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 complete letter can be found here.

The body of the letter (without the signatures) is reproduced at the end of this post. Please note that this letter was modeled after the open expert letter to Secretary Sebelius of September 23, 2013, updated on October 25, 2013. It mirrors it almost word for word. Changes only were made to reflect the fact that this letter is coming from advocates and  not clinicians and researchers.

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. [link]

@SenatorHarkin #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. [link]

@JerryMoran #MECFS Patient advocates stand united behind 50 MECFS experts & against waste of $1mill on #IOMContract. [link]

@theIOM #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. [link]

@BarackObama #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. [link]

@HHS_DrKoh #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. [link]

@DrFriedenCDC #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. [link]

@NIHDirector #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. [link]

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 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.

Lisa Petrison

Jeannette Burmeister

An Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius,
U.S. Secretary of Health and Human Services

October 28, 2013

Dear Secretary Sebelius,

We are writing as patient forum leaders, not-for-profit organization managers, scholars, authors, filmmakers, bloggers and other advocates working on behalf of individuals with the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to inform you that we stand united in support of the positions expressed in the letter to you dated September 23, 2013; updated October 25, 2013; and currently signed by 50 biomedical researchers and clinicians with expertise in ME/CFS.

As you know, the 1994 International Case Definition (Fukuda et al, 1994), commonly known as the Fukuda definition, was the primary case definition for ME/CFS for almost two decades.

However, as our experts wrote to you, in recent years expert researchers and clinicians have increasingly used the Canadian Consensus Criteria (CCC), as they have recognized that the CCC is a more scientifically accurate description of the disease. Unlike the Fukuda definition, the more up-to-date CCC incorporates the extensive scientific knowledge gained from decades of research, our experts explained.

As described in the letter from our experts, there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and failure to do so will significantly impede research and harm patient care. This step will facilitate efforts to define the biomarkers, which will be used to further refine the case definition in the future, our experts agreed.

We strongly urge the Department of Health and Human Services (HHS) to follow our experts’ lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.

In addition, we strongly urge you to abandon reliance on groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. In addition, as our experts wrote, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.

ME/CFS patients who have been disabled for decades by this devastating disease need to see the field move forward and there is no time to waste. We believe that our expertsʼ consensus decision on a case definition for the disease will jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients. We look forward to this accelerated progress and urge you to work with the people who know the most about this disease — our experts — in order to effectively increase scientific understanding of the pathophysiology of this disease, educate medical professionals, develop more effective treatments, and eventually find a cure.

Sincerely,

United States Signatories

…

International Signatories

…

Cc:

Barack Obama, President of the United States of America

Senator Tom Harkin, Chairman, Senate Appropriations Subcommittee on Labor, Health

and Human Services, Education, and Related Agencies

Senator Jerry Moran, Ranking Member, Senate Appropriations Subcommittee on Labor,

Health and Human Services, Education, and Related Agencies

Dr. Harvey Fineberg, President, Institute of Medicine

Dr. Howard Koh, Assistant Secretary for Health, Department of Health and Human

Services

Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health, Department of Health

and Human Services

Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality

Dr. Thomas Frieden,Director, Centers for Disease Control and Prevention

Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services

Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration

Dr. Mary Wakefield, Administrator, Health Resources and Services Administration

Dr. Francis Collins, Director, National Institutes of Health

Dr. Harold Varmus, Director of the National Cancer Institute

Dr. Anthony Fauci , Director of the National Institute for Allergy and Infectious Diseases

Ms. Carolyn W. Colvin, Commissioner, Social Security Administration

The 50 Expert Signatories of the Open Letter to Secretary Sebelius, Dated September 23, 2013, and Updated October 25, 2013