A Blog About the Role of Microbial Toxins in Chronic Illness

66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of Their Experts

 

Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well as for the abandoning of the efforts to involve organizations such as the Institute of Medicine (IOM) in any case-definition effort.

The letter can be found here.

https://www.dropbox.com/s/pz18naeqerpy3g2/Signatures.pdf

(Note: If you get a black screen when you go to the link, just press “Download” and you will be able to read the letter.)

The letter is being Cc’d to a number of other government officials (listed at the end of the letter) and to the 50 experts who had written to Sebelius.

Many thanks to all the advocates who signed the letter! This was a Herculean joint effort.

It is our goal over the next week or so to use Twitter to tweet Sebelius and some of the cc’d government officials as many times as possible, from as many people as possible, in order to draw attention to the letter.

Please join in and help out (and get all your friends to help out too!).

Here are Tweets to eight influential government officials copied on the letter to paste and send.  Please repeat often!

@Sebelius #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@SenatorHarkin #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@JerryMoran #MECFS Patient advocates stand united behind 50 MECFS experts & against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@theIOM #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@BarackObama #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@HHS_DrKoh #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@DrFriedenCDC #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@NIHDirector #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

Also, just as the experts updated their letter with more signatures, we will be sending an updated letter with more advocate signatures as well. This initial letter was put together over the course of just a few days, and so many people who have been terrific advocates for the disease were unfortunately and unintentionally  left out. We sincerely apologize for that, but we had to move quickly for maximum impact.

If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.

The format is:

Name (First and Last)

Degree, School

Previous Job (year or age disabled)

Advocacy Work (or just “Patient Advocate”)

Internet Link? Email Address?

Please send your signatures to the following address:

advocates2sebelius@gmail.com

The signatures will be added to the same letter linked above and sent to the same government officials as well as to the 50 experts.

Thanks much for participating in this community effort!

And a special thanks to Mary Dimmock for helping to reach out to some of the advocates for their signatures.

Jeannette Burmeister

Lisa Petrison

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