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Patient Mini-Demonstration Calls for End to ME/CFS Research Underfunding in Washington

  [ 21 votes ]   [ 5 Comments ]
www.ProHealth.com • September 2, 2010


With the Alter/Lo/Komaroff paper on ME/CFS & MLV-like retroviruses finally published, the time is right for patients to strike while the media attention is hot.

To test ‘the Power of One’, Rivka, a 20-year ME/CFS patient, went to DC with her mom riding shotgun to get some attention for the need to increase government research funding. And - filmed standing with placards in front of the Health & Human Services and American Red Cross buildings - she did.

Now others around the world, from Chicago to Germany to Australia, tell her they’re casting aside their fear of ridicule and standing proud to advertise that, yes, this illness is real, and requires serious attention.

Following is Rivka’s description of her mini-protest, plus the text of her message, which anyone can share, or tailor for themselves to inform their own target organizations.

________________________________________


Dear Everyone Who Cares About People With ME/CFS:

I just held my one-woman demonstration at the American Red Cross national headquarters in Washington, DC (Red Cross collects 45% of all blood donations in this country) and at the national headquarters of the U.S. Department of Health and Human Services, and it was a success.



On the first day of our protests, August 13, 2010, our first stop was the Red Cross headquarters.

Lots of security showed up within minutes of me being there, but I simply educated them about XMRV. :- )

This is how it went: My mom and sister (respectively the videographer and designated driver) started videotaping me standing in front of the front door while people were walking in and out of the building.

A security guard walked up to me within two minutes and said I could not videotape and hold my signs there. I said "What about over there?" pointing to the sidewalk, not five feet away, but still in front of the door. She said she could not stop me from doing that. So I stepped five feet forward and proceeded with my sign holding and talking into the video camera.

Her supervisor showed up a few minutes later and spent all of his time on a cell phone describing to someone else what I was doing. I stopped the videotaping and turned around to ask him, "Who are you talking to?" He told me he was talking to his director. (The director of what, I wondered.) So I asked if he wanted me to talk to the director and tell him/her why I was there, protesting. “No,” was the answer.

So I said, "Do you want me to tell YOU why I'm here? Would you like to see my signs?" (Who wouldn't? They are so colorful!) “Yes,” he said.

So I told him about how long I've been sick (20 years) with CFS and how, finally, medical researchers may have found the potential cause of my illness, a new retrovirus called XMRV [one type of MLV-related retrovirus], and that it may already be in the nation's blood supply infecting new people who get blood transfusions.

I told him how I was there to ask the National Director of the Red Cross to check the blood supply for this retrovirus.

As this went on, lots of people were walking by and many slowed down to read my signs.

Both the security guard supervisor and the original security guard seemed genuinely interested, and the supervisor relayed all this info to his superior via his cell phone. Now done, I went back to my protest and holding of signs for my mom who was still at the video camera.

A few minutes later, I noticed an older man in a more professional suit-type of uniform watching me from another door. In fact, I now saw that there were a total of four security guards hanging around at different spots along the block.

I asked the suited man if he was security. He did not reply. I asked again, and he mumbled something. So I asked if he wanted to know why I was there, and when he said yes, I shared my story all over again, asking him, too, to tell the Red Cross Executive Director that I was there with my signs to ask for the nation's blood supply to be checked for the new retrovirus XMRV, and to screen all donations for this virus, and that I did not want anyone else to get sick like I have been for so many years.

After I was done, the older suited man, an African American, said, “Like Arthur Ashe.”

"Who?" I said.

“Arthur Ashe, the tennis player,” he repeated. “He got HIV from a blood transfusion and died of AIDS,” he said.

"Arthur Ashe!" I suddenly recalled the African American international tennis superstar and racial barrier breaker.

"Yes, exactly!" Then the security director for the Red Cross (anyway, that is who I think he was) wrote down "XMRV" on a piece of paper so that he would remember the exact name to tell the head of the Red Cross, and we said goodbye.

I finished up my videotaping and my mom and I moved on to the national headquarters of Health and Human Services, a few miles away.

There, it was a different story. This huge building is across the street, literally, from the U.S. Capitol Building. We were going to shoot the video by the HHS sign near the street, on the sidewalk, but it started to rain, so we ran to the building's front door and under the cement overhang.

Security was super tight. We were there for about half a minute, getting in place for the shoot, when a security guard said we had to stop. I asked why. She called her superior and about three guys showed up. The head honcho told us we could not shoot the video if the camera was facing the HHS building (and what was the point of shooting the video there if it wasn't?). We were told to move. Period. We did. Nothing. We got nothing on video.

That night, reviewing the less than perfect Red Cross video made it clear we needed to go back.

We decided to consider that day's efforts a practice run. So we drove back the next day, a Saturday, and we shot it all, all over again - this time in front of the HHS sign by the street and back in front of the Red Cross. No problem. After all, we were on the sidewalks this time. All legal.

My reason for doing these demonstrations - my goal - is to inspire other one-person demonstrations around the globe.

Larger demonstrations are too hard to organize, and so many of us can only go out on a random day that we feel strong enough. So in my mind, these mini-protests are a good idea. If we can have dozens of these around the globe - and get media attention for it - we may be able to impact the political situation that has dictated our lives for so long.

Hold your own mini-protest in front of your town hall, government offices, and blood banks. Let's cause some waves, get some press attention, and get some clinical trials and funding for ME/CFS and XMRV research.

FOR THOSE WHO CAN NOT LEAVE THE HOUSE TO PROTEST (and there are many of us):

Please consider emailing HHS Director Sebelius the note I wrote to her asking her to increase funding for ME/CFS/XMRV research and clinical trials. She is reachable here:

Kathleen.Sebelius@hhs.gov
http://www.dhhs.gov/

With hope for our future,
Rivka
Rivka (at) ThatTakesOvaries.org

_________________________

The Statements Rivka Reads in Her Video:
Message to fellow patients, and Message to Kathleen Sebelius


People with ME/CFS:

It has long been a tradition of our democracy that when a people feel their needs and concerns are not being heard by their government they will demonstrate and protest.

This is a tried and true tradition of any democracy.

If we can have hundreds of these mini-protests, like mine (of one, two or five people), happening around the country and globe, in front of our government offices and our blood donation centers and blood banks, we may cause some waves, get some press attention, and get some clinical trials and funding for ME/CFS and XMRV research.

Remember, protests and demonstrations - holding up a sign in a public place stating your views - are part of the democratic process. Let your voice be heard!

*     *    *    *

Message to Kathleen Sebelius

Dear Health and Human Services Director, Kathleen Sebelius:

I have spend way too much of the past 20 years bedridden and homebound with Chronic Fatigue Syndrome, an illness with a belittling name for a disability so severe.

According to the Centers for Disease Control there are 1 to 4 million Americans like me, all sick with ME/CFS.

Every year of the past 20 years, I hoped and hoped that my government would do what a government is supposed to do, and help its people - help me. But every year I am deeply disappointed.

The National Institutes of Health, the NIH, invests $31 billion annually in medical research for the American people. But of that $31 billion, in 2009 CFS research got $5 million - about the same as what the NIH dedicates to Hay Fever, and about one-third of what is dedicated to Psoriasis.

Now, with a newly discovered retrovirus called XMRV that is linked to -and perhaps the cause of - CFS, we have an even greater reason to stop ignoring the 1 to 4 million Americans who are so sick, so desperate, and so in need of help.

Director Sebelius, please dedicate more money to researching CFS and the retrovirus XMRV. Dedicate more money to clinical trials so we can find treatments. And protect the Americans who have yet to get XMRV from blood transfusions, because this retrovirus is surely already contaminating the nation's blood supply.

Please help us.

(And here is a video with a message for you, Director Sebelius http://www.youtube.com/watch?v=ME764z_4vEY)
 



Please Discuss This Article:   Post a Comment 

Go, Rivka!!!!!
Posted by: skeptik2
Sep 1, 2010
Absolutely commendable. How I wish I had been there beside her, supporting her. Thank you, Rivka, for doing for us what we wish we could do with you! Many blessings upon your work on behalf of us all... skeptik2
Reply Reply

Thanks so much from all of us
Posted by: hensue
Sep 1, 2010
I wish we had know it takes one person to rally the troups. We are ready to go if we can. Go together all of who can to Washington and support an End to ME/CFS. You understand I have fibromyalgia but I am xmrv+. Need answers, let us know in advance so we can all try to get together somewhere. At least groups in different parts of the US. I agree Washingtion is the place to go. Could we all try to be there?
Reply Reply

Perception of Public
Posted by: Steviegal
Sep 1, 2010
What she did is CERTAINLY commendable. And, she does mention that some CAN be there and protest and some CAN'T. However, the problem is that the general perception of the public is that if someone is 'well' enough to travel and stand in front of somewhere protesting, that the person can't be 'all that sick'. It's unfortunate but many have experienced that in their own lives, where if, we have a 'few good days' or a period of time of improvement, that folks assume we're now 'well'.......
Reply Reply

Demonstration
Posted by: stschn
Sep 1, 2010
Thank you so much. It must have been very hard to stand for all that time I could never do it but I can email which never seems to do any good but I keep trying. Bless you for what you have done and are doing. J
Reply Reply

Here is my letter
Posted by: Sandy10m
Sep 2, 2010
Folks, Rivka's story inspired me to also write to Director Sebelius. Here is my letter. Feel free to copy/paste/edit and send along as well. Dear Director Sebelius, I was inspired by the story I read about the one-woman demonstration of Rivka, who has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and has tested positive for XMRV, a gamma-retrovirus that has been found in 90% of ME/CFS patients and only 4% of healthy controls. I, too, have this disease, and I have had it for at least 17 years. I am now retired from the military because I could no longer accomplish my duties. I also gave up being a swimmer and a triathlete because of this disease, and I am currently trying to complete college courses to learn a new skill, since I can no longer perform adequately in my former career field. Not only do we have the XMRV research, but the NIH/FDA/Harvard just published a study that said that the more general family of retroviruses called Murine Leukemia Viruses (MLV), of which XMRV is a member, has been found in similar percentages of sick and healthy people. What is even more alarming is that the infected samples from the healthy controls came from people who had just donated blood! According to the Centers for Disease Control there are 1 to 4 million Americans like me, all sick with ME/CFS, and this estimate does not include those that are infected with the virus but currently healthy. For 4 million people, that is 1.3% of the US population. And yet only 0.016% of the NIH $31 billion annual medical research money is spent on this illness. This is appalling and insulting! Director Sebelius, please dedicate more money to researching ME/CFS, the retrovirus XMRV, and the retrovirus family MLV. Dedicate more money to clinical trials so we can find treatments. And protect Americans from getting XMRV/MLV from blood transfusions, because this retrovirus is surely contaminating the nation's blood supply. We don't need another HIV/AIDS scenario. We need to act now. Thank you for your time, SM
Reply Reply


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