ME/CFS/XMRV Demo: One woman protest in Wash DC Aug 13-14 2010

ME/CFS/XMRV Demo: One woman protest in Wash DC, Aug 13-14 2010, in front of the national headquarters of Health and Human Services, and, separately, the national headquarters of the Red Cross.

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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 syndome, an illness with a belitting name for a disability so severe.

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

Every year of the past 20 yrs, I hope and hope that my government will 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 dollars 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 a 1/3rd 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.

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This message goes out to all 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 protest in the streets.

This is a tried and true tradition of any democracy.

If we can have 100s of these mini-protests, like mine, with one, two or three people happening around the country and globe, holding them 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 yr views, are part of the democratic process. Let your voice be heard!

Category:

Nonprofits & Activism

Tags:

• XMRV

[2010tanguera]

From Argentina: I am with you! I´ve got CFS and FM! sufferiing since more than 12 years! I have to work! I need the money, I need tokeep my medical coverage if I do not work I cannot keep my medical coverage. iNo recognition of sikness, no certification to get ""Disability Certificate"", etc. etc. etc.

[CFSDemo]

@2010tanguera

i'm so sorry about how hard it all is! a terrible situation. the most we are public and showing the world our situation, the more awareness we will raise about our illness and disability. be bold!

[CFSDemo]

@2010tanguera

i'm so sorry about how hard it all is! a terrible situation. the more we are public and showing the world our situation, the more awareness we will raise about our illness and disability. be bold!

[Katnet1]

I think what you are doing is great. Posted video on Facebook hoping to get some people together in CA. :)

[CFSDemo]

@Katnet1

GREAT! it would be wonderful if we can hold these mini-demonstrations all over the country and around the globe. you only need 1 person!

[CFSDemo]

If we can have 100s of these mini-protests around the country/globe, we may get some press attention and get some clinical trials and funding for ME/CFS/XMRV research. 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!

[EutuveX]

GREAT INITIATIVE !

as for me...I have been wrong since 1984 ... it was all in my head !

Nowadays," tired" and ready to go, I wish I could leave to my so called doctors, my wore out hat ( the one that IS still on my head ) .. so that they can wear it and finally " feel " and know HOW WE SUFFER !

[go2mikerenzi]

I have a boil on my butt, when are they going to butt boil research?

[RyuBlade1980]

I am in awe of your effort! Really am! I wish you the best of...well of everything!

[8006121]

One more message, I just wish I could go for a decent walk in the forest next to where I live just 10 minutes is too much for me, I feel like I am going to miss out on nature.

[8006121]

If I was a billionaire I would donate all of it to the right scientists, who can hopefully give me and other CFS sufferers a cure.

[8006121]

I have had M.E/CFS for 1 year and 1 month now. I used to exercise for many hours most days during the week, now I can't even go for a 15 minute walk without having for spend 4-5 days in bed recovering. I hope I am not going to have to deal with this for the rest of my life because I want to travel I want to do so many things.

[justinreilly1]

You Rock!!! I know how hard it is to do something active like protesting; so thank you!