Tell Congress and HHS, IOM Set Up to Fail

Tell the Senate and House Committees controlling the Department of Health and Human Services, and HHS officials, the IOM definition effort for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is set up to fail - just like the one they did for Gulf War Illness.

If another poor name and definition are created, it will have devastating consequences for one million Americans, and 17 million worldwide, for another 30 years. This needs to stop now before more money is wasted and more lives are ruined. The already existing Canadian Consensus definition and the name Myalgic Encephalomyelitis are excellent and should be adopted now.

You may edit the letter to personalize it. After you send it, please share it widely on message boards, social media and email.

Note to those outside the U.S., you need to input a U.S. address. If you can't participate in this letter, please sign the Avaaz petition, if you haven't already done so.

Expires May 29, 2014, so act now!

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Showing 8 reactions

Gina Bettor commented 2014-05-17 04:05:56 -0400
I think HHS overlooked the recommendations (as usual) from the Congressional chartered CFSAC. Not only am I against this contract, I am against CFSAC reporting to HHS. CFSAC needs oversight from Congress. That is how it was initially chartered. HHS has kept patients suffering far too long. CFSAC is to be an advisory committee made up of experts and clinicians in the field. Reporting to Congress is necessary as HHS never listens or responds. The CDC toolkit was to be removed via years of requests. Patients need treatments, ie; pain medications to stop the pain. Not antidepressants which can harm. We have a definition. The CCC!
The most important thing is a new name, acquired immune reactivation or AIR or acquired inflammatory response. Even LINKS Low immune natural killer syndrome anything except CFS if you are unable to use ME.
Fern M. commented 2014-04-25 21:21:32 -0400
Excellent letter. Just made a few changes, additions and one important deletion: Kathleen Sebelius. Thanks.
Michelle Curtis commented 2014-04-25 13:14:35 -0400
I’m so glad to see this kind of petition available. Thanks so much for taking the initiative!
Victoria Bell commented 2014-04-24 05:31:40 -0400
Using both my cell and iPad I’m unable to make an edit. Am I missing something? Thank you for any help you can offer. Thank you!
Mary Ann Kindel commented 2014-04-23 16:10:20 -0400
Thanks for the feedback. A link for this has been added to the Take Action page.
Justin Reilly commented 2014-04-23 05:11:43 -0400
Suggestion: can you put a link to this page in your “Take Action” page?
Justin Reilly commented 2014-04-23 02:52:46 -0400
Signed. Thank you for setting this up! This is exactly what we need- streamlining of the advocacy process- to help us reach our goals! Thanks also for spending the time to set up the cc’s to all the players- crucial! I saw this was being ccd to various people, but was it being sent (rather than cc’d) to anyone specifically. IoM?
Mary Ann Kindel published this page in Take Action 2014-04-21 16:36:10 -0400

Tell Congress and HHS, IOM Definition for ME/CFS Set Up to Fail - Final Days!

Showing 8 reactions