“We will speak our truth” - Susan Kreutzer Goes to Washington, DC

Susan Kreutzer at the White House: Image by Nigel Lyons
 http://www.nigelyons.com/

By Erica Verrillo

On Tuesday, December 10th, Susan Kreutzer continued her campaign to draw attention to the plight of nearly one million ME/CFS patients in the US, by taking her cause to the nation’s capital.

As fate would have it, December 10th was the day Washington experienced one of its rare snow storms. Federal offices were shut down, but that did not prevent Susan from following her plan.

The timing of Susan’s visit was crucial. December 10th and 11th were the days scheduled for the semi-annual meeting of the CFS Advisory Committee (CFSAC – pronounced “sieve-sack”). This year, for the first time since its inception in 2003, the meeting was to be held as a webinar.

In spite of the fact that the CFSAC meeting was canceled that day due to the weather, Susan set up her table at the entrance to HHS headquarters and displayed a scroll with 3,000 signatures from a petition demanding the cancellation of the IOM contract. Nigel Lyons, a capital area cinematographer, was the only person to accompany Susan. The snow was falling heavily, but Nigel filmed until he could “no longer hold the camera.”

After submitting two petitions totaling 6,000 signatures for delivery to Secretary Sebelius, Susan tried to set up appointments with representatives on the Hill. Only one, Congressman John Garamendi (D-CA), had an opening.

Wednesday found Susan at the Rayburn House Office Building, where she met with Emily Burns, Legislative

Image: Nigel Lyons
http://www.nigelyons.com/

Correspondent and assistant to Representative Garamendi. There, Susan made the case for increased funding for researching ME/CFS.

“Male pattern baldness gets $16 million a year in federal funding,” she said, “while ME/CFS gets only $6 million.” The contrast between an illness that leaves people confined to their beds with one merely affecting vanity could not have been made more succinctly. Nor could the pleas of the ME/CFS community to “take us seriously” have been more concrete than the two petitions Susan handed to Ms. Burns that morning.

Susan intends to make another trip to Washington on January 26, during the week of the State of the Union Address, to finish what she started – handing the two petitions to 20 additional representatives.
In a final statement, Nigel filmed Susan in front of the White House, where she made her purpose clear. “For people who are in bed, and who can’t get out here, we are going to find a way for you to have a voice.”

“We will speak our truth.”

This article first appeared on ProHealth.

Demos in San Francisco and Washington, DC - Can you come?

Below is a Call to Action posted by Susan Kreutzer on ME/CFS Forums. Anyone who is in the Bay Area on Monday or in Washington on Tuesday is welcome to attend. The demonstration will take one hour. Afterwards, Susan will be hand delivering three petitions to HHS and to her Representatives. (You can still sign them!)

West Coast Event:
WHEN: Monday, December 9th, 10AM
WHERE: 90 7th St., San Francisco

Hope to see you there!

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To All My Fellow Canaries, 

One of the best ways for multiple voices to amplify a message is by taking the message out into public view using our “outside” voices. It sure feels to me like the ME patient community is long overdue in staging a public demonstration to shine a spotlight on the U.S. Dept. of Health and Human Services (HHS) contract with the Institute of Medicine (IOM), as well as addressing the pitiful amount of funding and resources that the U.S. Government has allocated to this illness. 

If you feel the same way as I do and you are interested in joining me in San Francisco on December 9th and/or in Washington D.C. on December 10th for a series of demonstrations to very publicly raise your concerns with the IOM/HHS contract and funding for this illness. Then I welcome you to join me in together raising our voices in support of ME (CFS) patients throughout the world.

I am handling the logistical side of the planning of these demonstrations, which includes the location in downtown S.F. of the Regional Office of HHS, the headquarters of HHS located in Washington D.C., and the U.S. State Capitol and White House, also located in Washington D.C. 

I will have props to assist us in getting out our message, as well as alerting media outlets of these planned demonstrations. On December 10th, I will also be hand delivering the online IOM/HHS petition (on behalf of Patricia C.) to HHS Secretary Kathleen Sebelius, select members of Congress and President Obama at the White House. See,

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

I will be in S.F. in front of the HHS S.F. office on Monday, December 9, 2013 at 10:00 am. The following day (Tuesday, Dec. 10th) I will be in Washington D.C. at HHS headquarters at 9:00 am. At approximately10:00 am, I will move a short distance up the street to the nation’s Capitol. Finally at approximately 11:00 am I will move to the White House located approximately 12 blocks from Capitol on Pennsylvania Avenue. I will try to capture the events on both of these days in photographs and on video (subject to the number of extra pairs of hands available on either of those days) to share these activities with patients (and others) who want to support these demonstrations, but are unable to attend in person.

For more details about the demonstrations scheduled for December 9th and 10th, please contact me through this thread on the Phoenix Rising Forum, or the posting I have made on the MECFS Forum, or directly through my e-mail address at WallaceAlvinCleaver@gmail.com.

In addition to the HHS's headquarters in Washington D.C., there are 10 other regional offices spread across the U.S. in the following cities: 1) Atlanta, 2) Boston, 3) New York, 4) Philadelphia, 5) Chicago, 6) Kansas City, 7) Denver, 8) Dallas, 9) San Francisco and 10) Seattle. See, http://www.hhs.gov/about/regions/ and http://www.hhs.gov/about/hhh.html. If you are interested in holding a similar demonstration at one of these locations, I would be glad to share with you the steps required to set up such a demonstration..

No matter what size of a group shows up to demonstrate, even a small group can make an impact on a wider audience if their message is delivered with clarity and passion. We need to be able to find ways to interest the media into covering our story, so we can leverage the reach of their audience to our advantage. As well as using social media to spread our message even if many patients can only dream about participating in life outside the confines of their home/bed. We already have seen how this type of a demonstration can bring much needed awareness of this illness to mainstream media outlets as demonstrated by patient advocate Rivka Solomon in the 2011 demonstrations she planned.

ME/CFS Activists Take to the Streets of Washington, DC

This article by Llewellyn King appeared today on the White House Chronicle. King has been a long-time advocate for people with ME/CFS. He has repeatedly stressed the need to take action in Washington, DC, where it will have an impact. On December 10, a group of activists will be doing just that.
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David and Goliath, or, the Sick and the Bureaucracy

By Llewellyn King, White House Chronicle, December 6, 2013

Malcolm Gladwell, the New Yorker writer, has grown rich with a series of books exploring the sociological dimensions of success and failure. In his latest, “David and Goliath: Underdogs, Misfits and the Art of Battling Giants,” Gladwell celebrates the many Davids who triumphed over the odds because they were nimble and resourceful.

If he wants to observe a classic David-versus-Goliath rumble, Gladwell might want to go to Washington on Tuesday (Dec. 10). He will see a frail woman go up against the federal government with a humble petition and a small following of mostly very sick people.

Her name is Susan Kreutzer and she suffers from the debilitating and mysterious disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, which is the name patients favor.

Kreutzer and others will begin their demonstration at 9a.m. outside the headquarters of the Department of Health and Human Services on Independence Avenue, where she will hand over a petition. Then she will move up the street to Capitol Hill to demonstrate and hand-deliver petitions to members of Congress. She will end her day of petitioning her government outside the White House.

Kreutzer has no idea how many, if any, demonstrators will join her, but she assures me she has the required permits to demonstrate. Another time, only six demonstrators turned out, but they unfurled a huge banner and stood on the street telling the oft-ignored story of their suffering to anyone who would listen.

Telling your story in Washington without a big-bucks lobbying firm or celebrity friends is not an easy assignment. Not only is there the high chance of being ignored but there is also the chance of being discounted as one of the apocalyptic “end of days” proselytizers, or those who believe the CIA has it in for them and who habitually assemble at the White House and elsewhere. In other words, it is easy to be dismissed as a “crazy.”

But Kreutzer, who will have a warm-up demonstration on Dec. 9 in San Francisco at the HHS offices there, believes in the strength of small voices, of a murmur in the cacophony of Washington petitioning. “I feel I have to do this,” she said.

This year, the victims of CFS are particularly upset with HHS and its dependent agency the National Institutes of Health. They are fuming at the decision of NIH to seek a new clinical definition of their disease, supplanting the Canadian Consensus Criteria, which has been the diagnostic gold standard for researchers who are deeply committed to finding a cure for a disease that affects as many as 1 million Americans and another 17 million people worldwide.

It is a disease that simply confiscates normal life and substitutes an existence in purgatory, where victims can be confined for decades until death. Sometimes they will be so sick they must lie in darkened rooms for months or years; sometimes they can function for a few hours a day, usually followed by collapse. Dysphasia — word confusion — increases. Lovers leave, spouses despair and the well of family compassion runs dry.

The first and major complaint of all those in researching the disease and those suffering from it is that NIH spends a trifling $6 million on this circle of hell that could have been invented by Dante.

The second and immediate source of anger laced with despair is that NIH has, apparently arbitrarily, decided to have the clinical definition of the disease reclassified by the Institute of Medicine and has diverted a precious $1 million to this purpose. Thirty-six leading researchers and physicians from the United States, risking retribution in funding, protested the move but were ignored. They were joined by colleagues from abroad, bringing the blue-ribbon protesters to 50.

Still nobody knows why the move to reclassify the disease. One school of thought is that NIH would like to abandon the current and well-accepted diagnostic criteria, known as the Canadian Consensus Criteria, in order to treat the disease as more of a mental one rather than a physical one.

I approached HHS for a comment and for a word with Dr. Howard Koh, the assistant secretary in charge, but have received no response.

Will this David, Susan Kreutzer, fell this Goliath, HHS?

— For the Hearst-New York Times Syndicate