Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

[OneWaySurvival]

I am wondering if there are plans underway in the M.E. community to stage a protest outside the building during both days of this critical conference? I was thinking of a bunch of us patients (and friends) laying in anti-gravity loungers, or on mattresses, holding signs (like the Advocates' version of the P2P flyer - made by Laura Vitale), and trying to get it covered by local or national news. If TV crews don't show up, at least maybe it could be filmed by Jen Brea or Ryan Prior for their ongoing film projects.

Anyway, I want to see a protest happen, but I have no experience with organizing. I thought I would contact Caledonia, Jeanette Burmeister, Ryan Prior, Donna Pearson, Jen Brea, Robert Miller, etc. but the only one I've managed to contact is Caledonia, who said they won't be ready for their big Public Relations campaign rollout until January 2015. Is there a good point person for our advocacy community who can get the word out to all these players in our community on short notice?

I do not have a Facebook account, nor do I text or tweet!, and therefore have limited social media impact. I have been sick for 8 years, but I would put my health on the line and try with everything I've got to be there in person with my anti-gravity chair. Anyone who could join me could bring their own anti-gravity chair and/or I could buy some and raise money this weekend to buy several more and supply to those who don't have one. I might be able to bring a few friends to protest with me.

Some patients may wish to be inside offering public comment, but I hope even more will want to be outside protesting.

If I understand correctly, there will NOT be a public meeting for the IOM drafting conference in 2015, and therefore, this could be our last opportunity to stage a protest with high visibility.

I know it is short notice, but I really want our community to do a protest for Dec. 9 & 10. If enormous crowds can gather spontaneously for Ferguson and the Eric Garner tragedy, it seems our community could convince 50 people to demonstrate next week.

I see next week as an opportunity to protest about the govt. ignoring our experts' request to adopt the CCC.

To let the HHS and the public know that we don't agree with their decision to ignore our experts, and their wasting of $1 million of taxpayer money on their own definition that is likely to be unscientific and harmful to patients.

Then next year, when the IOM report comes out, we can find additional ways to protest their presumed watered-down and harmful definition of M.E.

Does anyone out there want to help organize, advertise, and participate in this type of protest?

-OneWaySurvival

Laura Vitale's anti-P2P flyer:

 

[OneWaySurvival]

The protest would occur outside the Natcher conference building:

Here is the info on where the P2P conference is, and how to register for it:
https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/registration

After listening to CFSAC the past couple days, I am just so fired up to not let HHS/NIH railroad us!

 

[Denise]

I am not opposed to the idea of a demonstration but I have questions.
Please take these just as some things to consider as you develop the plan.
These are some of my questions:

How likely is it that you can you be there?
Were you thinking of protesting on NIH (government) property (security is pretty tight to get onto the grounds)? Is it permissible to protest on NIH property?
As I understand it the conference center is separate from other NIH buildings. So who would see the demonstration?
What would the message be?
Who would it be directed to? (public, NIH employees, patients at the NIH clinical center, panel members,?)
Would a demonstration have longer or shorter term impact than well crafted comments submitted by advocates about the content of the panel's report?

 

[Wally]

@OneWaySurvival,

Unless a demonstration has already been planned it would be too late to get a permit for Dec. 9th and 10th. I planned demonstrations in S.F. and Washington D.C. last December and January, so I am very familiar with the process that is required for this type of event. Glad to provide further information if the logistics of organizing this type of event would be of interest to anyone.

Wally

 

[Gingergrrl]

@Wally, do you mean you planned demonstrations for ME/CFS last Dec and Jan?!! How do you get enough people to attend as most are too ill to fly or travel? If the demonstration was already in my city, I would attend but would never be able to fly in my current state of health. How do you get people all in one place who are this ill?

 

[medfeb]

I checked on the logistics on a P2P demo with both Bethesda policy and NIH security .

As Wally indicated, permits were required on the capital grounds in D.C.and in S.F. I think that permits were also required for a demo in front of HHS. But a demo is not required for a permit on public sidewalks in Bethesda - as long as you do not block pedestrian or road traffic.

NIH is another story. NIH is on a campus and you have to go through a visitor center to get onto the campus. No demos are allowed on NIH's campus so you couldn't do one in front of Natcher.

As I understand it, the visitor center is on South Ave off of Wisconsin Ave (Rockville Pike) near the metro stop - check out the map links below. You could do a demo on WIsconsin Ave but it doesn't appear that you will have foot traffic, just vehicular. And the volume of that probably depends on the time of day

This link shows where the visitor center is, the metro, the main road and also gives you an idea of where the Natcher Conference Center is.

https://www.google.com/maps/search/...ive,+Bethesda,+MD/@39.0002401,-77.1033891,16z
or google street view
https://www.google.com/maps/place/N...D!3m1!1s0x89b7c95e85532a0b:0x9bcea22d94b28138

As far as getting people there - that's the real challenge. I did one in D.C. last spring and there were only a few people there. Wally can say how many there were in San Francisco. Especially hard to get people there under any circumstances but especially without a lot of early planning.

 

[OneWaySurvival]

Thanks for the responses and questions. Right now, this thread is just getting started, and because the event is only 4 or 5 days away, a lot of this will have to be spontaneous in nature, and will "evolve" as more people decide to participate.

We would have to do the demonstration off-campus. We would not need a permit.

The messaging can be simple. "Listen to the ME/CFS experts: Adopt the CCC." "Save $1 Million in Taxpayer money. Cancel the IOM contract."

Even though our protest will not be nice, slick, tidy, and perfect...it can be RAW and REAL. The messages may not be carefully crafted, but that's what the official CFSAC response is for. That's what the advocates are doing who are attending the meeting inside the building. Our protest will be outside and will explicitly OPPOSE the P2P workshop which is pushing biased, unscientific, partially "evidence-based", focused soley on fatigue, cherry picked, information that will lead to a corrupt IOM definition. My thought is that some advocates will be doing their part to be heard inside the building, and other advocates can do their part to be heard out on the sidewalk, or from their homes. The more we can speak up for ourselves, the better chance we will finally be heard, either by the public, or by policy makers, or the media, or the government agencies. WE NEED ALL OF THESE THINGS TO HAPPEN.


Here are some more ideas as I put a plan together for myself, to test whether I can in fact be there in person. Hopefully others will consider being there as well. Just show up. Things will happen (most of them good, I hope!). If you can't be there, lend your thoughts or PM me with a picture and your first name and maybe we can make a poster for you.

Tonight and tomorrow (Saturday), I will try to assemble a team of family and friends (maybe 5 or 6 of us) to travel with me next week. I want to buy enough anti-gravity chairs so that each of us can lay in one as we hold up signs in protest. Each of my healthy friends/family would represent someone who is sick, and can't be there in person.

I envision each sign having the picture and first name only of an ME/CFS patient (pictured on one side of the poster), and a big message on the other. The message could be Laura Vitale's awesome graphic (if I can get her permission), or it could be one of the lines I typed above. I also thought about printing off some choice e-mails from the FOIA request such as "no need to respond directly. File the responses" , etc.

FYI, here is some info from Caledonia, who had done some preliminary planning for a protest of this nature, but had to put it on hold because they are still about $1,000 short of having enough money to hire the PR firm.

She said this:
"If you do decide to demo, this is what we had worked out:
Bethesda, Maryland

Intersection of Wisconsin/Rockville and South on the sidewalk just outside the NIH Campus. (You don't need a permit for this. You are not allowed to demonstrate on campus.)

December 09, 2014 at 7:30am - 9am (while people are arriving on campus for the meeting).
Parking is extremely limited on the NIH Campus; they suggest you use public transportation if possible. There is a Metro bus stop at the corner of Wisconsin/Rockville and South. NIH visitor parking is also nearby off of Wisconsin/Rockville.

If you can get it together, please notify Jen Brea so she can have it filmed for Canary In A Coalmine."

Keep the ideas coming, people! @Wally. I would definitely appreciate your thoughts on logistics. Either PM me or post for all to see.

@medfeb I appreciate your great insights. It seems to match up with what Caledonia was saying. Hopefully this can be the biggest one yet, especially if any of us can travel with a few healthy family/friends and we can have each of them represent sick people, ideally with anti-gravity chairs all over the place. Definitely bring your own chairs if you can, and we will try to buy a bunch too.

 

[OneWaySurvival]

It might be easier to plan for Wed. Dec. 10 instead of the 9th. And it wouldn't have to be morning only. For those who function better in the afternoon (like me), we could rotate people in and out. If some of the healthy volunteers (my family/friends?) can agree to be there both shifts (beginning and end of the conference), then it might work to have some pwMEs be there in the AM, and another group in the PM.

It would be great if we could have a presence on both days, but like I said, Wed. may be the more realistic day to get all this together for.

 

[OneWaySurvival]

Shoot, even a sidewalk lined up with 30 empty anti-gravity chairs would be compelling. Using this or some similar concept, there certainly has got to be a way to draw attention to our M.E.-caused disabilities as individuals, and not let it be our insurmountable obstacle to doing patient protests.

Another slogan I've been thinking of is "M.E./Chronic Fatigue Syndrome is about Blood, Brain, and Pain...not fatigue!"

 

[medfeb]

I will be at the meeting next week. Not sure if Jen will be there but her video people will be so if they haven't heard, I will let them know.

I have a 2.5 x 8 ft banner that has pictures of 8 people who died with a brief description of each. The pictures could be printed individually. PM me if you are interested.

The meeting ends at 1:30 on Wed. I expect that patients who attended the meeting will be wiped out but maybe some would be able to participate after. There are also at least a few patients boycotting the meeting who live locally and might be willing to participate.

 

[OneWaySurvival]

@medfeb I am very interested in your compelling 8ft. banner. Do you plan to protest outside, or go inside for the meeting? If you can't be outside, I will need to arrange with you to get the banner ahead of time. I should be able to use actual pwME photos of several friends who would love to be there but can't, but if I need more, I may ask you. That sounds absolutely heartbreaking to personally know 8 who have died from M.E. This all makes me so angry!

I will try to locate a megahorn, but if someone who plans to be there has one, let me know.

Also, if anyone considers themselves both tech-savvy and connected to the well-known advocates discussed in the first post, would you consider reaching out to them and polling them on who would like to plan, protest, advertise, film, or raise some money for next week's protest, that will go toward buying chairs (that patients can keep who show up without one), with any leftover funds going toward @caledonia and her big PR campaign, where they are just a little bit short of getting started in January...I think only $1,000.

 

[Wally]

@OneWaySurvival,

My mistake, I did not realize that the meetings were taking place at the campus in Maryland. It looks like medfed (reply #6) has provided you with a good overview of alternative locations outside of the campus where a demonstration could be held.

FYI - Be sure to check out the weather report for next week because inclement weather can give rise to additional logistical issues in the planning of this type of event.

Sounds like you are very interested in trying to make this happen. It may be tough to get people to participate on short notice with less than desirable weather conditions, but if you have friends and/or family members that you can recruit then you may have access to healthier, more able bodied participants.

I can provide you with information about the types of props used in prior demonstrations, the number of people in attendance at these demonstrations and some other issues you may want to consider. You may also find the "conversation" tool available on the Forum helpful for further discussions.

I need to go to bed now, but PM me if you think it would be helpful to talk tomorrow.

 

[caledonia]

Onewaysurvival - the info from Medfeb is the same as mine, because we were working together on a demo before we had to bag it.

We chose early in the morning on the first day as that would be the time when participants would be arriving for the meeting. They would see the demo and then be discussing it, or at least thinking about it, during the meeting.

Weather - could be a factor. Another reason to possibly keep it short and sweet.

Also FYI - Canary in a Coalmine will not be out until 2017. Ryan Prior has wrapped filming and is in post-production.

Not trying to rain on your parade, just transmitting various facts and considerations. If you can pull it off, more power to you!

 

[medfeb]

Thanks for adding this, Caledonia. I'd also add that we also discussed putting the energy and resources into a demo at a later point

 

[catly]

When the P2P workshop date and agenda was a announced and there was a lot of discussion around participating vs. boycotting. I had thought about doing both by attending the meeting wearing a tee shirt saying #StopP2P4ME or something that. Depending on the room set up you could possibly sit with your back facing the panel-- but they might make you leave. Just a thought. Might be too late to register for the meeting now anyway.

 

[OneWaySurvival]

OK, I've slept on this and I'm more convicted than before that I should lead an effort to protest this particular P2P workshop. We need to protest NOW before the IOM writes their definition (and protest again after). I can draw on healthy friends and my local church family to travel to D.C. next week. I believe these healthy allies will "stand in" for all of us who are too sick to travel and protest in person. These people will do it because they care about us.

I am glad that Caledonia is ramping up her PR effort for 2015, and I understand why next week is too soon for all those resources to be brought to bear now. So many advocates are literally spent right now. They've been fighting tooth and nail to be heard during this IOM process, public comments, CFSAC problems, FOIA law suits, etc. The HHS is trying to wear us down and get us to drop the call of the ME experts to abandon the IOM contract in favor of CCC. They are threatening to set us back 30 years in research. We can't afford to be silent now. So, I am prepared to lead an effort now, and healthy friends can be your physical substitute.

If anyone can please put me in touch with Jen Brea, I will coordinate with her film crew to see if Wed. the 10th is workable for them. Because of short notice, I'm not sure my healthy volunteer group can demonstrate on Tues. the 9th. I need the extra day to pull together posters and acquire anti-gravity chairs, etc. The NIH participants will see us on the morning and afternoon of the 2nd day (with plenty of time to impact them during the workshop), and it can be forever memorialized on film if Canary can do it.

If any other groups can protest on Tues. the 9th at the start of the conference, that would be great too.

In my next post, I will outline my proposed "stand-in, lay down" protest.

 

[OneWaySurvival]

Here is the outline for the Dec. 10th P2P workshop "stand-in, lay down" protest:

• A group of volunteers and pwME's will gather in D.C. on the night of Tues. the 9th at a location TBD (conference room or church or living room of a friend, depending on group size). Here I will show a film or some other way to educate the volunteers that night, so they are fully informed to protest on Wed. the 10th.
• On Wed. the 10th at about 7:30am, we will arrive by subway metro (the Red Line) at the Medical Center metro stop (right outside the NIH campus) and setup a "stand-in, lay down" protest.
• The protest will be visible to the P2P workshop participants in the morning on the way in and the afternoon on the way out.
• If any Patient/Advocate in the meeting wants to mention our "stand-in, lay down" protest, that is up to them.
• Our healthy volunteer group will lay down in anti-gravity chairs or other medical-assistance devices or small mattresses and each volunteer will represent 1 or 100 or 1,000 sick patients with M.E./CFS.
• We will all be holding up posters with pictures of patients on one side and statements of protest on the other.
• The Canary in a Coalmine film crew could film our protest.
• There is a local TV station (WJLA Channel 7) who frequently does stories on advocacy efforts with a program called "7 On Your Side". We can petition them to cover our story. Apparently they are more likely to cover the story if we can provide them some "canned footage" (from Canary or somebody else who possesses helpful, educational film) on our Patient Community. They would presumably show this in addition to footage of our peaceful Protest.
• Please PM me if you can join our protest in person, or if you are too sick to be there but want your picture and first name to be printed on a large poster at the protest. We can exchange emails so I can get your JPEG picture
• Please post a reply on this thread if you can join our protest in spirit
• Once we have a more polished plan with more input from the ME community (today?), by tomorrow I hope we can Share our call on Social Media

 

[OneWaySurvival]

@catly Good thought. I think registration is still open for those Patient/Advocates who want and are able to attend the conference in person and/or submit their public comments. But for our Protest group, by way of principle, we will refuse to participate in the sham IOM/P2P process, and will make our voices heard outside the NIH campus.

@catly I really like your slogan #StopP2P4ME. We can certainly use that.

 

[catly]

There is a group of us who having tweeting using #StopP2P4ME, we've been doing twitter storms every Saturday night around 7 pm eastern time for several months now. The tweets are mainly addresses to officials in NIH, HHS, CDC etc.

You can count me in as being there in spirit for your protest. Good luck with it. I hope you get some media coverage .

 

[OneWaySurvival]

We are still looking for 12 pwMEs who can give us a close-up picture (or a picture of you at your sickest--in bed--or in the hospital, etc.) and a first name that we can use on our 12 posters at the P2P Protest this week. Please PM me so I can arrange to get a jpeg image from you.

I think it would be compelling if our healthy volunteers could each represent a sick patient.

Thanks!

We will post the official protest schedule shortly which can be distributed far and wide on social media.