck and God Bless! xo TMH
  3. markmc20001

    markmc20001 Guest

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    count me in. May 12th I'll mail a letter to Mr President about how much of a joke our illness is.

    thanks for taking action.
  4. sosumi

    sosumi

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    10 Letters Update

    With just a few weeks to go, here are some updated suggestions:

    Is it okay for patients outside the U.S. to participate? Why not? Let's
    show him just what a global catastrophe this is!

    Additional groups he should contact for information:

    The IACFSME


    People within the government that he can rely on for accurate information:

    Harvey Alter

    Shyh-Ching Lo

    Frank Ruscetti

    Sandy Ruscetti


    People he shouldn't rely on for information:

    Bill Reeves

    Tony Fauci

    Elizabeth Unger



    Invite him to attend a CFSAC meeting.

    Include Pat Fero's updated National Institutes of Health Funding for Chronic
    Fatigue Syndrome Grants: A Ten-Year Profile:

    <http://www.rescindinc.org/NIH%20CFS%20funding%203.29.2011%20.pdf>


    Ask him to watch the State of Knowledge Workshop on M.E.:

    <http://videocast.nih.gov/PastEvents.asp>


    Thank you and please keep the suggestions coming! All of this will be posted
    on our site. Keep an eye on the website for further updates.

    Jerry

    Tom

    www.rescindinc.org

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