Myra McClure off the SEP! Yea Us! Now lets get some actual scientists on it!

Blog entry posted by justinreilly, Feb 7, 2011.

Myra McClure said in an email to PR member Marty that she has stepped down from the "CFS" SEP! We did it!

Now lets get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so send out this email. OK, OK, I'll let you celebrate and rest for a couple of days, but then come on back and do this two-minute advocacy. Again: Yea Us!.


How to do this extra-easy advocacy:

1. Copy the following subject line and paste it into the subject field in your email.

Subject Line:

2. Copy the following text (the letter) into your main field of your email:

email text:

3. Sign the letter at the bottom.

4. Send the letter to the following addresses:

kathleen.sebelius@hhs.gov

howard.koh@hhs.gov

Wanda.Jones@hhs.gov

francis.collins@nih.gov

james.anderson@nih.gov

vivian.pinn@nih.gov

janine.clayton@nih.gov

dennis.mangan@nih.gov

toni.scarpa@nih.gov

hoshawb@csr.nih.gov

AskDrH@ostp.gov (President Obama's Science Advisor, John Holdren)


Extra Credit:

Go to these contact pages for your members of congress and president and send the email to them:

Find your congressperson at writerep.house.gov/writerep/welcome.shtml

Find your senator at senate.gov (search in top right corner)

http://www.whitehouse.gov/contact/


Congratulations and Thank You! You just saved ME patients from future suffering!
  1. justinreilly
    You might want to take David Streeten off of that list. I don't think anyone wants to be digging the poor guy up.

    Thanks for the catch.
  2. Rrrr
    done! thank you for putting this together. -- rrrr
  3. Jerry
    You might want to take David Streeten off of that list. I don't think anyone wants to be digging the poor guy up.
  4. justinreilly
    I think group actions should be adequately discussed first. There is a lot of knowledge, experience, and wisdom that can be used to put together the best possible collective action if it is something that should be done.

    Roy,

    As things stand now, my current opinion is that it probably doesn't hurt to have someone like me put up the letter he sent and make it easy for those who have similar opinions to mine (which isn't everybody obviously) be able to send out a letter easily. I think it could do some good. For example, we have seen McClure step down from the SEP in response to the individual responses like mine before a group document could be put together.

    I think it would be ideal if some vigilant org could respond appropriately and in a timely fashion with statements. This is the job of an org like CAA, but they are not doing it well. If there is a group, eg on mecfsforums.com, that would like to do this I would be very happy and mostly defer to them if i substantially agreed with their approach.

    I do not have any of the long experience in ME lobbying that you do. So, I want to hear more of what you think on this and give it the respect your opinions on lobbying obviously deserve. I know you feel it is important and more effective for everyone to speak with one voice. Can you tell me more about that? Maybe a discussion on a thread on some forum?
  5. HowToEscape?
    Are there physical addresses to send paper mail to the above parties? Paper mail is such an oddity now that it gets attention. I'm in good enough shape now that I can afford the 15 min to load envelopes, print, sign etc. Best to use the energy while I have it!
  6. Roy S
    I think group actions should be adequately discussed first. There is a lot of knowledge, experience, and wisdom that can be used to put together the best possible collective action if it is something that should be done.