By Erik Johnson and Lisa Petrison
About two weeks ago, 35 doctors and researchers specializing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) sent a letter to Kathleen Sebelius, US Secretary of Health and Human Services. Those signing the document (listed toward the bottom of this post) included nearly all of those individuals recognized as experts in this disease.
The purpose of the letter was to request that the Canadian Consensus Criteria for ME/CFS be adopted as the official definition for the disease in the US. The letter is here.
Over the past week, it has come to light that these ME/CFS specialists have been inappropriately pressured to withdraw their signatures from this letter. The alternative to the option that these widely regarded experts have proposed is to have a committee of non-experts (hired by the government with taxpayer monies) create a new definition for the disease.
A new petition provides an opportunity to let these experts know that they have the support of those of us who care about this disease and to urge them not to capitulate to pressure. Signing it also will allow Kathleen Sebelius and other government officials know that we support these experts’ position on this issue and that the development of a different definition of the disease will not be looked upon favorably by us.
It’s important to reach as many people as possible. In addition to signing it, please spread the word by discussing it on your Facebook page, your Twitter account, your blog, illness groups you frequent, or anywhere else you can think of. If you are a patient or friend of any of these experts, please write to them personally to say thank you. And please do these things right away, before it’s too late!
For those interested, following is some background information on this topic.
1. Starting in 1984, an epidemic illness meeting the established criteria of Myalgic Encephalomyelitis occurred in the Lake Tahoe area of Nevada and California. Illness sufferers experienced a wide variety of bizarre and severe symptoms, with a large number of physical and laboratory abnormalities being found by respected researchers and clinicians from around the US and Canada. Many additional clusters as well as large numbers of single cases also matching the definition of ME emerged throughout the US at about this same time. (Background information about prior ME research, the US patients and various case definitions is summarized in this document. A news special from Primetime Live about the mishandling of the Tahoe epidemic by the CDC is at the bottom of this post.)
2. The new medical research evidence generated by Lake Tahoe physicians Paul Cheney and Daniel Peterson forced the CDC to officially recognize the disease. In 1987, the Holmes committee was formed with the express goal of writing a description of the Tahoe illness for future study. Instead, this government committee gave the disease a trivializing name (“Chronic Fatigue Syndrome”) and a vague definition. (An overview of the way that the CDC has handled the disease over the years, written by New York Times reporter David Tuller, is at this link.)
3. Following the release of that definition, the media attention that previously had been given to the Tahoe cohort and others with their same illness dissipated. Almost all doctors reached the unfounded conclusion that “CFS” was not a serious disease and likely was primarily caused by psychological issues.
4. In 1994, another government committee wrote a new definition of the disease, loosening the criteria even more to allow people with mild fatigue or depression to be diagnosed with “CFS.” Commonly referred to as the CDC or Fukuda criteria, this is still the official definition used in the US.
5. Over the next dozen years, research by individuals such as William Reeves into the “psychological aspects” of CFS dominated public discussion of the disease. The work of Simon Wessely and other UK psychiatrists suggesting that the disease was caused by “fear of exercise” also became prominent during this time.
6. In 2003, a group of researchers and clinicians with significant ME/CFS experience was commissioned by Health Canada (the Federal department responsible for helping Canadians maintain and improve their health) to develop what have become known as the Canadian Consensus Criteria. This definition presented a much more specific portrait of the illness than previous definitions and was published in a peer-reviewed journal.
7. Starting in about 2007, many serious medical researchers as well as respected members of the media took a new look at “CFS” and concluded that it indeed was a serious physiological disease after all. The FDA stated that it considered CFS and ME to be a “serious disease.” Even the CDC website was changed to refer to the disease as “devastating.” More than 500 peer-reviewed studies on Pub Med now detail a wide variety of medical abnormalities, including ones related to the cardiovascular system, immune system, neurological system and endocrine system.
8. In 2011, a slightly updated and revised version of the Canadian Consensus Criteria (referred to as the ME International Consensus Criteria) was published by a group of 26 individuals experienced with the disease in a peer-reviewed journal.
9. In September 2013, Department of Health and Human Services Secretary Kathleen Sebelius announced that the US government was going to create a new definition for ME/CFS. A contract to pay for the development with government money was signed with the Institute of Medicine (IOM), a non-governmental organization that recently did the same type of project for Gulf War Illness (GWI, a disease with many of the same symptoms as ME/CFS). IOM changed the name of that disease to the non-specific “Chronic Multi-Symptom Illness” and was heavily heavily criticized by many GWI patients as placing most of its emphasis on psychological issues rather than physical ones.
10. On September 23, a group of 35 physicians and researchers specializing in ME/CFS sent a letter to Secretary Sebelius expressing their opinion that the government should cease efforts to reach out to groups like IOM and instead should adopt the Canadian Consensus Criteria (CCC) as the definition for the disease. They suggested that the IOM had insufficient expertise to develop a definition for this complex disease; that the adoption of some other definition than the CCC likely would impede both patient care and research; and that activity to develop a different definition would waste scarce taxpayer funds. Discussion of this letter is here, here and here. Individuals who signed the letter are listed toward the bottom of this post.
11. On September 28, an ME/CFS patient reported in her blog that the CFIDS Association of America (CAA) had contacted at least some of those experts suggesting that they might consider withdrawing their signatures from the letter sent to Secretary Sebelius. The blog writer expressed particular concern because Dr. Suzanne Vernon (a former CDC employee currently working for the CAA) was a beneficiary of the IOM contract. (Note that this is not the first time that the CAA has made controversial decisions — some of the others are discussed in this blog essay published two years ago.)
12. On October 2, this same blogger revealed that one of the experts who had signed the letter to Secretary Sebelius had changed her position to support the IOM contract after discussions with the CAA.
13. Later on October 2, the CAA released a statement with regard to their actions in this situation. Analysis of the CAA’s statement followed. Some patients pointed out that the CAA’s involvement here was particularly surprising since they had previously stated they were solely a research rather than an advocacy organization.
14. On October 3, the CAA paid to have Facebook send out a “Sponsored” post. This post, which presumably was paid for with donated funds, linked to their statement justifying their recent activities of contacting the experts who had signed the letter.
15. Later on October 3, Mary Dimmock launched a petition summarizing the situation and stating the following: “We applaud these experts for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients. Please join us in sending them a note to thank them and show them our support.”
The petition will be sent in a few days to Secretary Sebelius, to other government officials, and to the ME/CFS experts who signed the letter.
We believe that this government initiative to redefine ME/CFS is the most important political event related to this disease that has occurred since 1988, when the Holmes paper establishing “CFS” as an official disease was released. For good or for bad, this is an event that has the potential to create a dramatic impact on patients’ lives.
We thus hope that everyone reading this will support this petition in every way that they can.
Since the government does not yet recognize either “Toxic Mold Illness” or “Chronic Lyme Disease” as legitimate conditions, how it views the similar condition of ME/CFS is particularly important to individuals suffering from them with regard to obtaining disability and other issues. We thus ask those individuals with Lyme or mold issues to support this petition as well.
Thanks for your consideration.
To sign the petition, please click here.
Here are the ME/CFS experts who signed the letter to Secretary Sebelius:
Dharam V. Ablashi, DVN, MS, Dip Bact.
* Lucinda Bateman, MD
David S. Bell, MD, FAAP
Gordon Broderick, PhD
Paul R. Cheney, MD, PhD
John K. S. Chia, MD
Kenny L De Meirleir, MD, PhD
Derek Enlander, MD, MRCS, LRCP
Mary Ann Fletcher, PhD
Ronald Glaser, PhD, FABMR
Maureen Hanson, PhD
Leonard A. Jason, PhD
Nancy Klimas, MD
Gudrun Lange, PhD
A Martin Lerner, MD, MACP
Susan Levine, MD
Alan R. Light, PhD
Kathleen C. Light, PhD
Peter G. Medveczky, MD
Judy A. Mikovits, PhD
Jose G. Montoya, MD, FACP, FIDSA
James M. Oleske, ME, MPH
Martin L. Pall, PhD
Daniel Peterson, MD
Richard Podell, MD, MPH
Ima Rey, MD
Christopher R. Snell, PhD
Connie Sol, MS, PhDc
Staci Stevens, MA
Rosemary A. Underhill, MB BS, MRCOG, FRCSE
Marshall V. Williams, PhD
Birgita Evengard MD, PhD
Sonya Marshall-Gradisnik, PhD
Charles Shepherd, MB, BS
Rosamund Vallings, MNZM, MB, BS
* Individual changed her position after discussions with the CFIDS Association of America.
To sign the petition, please click here.
To go to the Paradigm Change website, please click here.
The Primetime Live video about the CDC’s mishandling of the Tahoe epidemic:
Links on this page are in orange.