ME/CFS Demo in San Francisco a Success!

Here is Rivka's report on the recent San Francisco demonstration:
_____________________________________


ME/CFS Demo in San Francisco, CA, USA

at the Dept of Health and Human Services
May 25, 2011

Contact: Rivka (at) ThatTakesOvaries (dot) org

Video of demo: http://www.youtube.com/watch?v=hqwg5ZkmURk

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: http://cfspatientadvocate.blogspot.com/2011/05/hhs-demonstration-may-10-2011.html).

SECURITY:  Security came out immediately in the form of one person. He appeared to be the Head of Security of 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: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/05/26/BANA1JL1AH.DTL 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: http://www.youtube.com/watch?v=8t1Xqp1LDxM).

HHS MEETING:  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.

OUTCOME:  Protesters reported leaving the demonstration and HHS meeting feeling great; like they had done something important, both personally and politically.

* * *

Note from Bobbi, demonstration co-organizer

== Personal statement, given to HHS officials ==

I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"!  Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love. We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans. Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration.  Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.

BAusubel (at) yahoo (dot) com

* * *

Note from Rivka, demonstration co-organizer

== The Goals of Our Mini-Demo Strategy ==

It is my hope that ME/CFS patients will rise up and hold a number of these small mini-demos around the country, at HHS and CDC regional offices, of which there are 20. Demonstrators can use our banner, which we'd ship to them, or they can make their own signs. The 3-part goal of this strategy is to:

1. Get on HHS's radar (get ME/CFS and XMRV patients on HHS's radar).
2. Get press attention (get the patients' perspective in the press).
3. Get the ME/CFS community used to images of people with ME/CFS demonstrating and protesting. Once they are accustomed to these images they won't be as timid or trepidations about going out and doing it themselves (the ones who are able, of course).

Rivka (at) ThatTakesOvaries (dot) org

San Francisco Demonstration Planned Week of May 23

I'm posting this at the request of Rivka.   Please, anyone in San Francisco who is able to join in, contact Bobbi (contact information at bottom of post).

______

... San Fran public demo for ME/CFS/XMRV, next week ....

ME/CFS/XMRV Patients, Families and Friends -- Invisible No More

Sick and tired of:
- your government ignoring you and this illness?
- being belittled by the media for a very real illness you have suffered with for years?
- being invisible?

Be Invisible No More! Join us in telling the government & media that we need more research money dedicated to understanding and treating ME/CFS and XMRV. Join us in a public demonstration to be held outside S.F.'s Health and Human Services building. We'll tell HHS Secretary Kathleen Sebelius to finally help the 1 million sick and disabled Americans with ME/CFS and XMRV.

DETAILS

WHAT:  A demonstration holding a 25 foot banner in front of the San Francisco regional office of the U.S. Department of Health and Human Services. (HHS oversees NIH, CDC, FDA.) This demo will be similar to one held recently on Capitol Hill, Washington D.C., in front of HHS's national headquarters. See video here:http://www.youtube.com/watch?v=_elj8mcd9Ak
WHY: Our goal is to tell the HHS that we are expecting more for ME/CFS and XMRV: More respect, more attention, more research money, more clinical trials.

WHO:  People with ME/CFS and XMRV, their family and friends.

WHEN:  The week of May 23, any day we can find 5 people available. Preference for Wednesay, May 24, or Thurs, May 25, 1:30-2:30 pm. Tell us, when might you be available? Do you need help with transportation?

WHERE:  In front of the HHS building at 90 Seventh Street (Federal Building).

THE ACTION: The large banner reads, "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!" Those who wish can say three sentences about your health, years sick, and your needs, and/or read a bit from a previously drafted statement. An edited video of the event will be made public (YouTube) and presented to HHS. Media will be invited. One of us will deliver a letter to HHS officials.  We will seek a permit from the S.F. Police before hand, if needed.

CONTACT:Bobbi
Daughter sick 21 years ME/CFS/XMRV
Bausubel (at) yahoo (dot) com
(I am the woman on the right of this video: http://www.youtube.com/watch?v=8t1Xqp1LDxM )

Protest!

It can be done!

My friend and fellow advocate Rivka organized a kick-ass mini-demonstration in front of the US Department of Health & Human Services on May 10, while the CFSAC met inside.  Watch her newest video, read her account, and consider doing your own mini-demonstration, especially during May Awareness Month!    

_______

ME/CFS Demo May 10, 2011 -- Dept of Health and Human Services, Washington DC
Contact: Rivka (at) ThatTakesOvaries (dot) org

Video link to demo: http://www.youtube.com/watch?v=_elj8mcd9Ak

On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS), 200 Independence Ave, S.W., Capitol Hill, Washington D.C. They carried with them just one sign, 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!"

The representatives from the ME/CFS community were Kitty Lorenz, Karen Ravitz, Sharon Stapleton, Kat Stephens, a patient from New England, and the demo organizer, Rivka Solomon. They ranged from 21 to 70 years old and came from Connecticut, Massachusetts, North Carolina, Texas and Pennsylvania.

Around 2:15 pm, the demonstrators unfurled their banner in front of HHS's imposingly large building. They stood by the side of the street, thinking they were on what must constitute the public sidewalk, where, in most cases, people are allowed to partake in their civil rights to protest without arrest. However, it was hard to tell where the sidewalk was, given the design and layout of HHS's plaza. But it was a good guess, as the very traffic-y and thus noisy street, Independence Ave, was just a few steps behind the protesters. They choose not to position themselves across the street, on the opposite side of Independence Ave. By choosing to stay on the same side of the street as the HHS building itself, they knew they were taking more of a risk, since this would attract more police attention. The police that circulate around the vicinity of HHS include the Capitol Hill Police, the Washington DC Metropolitan Police, Homeland Security and of course the security for HHS itself. (Just before they started their protest, a cluster of 12+ cops were seen across the street. Later it was learned they were there for *another* nearby demonstration regarding abortion).

The ME/CFS demonstrators began filming themselves holding the banner and reading aloud a statement focusing on the plight of people living with ME/CFS. The statement included demands -- next steps they hoped the government would take. (Statement text found below.)

Within seconds, HHS Security came out of the building. At their peak, there were 7 members of HHS Security standing around watching the protest -- but they never approached the demonstrators. Instead they stood back about 50 feet, allowed the proceedings to continue until the protesters deemed their work done (i.e. the shooting of the video), a total of about 15 minutes. The resulting video can be seen here: http://www.youtube.com/watch?v=_elj8mcd9Ak

After the shooting, the demo organizer, Rivka, walked up to the first tier of HHS Security, the men who had been closest, to thank them for allowing the protest and videotaping to go on uninterrupted. The one plain clothed security official present in that tier (apparently plain clothed equals higher up in authority) grumbled something, and then he and all the other (uniformed) men pointed behind them to two women standing further away. Assuming they were the bosses, Rivka approached the two women and thanked them, too. One was a security officer in uniform, the other was plain clothed, and it was she who was head of security for HHS. The conversation went something like this:

Rivka: Thank you for letting us to protest here.

Head of HHS Security: (grumbling, shaking head, angry)

Rivka: It was legal, right? We were on the sidewalk.

Head of HHS Security: No. No --

Rivka: (interrupting) But I spent last week calling the Capitol Hill Police, Washington DC Metropolitan Police and Homeland Security, trying to find out who has jurisdiction over the sidewalk in front of HHS --

Head of HHS Security: (talking at the same time) No. No. No. We have jurisdiction.

Rivka: (interrupting) And I talked to Commander xxxx from Homeland Security  -- did he call you and tell you about us?

Head of HHS Security: No, he did not call.

Rivka: He said he wouldŠ? Or I thought he said he'd let everyone know. I mean, uuuh, are you head of HHS Security? He told me your name (drawing a blank) --

Head of HHS Security: Yes, I am xxxx xxxx.

Rivka: (nervous, but realizing that actions speak louder than words, and they *had* allowed the demo to take place) -- and Homeland Security Commander xxxx said the Washington DC Metropolitan Police had jurisdiction over the sidewalk, but that we'd --

Head of HHS Security: (angry, shaking head) No, if you had been on the other side of Independence Ave, that would have been legal.

Rivka: -- that we'd be fine protesting on the sidewalk as long as we did not do anything too outrageous.

Head of HHS Security: Not here. You need a permit here.

Rivka: Oh. Well, we really appreciate it. We came from very far away --

Head of HHS Security: (still shaking her head, but maybe, slightly, warming a bit?) I know.

Rivka: -- and we're very sick. Will pay a price for doing this demonstration. Could be bedridden a long time after thisŠ

Head of HHS Security: I know, we had to put out cots for those at the meeting. [She meant CFSAC, happening inside HHS that day.]

Rivka: Right. Exactly. Well, uh, thank you again, we appreciate it.

It was clear she had cut us some slack by allowing us to demonstrate uninterrupted and without a permit. Rivka walked back to the protesters packing up, then did an about-face and returned to hand the Head of HHS Security the protesters' informational one-pager (same as what was spoken into the video), asking her to give a copy to Sebelius, and adding, "Could you please tell Secretary Sebelius that this happened, that we were here today?"

"Oh, she'll be hearing all about this, all right."

BINGO! SUCCESS.

Goal #1 Mission Accomplished: Put Sebelius on notice that she is being impatiently watched by patients and their families. After years of her ignoring the CFSAC recommendations, after her refusals to meet with representatives from the ME/CFS community, she will now most definitely hear (from the head of her own security team) that we exist, that we were on her home turf, unfurling a 25 foot banner, demanding attention, respect, action.

Goal #2 of this demo: Inspire ME/CFS patients to make their voices heard in mini protests everywhere; to not wait for that elusive big demo to be organized by someone else, but to instead (for those who are able) get out in public and just do their own mini-demos around the U.S. and globe. Goal #2 will be accomplished, hopefully, by folks viewing this video of the HHS May 10th demo:  http://www.youtube.com/watch?v=_elj8mcd9Ak
A hearty "Thank you, you were amazing," to the HHS protesters. They were brave, ready for action, fun and quite photogenic individuals who signed on just days before, or the day of, the demo. At least 3 of the 5 are MCWPA volunteers.

A special thank you to Robert, a wonderful demo-collaborator who knows how to make a great banner (banner-making video:http://www.youtube.com/watch?v=dcxtgyVuXYI )

The biggest thank you, however, is reserved for those who will take the next step, those who will hold their own mini-demos. It does make a difference, and it will have an impact. In the U.S., there are plenty of places to demonstrate:

- 10 HHS regional offices (http://www.hhs.gov/about/regionmap.html) in Boston, MA; New York; Philadelphia, PA; Atlanta, GA; Chicago, IL; Dallas, TX; Kansas City, KS; Denver, CO; San Francisco, CA; Seattle, WA.
- 10 CDC satellite offices in Anchorage, AK; Cincinnati, OH; Fort Collins, CO; Hyattsville, MD; Morgantown, WV; Pittsburgh, PA; Research Triangle Park, NC; Puerto Rico; Spokane, WA; Washington, DC

Each of these sites is calling for a small group of 1 to 5+ ME/CFS patients and their families to stand in front, on the sidewalk, demanding to be heard -- even for just 15 minutes. Each head of security of each site will be mandated to let their national headquarters know that there was a person there that day, holding a sign in front, protesting HHS/CDC's policies on ME/CFS. Eventually, with enough mini-protests, this will impact policy.

If not you, who? If not now, when?

If anyone wants to use our already made banner for their demo, we'll ship it to you.

==  Organizer's Costs Prepping for Demo (Money & Time) ==

1. Bolt of cloth (40 feet): $38.56
2. Red and black paint: $13.17
3. Paint brushes: $7.99
4. Popcorn for late night banner making: $3
5. Flight to Washington DC: $169.80
6. Taxi to Health and Human Services (HHS) demo: $31.10
7. Return trip Metro card: $3.40
8. Banner making: 2 wks.
9. Calls inquiring which police has jurisdiction over the sidewalk at HHS: 6 hrs.
10. Pitching to the media: 2 days. (Media that came: None).
11. Trying to get a 5 minute meeting with HHS's head of Public Affairs: 4 hours. (Minutes approved: None.)
12. Writing script/statement for the video; also served as the handout for the press (that did not come): Half a day.
13. Expected post-demo relapse (based on previous post-demo relapses): 6 wks in/near bed.
14. Influencing the U.S. government's ME/CFS policies and funding allocations: Priceless!


== Statement Read Aloud at Demo (and handed to HHS staff) ==

Why are we protesting at the Dept of Health and Human Services?
Advocating for people with ME/CFS -- Chronic Fatigue Syndrome
o  We are Americans who have spent much of the past 10-30 years bedridden and homebound with a severe disability that was given a belittling name by our government, Chronic Fatigue Syndrome (CFS).

o  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the full name of our illness.

o  It is an "invisible disability": We often look fine, but are severly disabled, many of us are unable to leave bed.
o  This belitting name, Chronic Fatigue Syndrome, sounds like we are "just tired" and thus it does not reflect the seriousness of our disease. But it certainly makes it easy for our government, medical community and media to dismiss and ignore those who suffer with it.
o  However, if you have ME/CFS it is not easy to ignore. It stops your life. We lose our ability to work, attend school or have a social life. Many of us are bedridden and using wheelchairs. Some of us have died early from leukemia, other cancers or health complications.

o  There are 1-4 million Americans with this illness --17 million people worldwide.

o  ME/CFS drains $18 billion to $23 billion annually from the US economy.

o  The US government, media and medical communities have delegitimized the illness and falsely psychologized patients.

o  This has resulted in very little federal money spent on research to discover the cause, treatments or cure of this illness.
o  Then, in 2009, there was a research breakthrough, and scientists found a retrovirus (called XMRV) linked to CFS. A retrovirus is a virus that never goes away (like HIV).

o  Still, the FDA has not banned people with ME/CFS from donating blood (the Red Cross has).
o  Today, we are here protesting to demand that Obama and Sebelius (Dept of HHS):
- Protect the nation's blood supply: Ban peole with ME/CFS from donating blood.
- Fund research via Centers of Excellence just for this illness, including the Whittemore Peterson Institute (the lab that discovered XMRV's link to CFS).
- Fund fast-track clinical trials for treatments, medications.
- Act on the recommendations of CFSAC (the Chronic Fatigue Syndrome's Advisory Committee). They have ignored these recommendations for years, while patients and their families suffer with a devastating illness.

Let Government Agencies Know the CAA Does Not Speak for You

Petition–CAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize the CAA is not our voice.   The petition is on Change.org and I urge you to sign it by going here.

---

The text of the petition:

Targeting: National Institutes of Health, Centers for Disease Control and Prevention, and Chronic Fatigue Syndrome Advisory Committee

The CFIDS Association of America has proven itself to be an inadequate representative of our illness.  The following petition is designed to be presented to the NIH, CDC, and CFSAC.  Our goal is to present it at the May 2011 CFSAC meeting.

Recognize that the CFIDS Association of America is not our voice.

Greetings,

We the undersigned are patients who have been told by our doctors that we have “Chronic Fatigue Syndrome”, advocates for our loved ones who have been diagnosed with “CFS”, and individuals who have otherwise suffered under the constraints of the label “CFS”.
As such, we ask that you honor our voice. Collectively, the undersigned DO NOT RECOGNIZE the CFIDS Association of America as being our representative agency, nor as being capable of advocating properly for our illness.

Over the last few decades, we have implored the CFIDS Association of America to advocate for the illness that was given the “Chronic Fatigue Syndrome” label by the Holmes Committee … the outbreak of what was most likely Myalgic Encephalomyelitis in Incline Village, Nevada.

Instead, the CFIDS Association of America has maintained a steady inclination towards advocating for the CDC’s version of a mythical cohort of chronically fatigued people. The CFIDS Association of America has failed repeatedly to portray our illness as the devastating entity that it is, choosing instead the middle road and collaboration with the false science that has been built around the many fatiguing illnesses that have been lumped together under the CDC’s “CFS” umbrella.

For years, CFIDS Association of America was a CDC contractor, accepting millions in funding and in return collaborating with the CDC in the effort to brand CFS as a fatiguing illness.

Development of the SPARKS awareness campaign in conjunction with the CDC produced a campaign that included elements such as the traveling photo exhibit depicting people who looked tired. There were no pictures of what this illness actually does. Other elements included banner ads directing people to the CDC website for further information, a press conference in conjunction with the CDC and promoting the CDC as a reliable source of information on CFS, and a patient brochure that focused heavily on cognitive behavior therapy.

In the March 2010 newsletter, CAA included an article by Alex Howard entitled “The Art Of Pacing”, in which we were told that patients did not understand what may be required for “recovery”, and that not pacing properly will slow down or hinder our recoveries. The article has since been replaced due to patient outcry.

Recent commentary by the CFIDS Association of America in response to the PACE Trial indicate that the CAA still sees CFS through the eyes of the CDC’s chimera of emotionally induced illness.

In the process, our voices have been lost. It has not been until the advent of social media that the sickest of us have been able to advocate for ourselves. But social media has interconnected us, and allowed us to watch as the CFIDS Association of America consistently fails to represent our needs.

Interaction with the CFIDS Association of America on social media has given us the opportunity to question the Association repeatedly. Their response to us has not been satisfactory. Their response to changing science has not been satisfactory. Their response to our requests to address the upcoming issues has not been satisfactory. Their responses to issues as they unfold in major news outlets has not been satisfactory.

We ask that you no longer rely on the CFIDS Association of America as “our voice”. We have our own voice, and it is not that of the CFIDS Association of America. With today’s technology, the vast patient population can be interacted with directly. We ask that you do so.

More on Steps Toward a Congressional Hearing

One of the best ways to build momentum for a Congressional hearing is to cultivate a relationship with your Representative and Senators, especially those on the committees listed in my earlier blog post.

Groups or individuals can do this by asking for a meeting at their Representative's or Senator's local in-state or district office. Try calling and asking for the staff person in charge of health for such a meeting.

Explain that you have a disease that was investigated by the CDC in the mid-1980s but that federal research into it has been derailed from the original cohort and subsequent pandemic.

Bring some information with you to the meeting that summarizes the situation but isn't overwhelming. Many members of Congress know little or nothing about our disease, or are misinformed. Start making them aware of the politics involved by handing out copies of something like Hillary Johnson's Op-Ed piece in the New York Times:

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&pagewanted=all

After the initial contact, it's very important to continue to call, email, and visit and provide more information.

The idea is to keep up a sustained campaign of engagement, even if it is simply a semi-monthly email to the health staffer.

For those who aren't able to get out, I'd suggest calling  and getting the name of Washington, DC legislative assistant in charge of health matters. Then keep in touch by email as outlined above.