Monday, May 30, 2011

Advocacy Success in San Franciso!

PRENOTE: A second small yet successful demonstration for the rights of people with ME/CFS was just held. A key goal of these mini-demos is to inspire more of the same; we hope you (those who are able) will hold a mini-demo, too. Only 1-5 people are needed to pull one off, get some press attention and make some waves. Make your own signs, or we can send you our pre-made 25-foot banner. All 3 goals of this Mini-Demo Strategy are found below.

WHO CAME:  On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California.
Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.

SETTING UP:  At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC:
SECURITY:  Security came out immediately in the form of one person. He appeared to be the Head of Security for the Federal Building/HHS. Bobbi told him what they were doing and how she had been told by the city police that they could be on the sidewalk without a permit, as long as they didn't have a loudspeaker. The security officer agreed, took some of the demonstrators' literature and went back inside. It was all very relaxed.

PRESS:  The protest co-organizers, Bobbi and Rivka, a mother/daughter team, had spent the days prior reaching out to the press. Success! The New York Times reporter who has covered ME/CFS in the past came "to say hi" (no article expected, but good to keep relations going) and a San Francisco Chronicle reporter and cameraperson came as well. The resulting article is found here:  Though this article was disappointing in the usual ways, its publication was still good news, as the SF Chronicle is one of the largest papers in the region. Plus, the reporter said she hoped to do an additional story on kids with ME/CFS. And to our knowledge, this is the first time an ME/CFS protest has made news in the U.S.

ACTIONS:  Standing in front of HHS with the banner for 1 hour, the protesters videotaped prepared and spontaneous statements (see resulting video), handed out flyers to passers-by and in a surprise action sang the song, "Clinical trials now!" (Also seen in this 2010 video:

Also surprising, after the demonstration, there was a group meeting for a half hour with Eric Alborg, Regional Outreach Specialist of HHS's Region 9. His boss, who was out of the country, is Herb Schultz, the Regional Director of Region 9. In the hierarchy, Alborg is positioned directly under Schutlz. (Alborg's job main is to implement the new health care program.) Alborg had thought he'd be meeting with just one person, Bobbi, and had not known about the demo in advance. But after checking with someone (we don't know who), he agreeded to meet with the whole group, that is, the two protesters who have ME/CFS and their three family members. Alborg was open to listening and wanted to know why the protesters were there. People talked about the concerns and needs of people with ME/CFS (funding and clinical trials!). The demonstrators put the struggle regarding ME/CFS in the context of HIV/AIDS, linking the possible retrovirus connection (XMRV). This discussion made sense since HIV is historically a key issue in San Francisco, due to a large and politically active gay community. The protesters emphasized to Alborg that HHS should have an understanding of the politics of all this, due to HIV/AIDS. They also told him that the information about this demo, and the meeting with him, would not be limited to the small group he was presently gathered with, but would be rapidly disseminated all around the globe via the internet, and that ME/CFS was an issue that was not going to go away.

Alborg's suggestion to the protesters: 1) Call/lobby local institutions and legislators; 2) build coalitions with groups with other disabilities and chronic illnesses -- groups that have already-established power and influence. (Though he did not say it, one protester went away thinking HIV/AIDS and Autism groups).

Bobbi gave Alborg copies of a letter she had written with her own personal statement on top, followed by a list of basic needs/demands from our ME/CFS community. Bobbi's letters were addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci and Schultz (Head of HHS Region 9). Alborg promised to make sure the letters were given to each.

Wednesday, May 18, 2011

This sort of thing isn't supposed to happen to angels

As I have proceeded through 17 years of having CFS, I have encountered more and more individuals who also suffer from this terrible disease. I have had conversations with people who struggle to have the will to keep going even one more day, seen videos of people who cannot roll over in bed or even speak, people who have not left their homes for decades or have had to move from one home to another year after year because of financial dilemmas that have resulted from this disabling illness. Chronic Fatigue Syndrome is among the cruelest of diseases. There are no words to capture how it takes that moment where the train goes off the tracks, crashing into the earth in flames and makes that moment every moment of your life.

All of this is terrifying to an undefinable degree, but what is most amazing to an equally undefinable degree, is that these same people are consistently the kindest, most generous, caring people I have ever encountered. I see people reach out to others they have never even met with the care and love of a parent or a partner. I see a connection and sense of community, where we are all acknowledging one another's brilliant and bright existence, outside and in spite of this illness. I don't know if CFS simply strikes the bright and the kind, or if the experience makes us so. Regardless, I wanted to share this with all of you who have CFS, and also those of you who don't and may not have the privilege of bearing witness to this community of humanitarians.

A final thought. It strikes me in my heart whenever I hear of another person with CFS that this sort of thing isn't supposed to happen to angels.
But it does.
Millions of them.
And as an angel would, these people gracefully spread their wings and continue to fly about the earth doing what angels do.

Wednesday, May 11, 2011


"To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you:  Have you no sense of decency at long last?" 
by Mindy Kitei, a science reporter who's covered ME/CFS for 20 years

To read this fiery, frighteningly true article about the gravity of the disease and the levity with which it is dealt go to:

Thank you for telling it how it is, Mindy.

Saturday, May 7, 2011

May is ME/CFS Awareness Month!


Put a ribbon on your Facebook profile picture to show your support!

***Once you have placed it on your photo, YOU NEED TO GO INTO YOUR PHOTOS AND CHOOSE THE NEWLY RIBBONED PHOTO AS YOUR PROFILE PICTURE. (sorry for shouting, it's just that everyone misses that part.)
Make the invisible VISIBLE! 

xo♥ amberlin

Friday, May 6, 2011

One man's deciding to come "out of the closet" with CFS

"Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis. " - John Falk

To read the article, click here:

Dr. Andreas Kogelnik’s Talk on Re-Evaluating Chronic Fatigue Syndrome and Immunology

This is an extremely thorough summary of Dr. Kogelnik’s talk “Re-Evaluating Chronic Fatigue Syndrome and Immunology” at El Camino Hospital in Mountain View on April 19, 2011.

Re-Evaluating CFS and Immunology

An Interview with Laura Hillenbrand

Some excerpts:

What advice would you give to others out there who suffer from ME/CFS?
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.

What are some natural treatments and/or ways you use to cope with
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.
Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.
I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.