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Overwhelming, Growing Support of ME Experts by Advocates in Opposition to IOM Contract: Advocates’ Open Letter Re-Sent With Additional Signatures

As was the case with the experts’ open letter to Secretary Sebelius — first published on September 23, 2013, and then updated on October 25, 2013 — the October 28, 2013, advocates’ letter now has been updated with additional signatures and re-sent to Secretary Sebelius and other government officials.

An additional 105 active U.S. and international advocates signed on to support our experts, for a total of 171 active advocates. No signatures were withdrawn from the original version of the letter.

This is an overwhelming show of support by advocates for our experts. With virtually no exceptions, the only prominent advocates who declined to sign the letter were several journalists (who could not participate for professional reasons), the current leaders of the CFIDS Association of America (CAA) and of PANDORA, and a few other individuals with particularly close connections to those two organizations.

Here is a link to the updated advocates’ letter, sent to Sebelius and other officials (including the president of the Institute of Medicine (IOM)) today. 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.

https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated%20Signatures.pdf

The body of the updated letter from advocates that was sent earlier today can be found below. For a complete copy of the letter, including all signatures, please click on the link above.

This updated version of the advocates’ letter contains no revisions to the text of the original advocates’ letter. In addition to the added signatures, it includes some additional recipients (including members of the Congressional subcommittee that oversees financial spending by the Department of Health and Human Services; the DHHS Inspector General; and the Inspector General in the U.S. Government Accountability Office).

To maximize the impact of this unprecedented coming together of advocates worldwide, please help spread the word by sharing the letter on Facebook, on your blog, in emails and, most importantly, on your Twitter feed. 

A critical goal at this point is to draw government officials’ attention to the letters sent by the experts and the advocates, and in general to let these people know that our community is very involved in this issue.

Unfortunately, this disease makes it difficult to arrange a March on Washington to demonstrate our concern. However, since many influential officials (including Secretary Sebelius) maintain an active presence on Twitter, the next step in this effort is to use that forum to make sure that they know that many people care about this issue.

Please copy and paste the following tweets on Twitter today —  and then again every day until this situation is resolved to our satisfaction!

@Sebelius Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@JackKingston Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@rosadelauro Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepRoybalAllard Overwhelming, growing # of #MECFS advocates united w/ 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepBarbaraLee Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@RepMikeHonda Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@OIGatHHS Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@usgao Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@SenatorHarkin Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@JerryMoran Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@theIOM Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@HHS_DrKoh Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@DrFriedenCDC Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@NIHDirector Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@NIAIDNews Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@theNCI Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

@BarackObama Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste tinyurl.com/k4cqftq

 

If you wish to write your own tweets, here is the URL to the advocates’ letter: tinyurl.com/k4cqftq

Obviously, people with severe cognitive difficulties may have a hard time helping out with this. For most people though, it shouldn’t take more than a few minutes a day to post these tweets.

Please consider not just participating yourself, but asking others to help out as well. If the tweets come from many different people, it will demonstrate that there is widespread interest in this issue.

An extraordinary amount of effort went into these letters and so it’s important to make sure they get the attention of the relevant government officials and the media.

Thank you for your participation in helping to make our community’s Twitter campaign a success!

 

A few more notes about the letter from advocates sent out today:

In order to facilitate a broad consensus, the advocates’ letter mirrors the experts’ letter almost word for word. There were basically no substantive changes from the experts’ letter, just changes to reflect the fact that our letter is coming from advocates rather than clinicians and researchers. A redline version showing the minor, non-substantive changes can be found here:

Redline_Sebelius_Letter_Advocates_Updated

The goal of the advocates’ letter was to demonstrate that advocates stand united behind our experts in their adoption of the Canadian Consensus Criteria (CCC) and in their opposition to the IOM involvement. The experts clearly and thankfully realized that this is a crucial juncture for this disease, one from which we may not recover if we don’t fight. If the experts were able to put their disagreements on certain other points aside and come together for this one pivotal issue, then surely, we figured, we can and must do the same for ourselves. And we indeed are doing that!

Please do note that this project has been somewhat overwhelming. If we overlooked an email with your signature in our inboxes, please let us know and we will add it to the letter if your email was sent before we finalized the letter yesterday. Also if we accidentally made a mistake in reproducing your signature, we apologize and are happy to correct that. Undertakings like this and the cognitive dysfunction of this illness don’t mix well.

More background on this very important topic can be found in prior posts on this blog. A link to some additional information will be posted here later today.

The experts’ letter to Sebelius is at this link.

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf

Many sincere thanks to all of those individuals — experts, advocates and patients — who have participated in this important effort thus far.

Jeannette Burmeister

Lisa Petrison

*

HERE IS THE TEXT OF THE ADVOCATES’ LETTER AND THE LIST OF RECIPIENTS:

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

 Original Letter – October 28, 2013

Update with additional signatures – November 9, 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.

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf

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 experts’ 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,
(Advocate Signatures)

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

Jack Kingston, Chairman, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Rosa DeLauro, Ranking Member, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Lucille Roybal-Allard, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Barbara Lee, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Mike Honda, California, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Danile R. Levinson, Inspector General, U.S. Department of Health and Human Services

Adam Trzeciak, Inspector General, U.S. Government Accountability Office

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

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