As was the case with the experts’ open letter to Secretary Sebelius—which was 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 No signatures were withdrawn from the original version of the letter.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.
The body of the updated letter from advocates that was sent earlier today can be found at the end of this post. For a complete copy of the letter, including all signatures, please click on the link or attachment 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.
An important 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 and tweet them 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 [link]
@JackKingston Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@rosadelauro Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@RepRoybalAllard Overwhelming, growing # of #MECFS advocates united w/ 50 experts & against $1M #IOMContract waste [link]
@RepBarbaraLee Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@RepMikeHonda Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@SenatorHarkin Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@JerryMoran Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@theIOM Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@HHS_DrKoh Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@DrFriedenCDC Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@NIHDirector Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@NIAIDNews Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@theNCI Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
@BarackObama Overwhelming, growing # of #MECFS advocates united behind 50 experts & against $1M #IOMContract waste [link]
If you wish to write your own tweets, here is the URL to the advocates’ letter: [link]
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.
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 to 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 in this attachment: 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 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.
Many sincere thanks to all of those individuals—experts, advocates and patients—who have participated in this important effort thus far.
Lisa Petrison
Jeannette Burmeister
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://drive.google.com/open?id=0B50f6QRZgC7kUElhYWVzaGpZYlk
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 expertsʼ lead by using the CCC as the sole case definition for ME/CFS in all of the Departmentʼs 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:
(see link above for signatures)
International Signatories:
(see link above for 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
Thoughts About M.E. 
This is such a LOUD IMPORTANT STATEMENT, Lisa and Jeannette–thank you for going the great distance with this for us ALL–names from all over the globe in various professions–speaking up for the truth of this horrid disease!!
Just a further note as to the OBVIOUS NEED to stand up and speak to this most questionable IOM contract for ME/CFS, I recently sent an e-mail to Ms. Kate Meck, Associate Program Officer, Institute of Medicine, USA expressing my concerns as to the composition of the committee–with the OBVIOUS NEED for the VAST MAJORITY to be ME/CFS experts. I received a second response from Ms. Beck now with (further) information as below:
“I have been receiving lots of emails from the patient and advocate communities, so I certainly recognize and understand the shared perspective you offered.
The IOM staff are working to convene a committee that includes ME/CFS experts, as well as those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community.
Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.
Best,
Kate Meck”
Yessss–a very ALARMING MINDSET in that response from IOM = GREAT CONCERN WITH ALARM BELLS RINGING!!
IoM: The Blind Leading the Blind
It would be hilarious if it weren’t so pathetic.
We need to use this quote in spreading the word since it shows the utter illogic and disregard they have for ME science. What other disease could they get away with saying this about?!
“Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.” -IoM
This is an echo of Unger’s objection that the CCC are too complicated for doctors, which was repeated in the introduction to the IoMs Statement of Work. Never mind that it’s accurate, its supposedly “confusing.” But that’s like saying that conducting and interpreting the results of MRIs and Spinal Taps are too complicated for General Practitioners, so we need non-experts to redefine MS so it’s a simple checklist and diagnosis of exclusion for GPs.
Too complicated for doctors? I’m not a doctor, don’t even have a degree, I don’t have ME (I have Fibro), and I could understand it…
Thanks also to Justin Reilly for picking up on this (response from IOM) AND ‘running with it’—it smacks of absurdity AND complete INCOMPETENCE which is being used to bring about a ‘foregone conclusion’ by IOM and those steering the IOM boat—-NOT in favour of moving science rapidly forward for ME/CFS and bringing the millions of us–male and female, all ethnicities, all ages–including children–back to health, productivity and ‘living’ our individual and collective lives.
Importantly, as we stand up and speak up together, we are also speaking up for the generations after us–NONE of us deserves nor wants to be ‘locked into’ this horrid debilitating disease–we WANT our health and our lives back!!!
The intention of IOM and those steering the IOM ship appears to be to lock the antiquated door (their ‘authority’) with their broken rusty key (old INaccurate MISinformation and definition of ME/CFS) and keep us hostage and bound in this horrid disease of ME/CFS in perpetuity (the IOM ‘redefinition’ of ME/CFS).
“Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.”
of course, makes total sense: because clueless clinicians are going to treat us, we need clueless experts to come up with bad criteria, so that the clueless physicians are able to understand them.
totally logical. NOT!
ABSOLUTELY, Jeannette–that response from Ms. Kate Meck says it all — and makes NO good sense WHATSOEVER–except that it fills IOM’s mandate/agenda–which is certainly and most obviously NOT in favour of the advancement of ME/CFS science and getting us back to ‘health’.
Take any other category of a business committee–not necessarily related to health–say, computers, for instance. WHY would any business want to develop a definition or terms of reference for a project using NON-EXPERTS–for computers, for sales for ANYTHING–and ESPECIALLY FOR HEALTH!!!! Ummm–as we KNOW, there is something TERRIBLY WRONG with this picture!!! There is CLEARLY another agenda!!!!!!!
couldn’t agree more!!!
make that “experts” please!
Thank you, thank you, thank you. You ROCK! As a long-time CFS patient, I appreciate and applaud your advocacy and the work you do to keep us informed. It is unbelievable that the CFIDS Association of America has declined to support this effort. Please know that the thought and energy you are putting into this is very much appreciated.
Best regards,
Carrie Patten
thank you, carrie. it’s taken all i (and lisa) have and more. it’s been a huge effort. worth it, but a good reminder for why i am not working anymore. we could use a lot of support with the twitter campaign to make the effort worth it.
You and Lisa have certainly had to push FAR beyond to accomplish this important work, Jeanette; we hope that you can find some much needed rest periods . . . with much heartfelt thanks 🙂
Thank you Ess! It’s been extraordinarily difficult to collect all these signatures. Thank you for your appreciating that!
I don’t really understand twitter. Does this get directly to them? Thanks so much for doing this. I imagine the toll it’s taking on you.
With this ME/CFS-befuddled brain, I’m social-media challenged, and Twitter-challenged. I support all of this effort and thank everyone.
I tweeted them all out. I hope it helps. Thanks for preparing it so I could copy and paste.
awesome, holly! i have them all in a word document, so every day, i open that and copy and paste. literally takes only 2 minutes.
there is power in twitter. let them feel the heat, folks!
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