Thursday, November 3, 2011

Petition Our Keepers: Be Heard From Your Home or Bed!

Do you have something to say to our keepers?  Those who have kept us in virtual chains, in our homes, in our beds?  Without knowledgable doctors and social support?

If the answer is "Yes, but...I don't know what to say, I can't think,  I can't write!" here's an easy solution.

Click to petition senior federal officials in charge of ME and CFS policy and add your name.  Some of them will be at the CFSAC meeting on November 8 and 9.   When you sign, an email will be sent to a half dozen people who have the power to change our lives, from Secretary Sebelius to NIAID Director Fauci.

Imagine being bugged daily with emails!  And all you have to do is sign.  Only your signature is shared with the recipients.  There's even an option to hide your signature and still be counted (but really, don't you want those emails sent with one click?)

The text of the emails is simple and to the point:


I just signed the following petition addressed to: Kathleen Sebelius.

Apologize for not responding appropriately to the ME/CFS epidemic.

Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health, recently made the following statement in response to a published study indicating the cancer drug Rituximab may be an effective treatment for ME/CFS:

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Follow the Norwegian Health Minister's example.

In addition, we ask that you:

1.  Double the current NIH funding for extramural research  annually until it achieves parity with funding for similarly debilitating chronic diseases like Multiple Sclerosis.  Priority should be given to research on biomarkers and potential pathogens as well as clinical trials.

2.  Take down information on the CDC's CFS website stating testing for pathogens and biomarkers is "experimental and theoretical" and that GET and CBT are appropriate treatments.


[Your Name]

Simple, right?

So come on and sign!  And don't forget to share the petition with others who are likely to sign.

Let your voice be heard!