Wednesday, February 22, 2012

Update about 'Apologize for not Responding Appropriately to the ME/CFS Epidemic' on Change.org


You have received the following message about "Apologize for not Responding Appropriately to the ME/CFS Epidemic" on Change.org

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Update about 'Apologize for not Responding Appropriately to the ME/CFS Epidemic' on Change.org

The CDC's website no longer refers to any tests as experimental or theoretical!
This means health providers won't be officially discouraged from ordering tests for immune system dysfunction, reactivated infections, and other potential biomarkers. It also means insurance companies cannot rely on the CDC's advice should they attempt to deny reimbursement for such testing.
Deleting information discouraging such testing is one of the requests in the petition you signed, so be proud of helping bring this change about!
CBT and GET are, unfortunately, still prominently featured on the website. But the CDC has communicated that more changes to the site will be made.
NIH continues to be a problem. I've changed the language about doubling research funding to add that this should be done annually until funding reaches parity with that for similarly disabling diseases such as Multiple Sclerosis. Funding is tied to the number of grant applications, but NIH has the means to encourage those and so far hasn't done much. Specifically, we need a Request for Applications that includes the total dollar amount available for grants.
I hope to print out the petition including all comments and all signatures relatively soon. Then (health permitting), I will send a copy to each official targeted by the petition. (Keep in mind that they have all received emails every time it was signed).
The petition has over 600 signatures. Most came within 24 hours and 500 had signed by the time of the November CFSAC meeting, which means Federal officials were well aware that many more than could attend this meeting echoed the concerns of those who testified.
Congratulations and thanks for your participation!
Best wishes,
Liz

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