We need all the help we can get right now! HHS is bound and determined to sign the IOM contract by September 30th. Advocates are working like mad to stop it. So in addition to sending my own emails to HHS today, I am also emailing my healthy friends and family to ask for their help.
Here’s the email template I am asking my healthies to use. Feel free to adapt to your own needs. Make sure that you add the right information to the first paragraph and signature line. BUT PLEASE reach out to your family, friends, colleagues, and neighbors! Ask them to send an email to support you!
TO: Kathleen.Sebelius@hhs.gov
CC: howard.koh@hhs.gov, txf2@cdc.gov, Tomfrieden@cdc.gov, Marilyn.Tavenner@cms.hhs.gov, margaret.hamburg@fda.hhs.gov, Mary.Wakefield@hrsa.hhs.gov, collinsf@mail.nih.gov, richard.kronick@hhs.gov, cfsac@hhs.gov, MEACTNOW@yahoo.com
Subject: Help My Friend With ME/CFS
Secretary Sebelius,
ME/CFS is a devastating illness that has left my friend <insert name> disabled for nineteen years. There are no treatments approved for her disease. She is homebound, and has lost her career and plans for a family.
I learned this week that your Department is unilaterally pursuing a contract with the Institute of Medicine to redefine ME/CFS, despite the objections of people like my friend and without informing members of your federal advisory committee for the disease.
I do not understand why you would do this. I do not understand why you would ask the Institute of Medicine to create clinical criteria for ME/CFS when the IOM has never done this for another disease. There are many doctors and researchers who are experts on ME/CFS, and it seems to me that you should be asking them to define this disease.
My friend needs your help. ME/CFS should be defined by experts familiar with this complex disease. I ask that you stop this IOM contract. Mistakes are being made, and it will only get worse if non-experts are given power to pronounce judgment on ME/CFS. Please stop this IOM contract. Please act to protect and help people with ME/CFS, and those of us who care about them.
Sincerely,
<sign your name>
Secretary Sebelius,
ME/CFS is a devastating illness that has left my friend disabled for nineteen years. There are no treatments approved for her disease. She is homebound, and has lost her career and plans for a family.
I learned this week that your Department is unilaterally pursuing a contract with the Institute of Medicine to redefine ME/CFS, despite the objections of people like my friend and without informing members of your federal advisory committee for the disease.
I do not understand why you would do this. I do not understand why you would ask the Institute of Medicine to create clinical criteria for ME/CFS when the IOM has never done this for another disease. There are many doctors and researchers who are experts on ME/CFS, and it seems to me that you should be asking them to define this disease.
My friend needs your help. ME/CFS should be defined by experts familiar with this complex disease. I ask that you stop this IOM contract. Mistakes are being made, and it will only get worse if non-experts are given power to pronounce judgment on ME/CFS. Please stop this IOM contract. Please act to protect and help people with ME/CFS, and those of us who care about them.
Sincerely,
Really good letter, Jenny. Thanks again for all that you do on behalf of the ‘collective us.’