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Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

hi all: i purposefully kept it small for a few reasons. i wanted to role model how to hold a demo with just 4 or 5 people, so that folks around the country/globe could see that it is possible, and see that it still will have an impact. also, i was not sure until the day of the demo if i could pull it off. i'm pretty sick. so i did not want to plan something i did not know if i could pull off. even tho i spent 2 wks making the banner. AND i wanted it small so we would not rouse too too much police attention (i.e. i did not want to appear like a threat -- if it is small, they'd be more likely to let it go on, without a permit, which is exactly what happened. if it was bigger, they may not have allowed that). also, organizing people with me/cfs is tuff, tuff, tuff. it is a little like herding cats: we all have brain fog, needs and limits (me included) that make organizing bigger events really hard for the organizer, especially if the person has brain fog and limited energy (in this case, me!). but i'm thinking that a bigger (outdoor, public) one is in order for the next cfsac meeting. -- totally crashed now, rivka

Please join me in sending the following email (or something like it) to President Obama, Secretary Sebelius, and Directors Collins and Fauci. Let's make sure they see the video of the protest that happened outside the front door of the Department of Health & Human Services. Thanks! -- Rivka


TO:president Obama
Contact by web-email:<http://www.whitehouse.gov/contact>www.whitehouse.gov/contact(fill in the information) or by fax at (202) 456-2461


SUBJECT: Video of our May 10th protest at Dept of Health & Human Services

Dear President Obama, Secretary Sebelius and Directors Collins and Fauci,

Representatives of the ME/CFS community were at the Department of Health & Human Services building in Washington, DC on May 10th to protest and shoot this video.


Please ask yourself, what have you done for ME/CFS today? Patients and their families are IMPATIENTLY WAITING. In fact, a million of us have been waiting in vain for decades for our government to help us.

Your name/location
Years sick
Funny, I thought these 6 patients really did so something.

I apologize if I sounded like I was denigrating Rivka's efforts. I wasn't at all. My comment was focused on thinking what would be possible if we had 100 or 500 people doing what Rivka did...Imagine if that happened..

Maybe that's the kind of stuff that would make Director Collins say "we've got to shut them up - and give CFS research 10 or 20 or 40 million dollars".

I think this is a great start - I think Rivka wants much more as well - I imagine you do too omegaman....

Somehow I think there must be 500 or 1,000 people with ME/CFS who are healthy enough living within a 100 miles or so who are healthy enough to do that. Just gotta find them and get them enrolled.
yes, i am hoping for much more! as i said in the write up:

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.
noise, noise, noise. Rivka is making noise. Louder, louder. More noise. As Cort said, as it gets louder, they will want to stop the noise.

Bob Miller is making noise. Rivka is making noise. So many at CFSAC that they had to turn people away because of fire code. Public service announcement being aired. Visits to congressional offices. Visits with NIH officials. PANDORA is making noise with petition to CDC and visits to congressional offices.

Rivka, I am so proud of you. Your courage and reasonableness has served you, and us, well. I appreciate that you show proper respect to authorities, engaging them. You show they have nothing to fear. Peaceful, respectful, yet bold.

The problem, as you found, is that to get news media attention, especially in Washington, you need numbers and lots of prior notice. They had a bomb threat on block of hotel where PANDORA Lobby Day participants were staying and an abortion demonstration, neither got news coverage. News media covers something unusual. Small demonstrations happen every day in Washington, nothing new.

However, two options, you can take the banner to smaller cities. In a city of 10,000 or less, such a demonstration is unusual. And so the news media for that city would more likely cover it.

Also, you can use social media to by-pass news media filter. But to have an impact, you got to get it outside the ME/CFS community. If you could get other groups who have similar interests, to help you spread it, you might have an effect there.

I hate to say it folks, and we may have to give up some turf, but we need to start creating allies with disabled rights groups, etc.

I know some may wish these things were bigger. However, I see a big picture. That guard got message to Sebelius. Dr. Koh gave message to Sebelius of what happened in the CFSAC meeting. President Obama said he would ask NIH what they are doing. So we have the same message coming from top, side, under, outside, inside, and from multiple parts of community. We don't have to all do the same thing. But we are all beginning to work together, and we are largely giving the same message. In fact, a message that is becoming an international message about funding for biomedical research.

And understanding the illness. The same guard likely had to deal with the people pitching a fit that they would not allow them into the CFSAC meeting because of fire code. Had to deal with the people needing cots. ( I say next time, all who attend collapse at once with all needing cots. Say, right at lunch break.... Imagine what that would mean.)

I will do this.... it might make more of an impact than my speech on Tuesday... I believe I was speaking to the choir .... they even said so themselves the next day. What does it take to make things move in Washington DC?? Perhaps the protest route............
When Director Federline refused to put CFS in the "blue book" for social security and said there were three other diseases that week that requested the same thing.... I knew we were sunk.. We need money, we need disability for patients... we need help.... I wonder why Wanda Jones is stepping down??? Maybe the writing is on the wall..
When Director Federline refused to put CFS in the "blue book" for social security and said there were three other diseases that week that requested the same thing.... I knew we were sunk.. We need money, we need disability for patients... we need help.... I wonder why Wanda Jones is stepping down??? Maybe the writing is on the wall..

I don't think Federline is the main/ only decisionmaker for the 'blue book'; rather, he is the spokesperson for Social Security and needs to take views back to SSA and also to go throught the proper processes that are in place for any condition to be placed there. I think the next step would be to find out when SSA plans to review CFS --they said they're in a process of reviewing conditions every 5 years or so -- and make sure people affected by ME/CFS and advocacy groups participate in that process. I am not surprised other groups have done this but that should not deter us and instead make us ask why we didn't do this before. Don't cry over spill milk too long though as the main thing is to keep moving forward.

Dr. Jones says she will be changing her position from day-to-day stuff with CFSAC but it sounded like to me that she might stay involved but perhaps in a different way. The second day they talked about the possibility of making CFSAC into an interagency coordinating committee which gives them different options with dealing with the gov't and at one point, someone handed the Chairman Dr. Snell a piece of paper -- don't know what was on it --- but he looked very pleased. So my speculation (and it's nothing more that that at) is perhaps Dr. Jones will stay on in other ways.

Only time will tell -- this is my interpretation of events.
The process moves too slowly for hurting, sick, fiancially strapped people. I am a late comer on this scene, but knowing that it has gone on for years without major progress bothers me. The Department of Health and Human Services holds the cards and deals them as they see fit......... Would you want to work with this scenario ?????

If Dr. Jones felt that she was going to be truly successful with her objectives, she would not have stepped down, IMO.Stating that she was going to maintain involvement in other ways, was , to me, lip service. I truly felt those that were stepping down that day were frustrated... Maybe I read between lines that aren't there, but that is my personal opinion. That is what I would do if I felt I was hitting my head against a brick wall with no chance of making progress.How many desperate stories does one need to hear ???? This can go on indefinitely with little to no progress being made for our community. That is why WPI was birthed... People felt they were hitting their heads against walls and needed to take matters into their own hands.
Rivka and friends you are all totally amazing, if I still lived over there I would have joined you. Thank you for what you did for us and I hope you all recover from it quickly xxxx
thanks, UKME, and everyone, for commenting on this article. we need more of these demos, and they can happen anywhere in the world, not just in the U.S. let us know if you want us to send the banner to you.

i, for one, am totally crashed. but happy we pulled it off.

but we need more of these demos now!
Looks like your message is getting around Rivka. This was just posted in a group I'm a member of. It looks like it originated from "CEFSFB CFIDS, EI, and FM in the SF Bay Area", a yahoo health group.

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.


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.

If you cannot attend and want us to represent you, please send us your first name (last if you wish), how long you have been ill, how it has impacted your life. Just 3-4 sentences. Someone will read it aloud at the event.


Bobbi Ausubel

Daughter sick 21 years ME/CFS/XMRV

bausubel@yahoo.com; 650-743 4212