Saturday, September 7, 2013

Don't Stop Now!

Thank you!! All of the emails that you have sent the HHS had an effect. It seems as if the HHS has withdrawn its contract with the OIM. Public pressure really does work. But, don't stop sending email to the HHS. It's very important that they continue to hear from us. It's also important that we let them know that "reinventing the wheel" is not the most constructive means of updating the current CDC case definition. 

We all agree that the "Fukuda" definition is vague and confusing. (Not to mention the name, "chronic fatigue syndrome," which is not only vague, but horrendously misleading.) That is why the most respected ME experts in the world convened to establish the Canadian Consensus Criteria (CCC) for ME/CFS. The CCC has been used successfully for over a decade in ME research and clinical practice.
Tell the HHS to stop spinning its wheels and talk to the experts! Keep sending emails to Secretary Sibelius. And, if you have't already, sign the Change the Name petition!

From Jennie Spotila, Occupy CFS, Sept 4,2013
"Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue this request."
I have reached out to multiple sources to confirm whether the contract has been cancelled (or simply suspended), and to determine what happens next. I will keep you posted.
BUT it is very very important that we continue our email action! We need and want a strong, accurate clinical case definition for ME/CFS! This is essential for any of our other efforts to be successful. So tell HHS that we need an case definition process that is inclusive of the ME/CFS experts and stakeholders to solve this problem once and for all.
Please stay tuned for updates as we work with sources and experts to refine our message and find out what HHS plans to do next. I will share updates with you in real time. Keep emailing HHS. YOUR VOICES ARE BEING HEARD. Don’t stop now!!!!

1 comment:

  1. I agree -- it is essential that we keep sending daily emails! A revised sample letter that reflects HHS' contract withdrawal and continues to address the definition issue can be found here. Please feel free to use it or change it as you see fit.

    ReplyDelete

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