Sunday, April 17, 2011

10 Letters Campaign for Awareness Day (May 12)

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.


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
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.

· 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

· I will apprise him of the economic losses due to M.E. and refer him to
Leonard Jason's economic loss study
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

· 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.

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

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

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