Thursday, May 1, 2014

What I Want for My Birthday

It's been a long, hard winter, but May is finally here, and soon I will be a year older. As it happens, this year I am sharing my birthday weekend with mothers  - and with Florence Nightingale.

Normally, I don't ask for anything for my birthday. The older I get, the less I need.

But this year there is something I want.


On the morning of Monday, May 12th I will be heading to the regional HHS headquarters in San Francisco to join a group of fellow demonstrators. We will set up a line of empty wheelchairs in front of the Federal Building at 90 Seventh Street, and we will place photos of people who have died of ME in those chairs. We will pin blue ribbons to our clothing, and hold up banners. Some of us will bring flowers and candles, and others will bring signs. We will deliver petitions to our representatives and to HHS.

At the same time, on the other side of the country, Mary Dimmock will be spreading the Banner of Hope on the lawn across from the Capitol Building in Washington, DC. The Banner is a 65-foot collection of pillow cases, each one made by someone with ME, bearing their name, dates of illness and artistic touches. It is a tribute to all those who have been bedridden by this disease.

If you are in the Bay Area, please join us in San Francisco. Contact:

If you are near Washington, join Mary at the Capitol. Contact:

Watch, Share, Tweet

Most of you who are reading this won't be able to be with us physically. But you can cheer us on, even from a distance. The San Francisco event will be live-streamed and posted on Youtube. You can watch it, and share it. You can tweet about both events.

You can help spread the word by liking the post about this event on my Facebook page. You can reprint this blog post. You can let the world know that Mary, and Susan, and Johannes, and Bobbi, and Erica, and all our friends will be standing there, representing a million people who can't.


You can write your Senators and Congressmen to let them know that you are ill, that your needs are not being served, and that you vote. Click HERE.

Say something like this:
I am a constituent who is ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. In spite of affecting over a million people in the US, this is a disease which has gotten very little funding over the past three decades. ME is not a benign disease. It has disabled hundreds of thousands of people in the US, and, in some of the more severe cases, has been fatal. The economic loss is calculated to be $17-23 billion dollars annually. Please ask NIH to allocate more funds to study this illness, and to help find a cure.
You can write a letter to the editor of your local newspaper. Tell them it is May 12th, and explain why this day is important to you.


You can join these Thunderclaps, and amplify our voices a hundred thousand times over.

Stop the IOM, Adopt the CCC

May 12th International Awareness Day

Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM


You can light a candle, and remember that you are not alone.

That is what I want for my birthday.
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