Protest at Oct. 2011 CFSAC Meeting!

[justinreilly]

I agree that protesting at a relevant govt building is better. CDC is in Atlanta. I suggest HHS building at 200 Independence, SW in DC.

Just a reminder to everyone going to DC, that specifying the quadrant at the end of whatever address you are going to, such as "SW", is vital because there can be four different 200 Independence's, one in each quadrant.

 

[Jill McLaughlin]

What are we protesting?

 

[Nielk]

thanks Justin - this is what we need, I think.

Cort,

This was your response to justinreilly regarding protesting at the cfsac November 2011 meeting.
Can you please explain why you think this is a good idea?
I agree that these meetings have limited capacity for real change but, they are only an advisory committee and I feel it's one platform that gives patients a chance to give testimony and be heard.
I think that by protesting it, we are just hurting ourselves. They can very well stop having these meetings for CFS all together. There is no legal obligation for them to make these meetings available nor to allow patients testimonies.

Can you please explain your position? or anyone else who feels this demonstration is a good idea.

I can understand protesting at the CDC for their gross inactions towards cfs and misinformation on their website.
I don't understand demonstrating at the cfsac. Don't you think that our energy would be much better served by attending the meeting? Having a big show of people and voicing there our concerns in front of the whole committee?

Am I missing something here?

 

[Andrew]

I thought the idea was just to gather some people in front of a building so we could use the photos. Because otherwise, I don't see what there is to protest about the CFSAC meeting. They have no power. They can't even send out a letter in their name to an outside agency. In some ways it's like protesting against ourselves because we have not solved the problem.

But, I see nothing wrong with gathering at the CDC or NIH or similar for the press to take pictures, especially if the angle of rituximab is played up. With such dramatic results from modulating the immune system, maybe a demand could be that our government sponsor research into b-cell depletion for people with CFS, and raise our yearly budget so it's equal to other illnesses that have similar levels of debilitation.

 

[justinreilly]

Niel, it's not a protest against CFSAC, it's a protest against HHS. It would be done at the time of the CFSAC meeting, like the first one led by Rivka was, because that's when people wME are in DC. We can do it at the HHS building in DC (or at the CFSAC meeting if that works out better logistically). If we do it at the CFSAC meeting it would only take a halfhour or so, more at HHS to allow transport time.

I definitely think this would be more effective than spending that time at the meeting. Protests hold the potential for public embarrassment for HHS, whereas attending or speaking at the CFSAC doesn't really. ACTUP didn't get HHS to go from ignoring AIDS to funding it at $17B per year by attending committee meetings.

Val has offered to organize.

 

[Nielk]

Will there be media there to cover it?
How will it effect the people who plan to go and give their personal testimony?
Do you feel that's a waste of time?
Do you think they will continue with these meetings if they are embarrassed by protesters?

 

[Ember]

and raise our yearly budget so it's equal to other illnesses that have similar levels of debilitation.

 

[Ember]

Do you think they will continue with these meetings if they are embarrassed by protesters?

Why would they be embarrassed rather than supportive of protesters? The meeting wouldn't be the object of the protest...rather the occasion for it.

 

[Andrew]

Why would they be embarrassed rather than supportive of protesters? The meeting wouldn't be the object of the protest...rather the occasion for it.

Maybe it would help if someone explained how they plan to protest at an event they are not protesting. What exactly do they plan to do? Because if they disrupt the meeting, it's going split the patient community even more.

 

[Ember]

Maybe it would help if someone explained how they plan to protest at an event they are not protesting. What exactly do they plan to do? Because if they disrupt the meeting, it's going split the patient community even more.

The concern seems to be about the manner of protest. Surely patients giving testimony at the meeting are protesters, speaking up for human dignity. Their words should embarrass those determined not to respond.

 

[Andrew]

Well if the protesters want support they need to say what their plan is. Because this meeting is very important to a lot of patients.

Some thoughts:

If they sit in the audience with signs that assert demands of the DHHS, that does not disrupt the meeting. It asserts positions protesting the DHHS without protesting the CFSAC meeting. But if they stand in front of the Holiday Inn, it comes off as a protest against the Holiday Inn for letting the CFSAC have a meeting there, no matter what the signs say. And if they disrupt the meeting, they are interfering with one of our conduits to the DHHS.

I hope to speak at the meeting. I also spoke with one CFSAC member a few months ago who plans to raise some of the same concerns. If protesters interfere with this, it will be one of worst political moves any pwc has made. It will split the community in a very public way that will cause more harm than good.

 

[justinreilly]

Maybe it would help if someone explained how they plan to protest at an event they are not protesting. What exactly do they plan to do? Because if they disrupt the meeting, it's going split the patient community even more.

I just envisioned it as similar to the past protests in SF and DC at the last CFSAC: just meeting outside for half an hour or so and recording video of a peaceful protest with a banner and a couple of statements by protesters.

 

[justinreilly]

Will there be media there to cover it?
How will it effect the people who plan to go and give their personal testimony?
Do you feel that's a waste of time?
Do you think they will continue with these meetings if they are embarrassed by protesters?

>Will there be media there to cover it?
Hopefully. the protest organizer should contact media. there was no media for the CFSAC protest last time. there was in SF.

>How will it effect the people who plan to go and give their personal testimony?
It wouldn't. I woudn't get too worried about this protest as i haven't seen anyone say anything about distruptive tactics. it may well be underwhelming due to the poor health of pwME.

>Do you feel that's a waste of time?
No, pls see my previous post.

>Do you think they will continue with these meetings if they are embarrassed by protesters?
I think they would. Overall, whatever effect it has on CFSAC, protests will lead to progress for us. we have raised our objections for decades thru 'official channels' and it has not been enough. We need to ratchet it up with increasing pressure.

I have PMd Val, who has volunteered to coordinate to see if she is still able to do it and to come here to join the convo.