NIH have gotten Myra McClure, Dentists and Psychs to go to Work on You!

Blog entry posted by justinreilly, Feb 3, 2011.

UPDATE: Myra McClure Stepped Down from the "CFS" SEP! We did it!
We still need to get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so please refer to my latest blog post for an easy letter you can send on that score. Again: Yea Us!.

New Post:
http://forums.aboutmecfs.org/entry....Us!-Now-lets-get-some-actual-scientists-on-it!

________________________________________

This is my first blog post ever. So exciting!

As Cort reported, the new composition of the NIH's "CFS" panel is top-heavy with psychologists, dentists and Myra McClures. That's right, NIH has been taking some no-cost steps to appease us, but where the rubber hits the road- the grant making process, it is showing it's true colors once again. This is just NIH's latest move in it's historical war on ME science. More info at CFScentral.com.

I wrote the following letter which I encourage you to cut and paste and send to the following people. I used most of Patricia Carter's letter then added my own objections to McClure's saying things in the press which were unsupported by the science and also a complaint on the over-all make up of the SEP (text authored by Dr. Yes).

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

francis.collins@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. dominique
    I know Senator Reid is very involved with Annette Whitmore.
  2. justinreilly
    According to Jspotila, a senator in the 50s who had a relative with MS was the one who got things changed and moving for MS at HHS. Does anyone know of any politicians or politically connected people who have a relative with ME?
  3. WillowJ
    I don't think we're going to see a president or senator resign over ME anytime soon. But, it is true that, if the sordid history of ME is any guide, CDC and NIH will not change until directed to do so by congress, so we can't just send our emails to a couple of people at NIH or CDC. We've been doing this for 25 years. time to send everyone letters esp. congress. If someone has the emails of the membership of the house and senate committees that oversee NIH and CDC, please let me know. Otherwise, I'll look them up eventually. I will go check mcwpa.

    It took a Congressional directive to get MS changed over from "hysterical paralysis," too.

    You cannot generally email someone who is not your own Senator. :( They changed it so it's a web fill-in form and you have to enter a ZIP code in the Senator or Rep's election district.

    You can still reach them by fax, by post, or by phone. I assume a staff member reads your mail, but they will not write you back. (If you send a little money to their election campaign, they will send you donation requests and maybe even Christmas cards, but they still won't answer your letters.)
  4. justinreilly
    LOL! I like your new avatar - can't believe I didn't think of that myself!

    I am compiling my own letter for McClueless, as being a Brit I can hardly complain to your NIH about employing a Brit.

    And may I just add, this really is the best blog ever conceived.


    Thank you for your kind words. What can I say, some people are just born creative geniuses! ;);)
  5. cigana
    OMG! This is the best blog ever! You go, Justin!

    LOL! I like your new avatar - can't believe I didn't think of that myself!

    I am compiling my own letter for McClueless, as being a Brit I can hardly complain to your NIH about employing a Brit.

    And may I just add, this really is the best blog ever conceived.
  6. justinreilly
    SQUEAKY WHEEL GETS THE GREASE!

    yeah now that the focus is off them, ie the XMRV media interest has gone away, the rats are coming back out of the woodwork, which is no surprise really, way it always is :/

    right, we've got to keep the spotlight on them.
  7. SilverbladeTE
    SQUEAKY WHEEL GETS THE GREASE!

    yeah now that the focus is off them, ie the XMRV media interest has gone away, the rats are coming back out of the woodwork, which is no surprise really, way it always is :/
  8. Nico
    Just as a foot-note to my comment: I posted it whilst feeling tired and very cranky. Probably the best thing to do is hope for the best, and keep hoping for the best. Thanks Justin, for your efforts.
  9. justinreilly
    This whole thing has just took the wind out of my sail. I was trolling along and actually thought things would be different from now on, but it is the same old corrupt bureaucracy. It just moved from the CDC to the NIH and they will keep kicking the leg out from under CFS research.

    There should not be any foreign people serving on this panel. They are intentionally trying to squash the CFS patient and it will not change

    I hope I'm wrong and I'll support this effort 100% as this is great stuff Justin, so please keep it up!!!

    NIH has been just, or almost, as bad as CDC this whole time. Stephen Straus at NIH was probably worse than Reeves imo. These changes NIH has made in the last few months are good, but they're reverting to form now with this nonsense. It is very dispiriting, but we are better organized and can have more of an effect by raising our voices. So thanks for sending these out (if you have) and let others know this just takes a couple of minutes.
  10. justinreilly
    Thanks for posting this. I don't think "heavy hitters" are going to do anything until someone as "big" as a Senator, VP or Prez. has to resign due to CFS. Then we'll see progress. Sorry, I'm feeling a bit bitter about the lack of interest and specialists in this field. And, the cost and travel expense required to see a CFS specialist.

    I don't think we're going to see a president or senator resign over ME anytime soon. But, it is true that, if the sordid history of ME is any guide, CDC and NIH will not change until directed to do so by congress, so we can't just send our emails to a couple of people at NIH or CDC. We've been doing this for 25 years. time to send everyone letters esp. congress. If someone has the emails of the membership of the house and senate committees that oversee NIH and CDC, please let me know. Otherwise, I'll look them up eventually. I will go check mcwpa.