Time for Action - easy daily advocacy campaign

[jace]

ETA This Action is International, not just for US citizens. This action is ongoing, and not just for a week as stated in the misleading report in your ME/CFS Emergency Action email, sent on 10/4/10 at 21.08.


Thanks to MEZombie for the info

You may remember Rikva, in her Clinical Trials Now video and her one woman action outside the NIH. She was also part of the awesome meeting prior to the XMRV conference between NIH officials and ME/CFS patients.

Check out the video link at the bottom of this post, and consider making this the first thing you do on your computer every morning.

=== Please Forward Widely ===

"Time for Action" Campaign
For ME/CFS Patients, Their Families and Friends

Organizers: Robert Miller, Rivka Solomon, Charlotte von Salis
Contact: bobmiller42@msn.com

On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes. The more they hear from us now, the more they'll listen to us next time we meet. Our "Time for Action" campaign is advocacy made easy -- yet it will have a huge impact.

We ask patients, their families and friends to email, call and/or fax NIH Director Collins and NIAID Director Fauci with this simple question every day, starting today. (Please Cc: emails to Robert Miller at: hebs1reel@yahoo.com)

Dear Directors Collins and Fauci,

What have you done for ME/CFS today? Patients and their families are waiting.

Name: John Doe (or John)
Location: Miami, FL
Time: Sick 12 years

Contact info:
1) National Institutes of Health
Director Francis Collins
Email: collinsf@od.nih.gov
Cc to: hebs1reel@yahoo.com
Phone: 301-496-2433
Fax: 301-402-2700

2) National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
Email: afauci@niaid.nih.gov
Cc to: hebs1reel@yahoo.com
Phone: 301-496-2263
Fax: 301-402-3573

For inspiration, here's our "How To" video: http://www.youtube.com/watch?v=z5eLRxtQLok

ETA I asked Rikva if those of us outside the States could join in, and she said the more the merrier, or words to that effect. She also suggested that we non-Americans write this:
What have you done for ME/CFS today? Patients and their families are waiting, and the international community is watching.

 

[VillageLife]

brilliant!!!!!!!!!:victory:

 

[BEG]

Nicely done! :Retro smile: A small thing patients can do from their recliners and beds. :sofa: We need more of this, and we need to inform every patient.


Do it today and everday and pass it along.

Thanks for posting, Jace.

 

[VillageLife]

yep i've sent my emails
Will do the same again tomorrow!

 

[Lynn]

I've sent them. I was able to set up Outlook to send one every day for a week. It probably would have been just as easy to do it daily but I was afraid I would forget (CFS/ME you know).

Lynn

 

[bakercape]

Would it

make sense to contact Sebelious too. Aren't the CFSAC recommendations given to her underlings? She seems just as guilt for us being ignored if not more so than Collins.
This is an awesome idea. I started my daily e-mails today.

 

[Frank]

I'll send it out to the 467 members of the action mailing list! BTW great job Rivka!

Mailed fauci and collins myself

 

[jace]

I have just received an email from ME/CFS Emergency Action (Hi Frank) saying this action is limited to US citizens and is limited to one week.. Please be aware, Frank, this is the first I have heard of it. Please send another email correcting your mistakes.

As outlined earler, we can all join in, and we should (it's dead easy. Do it first thing every day) There is no time limit yet. Check it out.

 

[mezombie]

Jace is correct.

This campaign is meant to run indefinitely. We hope you will make it part of your daily routine!

And non-US citizens are welcome to join. NIH is the largest funder of biomedical research in the world; it also funds research outside of the US. So if you aren't a US citizen, you should feel completely comfortable sending daily emails with the addition of "The world is watching" or "The international community is watching".

Frank, I've sent you a message hoping you'll correct the mass email you sent out.

 

[glenp]

thank- you I sent mine off

 

[jace]

Frank, I don't have a correction email yet. Please put right your mistakes. This action is open-ended, not just for a week. This action can be taken every day by non-US citizens, see alternative wording above. This Action is not an Aktion. It's a daily, open-ended, international action.

2 days and counting

ETA: Frank, talk to me. Please.

 

[VillageLife]

sending my email message again today.............:victory:

 

[BEG]

Sent mine off today, too, but forgot to copy to Bob. What to do?

Also, I may have missed it, but what goes in the subject line?

 

[jace]

Just make up a phrase, it's better that they all have different subjects. Don't worry about not copying to Bob once, just do it next time. Well done, Brown-eyed Girl.

Such a cute avatar, btw

 

[OneWaySurvival]

I like Bakercape's idea of including Sebelius in these emails. And since her assistant (Dr. Howard Koh) attended the last CFSAC meeting, I included him as well.
So, my list of recipients is 4:
collinsf@od.nih.gov; afauci@niaid.nih.gov; Kathleen.Sebelius@hhs.gov; dinah.bembo@hhs.gov (Dinah is Dr. Koh's assistant who reviews his emails, according to his Harvard bio http://www.hsph.harvard.edu/faculty/howard-koh/. If you prefer, Dr. Koh's email is Howard.Koh@hhs.gov)

Another thought...
For those who want to say more than just the Campaign Question, I don't think it hurts to customize your email so it doesn't feel so much like spam to them. I decided to thank them individually for the recent things they've done for us, and I added 4 major priorities that I've compiled from others in the illness community.

Here's my final product:

Dear Directors Collins and Fauci, Secretary Sebelius and Assistant Secretary Koh:

Thank you for showing recent concern for those of us whose lives are being destroyed by ME/CFS. It is not too late for many of us, but we need your help! I've been watching each of your involvement closely this past year and want to thank Dr. Collins for attending the XMRV workshop last month and sitting through the sessions on CFS and asking important questions.

Director Fauci, thank you for initiating a study with Ian Lipkin regarding XMRV.

Assistant Secretary Koh, thank you for attending the last CFSAC meeting and assuring us that the recommendations will no longer be ignored. Secretary Sebelius, please read these recommendations and act upon them. So many lives depend on it.

The question I ask you now is, what have you done for ME/CFS today?
Patients and their families are waiting, and watching.

Priorities:

1) Establish 5 new ME/CFS centers of excellence, starting with the Whittemore Peterson Institute
2) Fast-track clinical trials
3) Respond to and act upon the CFSAC recommendations (which have been ignored by Secretary Sebelius)
4) Dramatically increase funding for ME/CFS research (currently allocating less than $5 per person for an illness that costs the U.S. economy billions in losses).

Respectfully,
___ in Indianapolis, Indiana
Sick and disabled from ME/CFS for 2 years

 

[OneWaySurvival]

If you forget to copy Robert Miller, you can always forward it to him from your sent items...

Miller's email: hebs1reel@yahoo.com

 

[Cort]

The time frame was my mistake not Franks. I thought the action was going to be for a week - My apologies!

 

[Frank]

Together with Rivka i decided to send out the mail again within a few days or next week. The action will continue for the next 8 light years

 

[RivkaRivka]

sorry for all the confusion! after the mistake of "one week" was already emailed out, instead of correcting it now, i suggested to frank that we wait a week and email an update to everyone saying, "hey, the week of emailing went well, so let's keep it up!"

but charlotte told frank to remedy the mistake right away.

so poor frank got two messages from two of us on the campaign organizing team.

i have now told frank to do whatever it is that charlotte requested.

done and done!

this was an innocent mistake (the mention of only 1 week). but we are all set now and everything is fine.

the campaign is to continue for much longer than 1 wk.

get yr emails out today! call! fax!

we can change the world!!!!!!!!!!!! (aren't i lucky to have a dancing, singing boyfriend? see the video if you don't know what i'm talking about!: http://www.youtube.com/watch?v=z5eLRxtQLok)

appreciatively,
rivka

 

[mezombie]

Yes, everything is fine, Frank got the message out very timely and that's what's important.

Let's keep this campaign going!

For those wanting to add HHS Secretary Kathleen Sebelius, her contact info is:

Kathleen.Sebelius@hhs.gov

Tel. 202-690-7000

Fax: 202-690-6392


And consider using Faxorama (www.faxorama.com) to send FAXes from your computer! No FAX machine is needed and you can send two for free every 24 hours. How cool is that?