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Despite Overwhelming Opposition, HHS Going Ahead With Plans to Redefine ME/CFS

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September 17 ME Advocacy Action: Urgent

By Mary Dimmock

Tell HHS to Stop the New IOM Contract. Tell HHS Not to Redefine ME/CFS!

Despite the strong outpouring of patient opposition to HHS’ August 27 announcement to contract the Institute of Medicine (IOM) to “develop clinical diagnostic criteria for ME/CFS,” HHS announced, on September 12, that it is going forward with its contract with IOM to redefine ME/CFS. HHS plans on signing the contract with IOM before September 30 and has said it will share information with the ME/CFS community only after the contract is finalized and signed

Adding insult to injury, HHS has announced that the fall CFSAC, long a face-to-face meeting, will not be in person but instead will be held by webinar. We are being told that HHS cannot afford a face-to-face CFSAC meeting, yet it can waste millions of dollars undoing the science that our experts have already established. 

HHS is speaking loudly and clearly. HHS does not want to hear what we have to say about our disease. HHS has every intention of pursuing its plans to redefine ME/CFS, unilaterally and in secret. HHS dismisses the definitions of our experts and even questions the hallmark symptom of our disease – Post-Exertional Malaise. HHS has repeatedly stated that it wants to use people who have no experience with our disease to develop the criteria for it. Given the firestorm of criticism the IOM received after devising a vague, and ultimately meaningless, definition of Gulf War Illness, chances are very good the  IOM will define ME/CFS out of existence.

The IOM contract is not only a waste of precious time and money. It is a threat to our very lives! 

HHS needs to adopt a definition our experts have already created and use that definition to reeducate the medical community. It needs to drive an aggressive and fully funded research campaign to validate biomarkers, understand the pathophysiology of the disease and identify treatment approaches. 

Tell HHS to not sign the IOM contract. Tell HHS to stop trying to redefine our disease and start using what our experts have already created! 

You can read additional background here

Immediate Actions You Can Take to Stop the Latest IOM Contract

Send an email to Secretary Sebelius every day to voice your opposition to this contract. Directions and a sample letter are below. 

Distribute this action alert to your networks and your family and friends, and urge them to send an email.

We can and must stop HHS from redefining our disease. 

If you have questions, please contact 

Instructions for Emailing HHS:

If you are using the sample email provided below, copy the sample email into the body of an email message. If you wish to personalize it, add a sentence or two at the beginning of the letter. 

Add your name, city and state (or country if you do not reside in the US) to the end of the letter. 

Add the Subject Line “Stop the IOM Contract to Redefine ME".  Feel free to change the subject line from time to time to avoid spam filters. Another tip: If you have more than one email account, use one on one day and the other on another.

Copy the following addresses into the ‘TO” and “CC” boxes



The CC includes addresses for the heads of all HHS agencies. The email address is used to track the number of messages sent.

Sample Email for HHS – To be copied into the body of an email message.

Dear Secretary Sebelius,

I strongly urge HHS to abandon its plan to employ the Institute of Medicine (IOM) to define its own clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

Researchers and clinicians with years of experience in studying and treating this disease have already created peer-reviewed case definitions – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. These definitions are supported by clinical guidelines for medical practitioners, guidelines also created by experts. These definitions are well regarded by patients, ME/CFS doctors, and ME/CFS researchers. The CCC has been successfully used both clinically and in research for years. 

But rather than adopt these expertly defined disease criteria and their associated medical guidelines, HHS has promoted its own overly broad and inaccurate view of ME/CFS. HHS has questioned the hallmark symptoms of ME/CFS (e.g. Post-Exertional Malaise) and misrepresented the disease in its medical education literature. HHS has even unilaterally reclassified ME/CFS to be a subtype of chronic fatigue, in complete opposition to the standards set by the World Health Organization and all other countries that classify this illness as a neurological disease. 

Now, HHS is intent on creating new criteria for ME/CFS using the IOM, an organization whose single effort to define a disease has been harshly criticized for redefining the disease too broadly and for using non-experts to define the disease. Repeating the error made in defining Gulf War Illness, HHS has stated its intent to use non-experts to define ME/CFS. This is a very serious concern for patients who face widespread disregard from the general medical and research community. Adding to these concerns, the description of ME/CFS in the January 2013 IOM report failed to accurately represent the illness, listing CBT and GET as treatments, treatments that experts have said can be harmful to ME/CFS patients.

HHS is going ahead with the IOM contract unilaterally, ignoring overwhelming opposition from the ME/CFS community. HHS is undermining the work of our experts while patients are suffering and dying. HHS must stop wasting precious time and dollars. HHS must stop wasting our precious lives.

I strongly urge HHS to abandon its plans to employ the IOM to define clinical diagnostic criteria for ME/CFS. It is time for HHS to adopt the Canadian or International Consensus Criteria and use that definition to drive an aggressive campaign of fully funded research and to reeducate the medical community.


(Your name)

(Your city and state – or country)

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2 thoughts on “Despite Overwhelming Opposition, HHS Going Ahead With Plans to Redefine ME/CFS”

  1. clgrnc says:

    Mon, Sep 23, 2013 6:00 pm

    We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month. This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them. The NIH is convening an Evidence-based Methodology Workshop process that will consider case definitions appropriate for ME/CFS research and the IOM will address the clinical diagnostic portion of the recommendation.

    The Office on Women’s Health/HHS is co-sponsoring the IOM study with several agencies that participate in CFSAC. A group of voting and non-voting members of the committee participated in the development of the Statement of Work.

    The IOM has agreed to perform the following tasks over the next 18 months:

    · Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients;

    · Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;

    · Recommend whether new terminology for ME/CFS should be adopted;

    · Develop an outreach strategy to disseminate the definition nationwide to health professionals.

    To accomplish these tasks, the IOM has also agreed that:

    · the IOM committee will include approximately 15 members with expertise in the following areas: epidemiology; clinical medicine/primary care and other health care fields, particularly with expertise in ME/CFS, including neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology; and scientists and physicians with experience in developing clinical case definitions. The IOM will ask interested parties, including expert clinicians, researchers and patient advocates, to make suggestions for nominees to the committee.

    · the IOM, in addition to the committee meetings, will sponsor open meetings to enlist the comments and concerns of patients, family members and other caretakers, health educators, health care professionals, and advocacy groups. During these meetings, an open phone line and email address will be available to those who cannot attend in person.

    · as the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003 ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC multi-site clinical study of CFS. In an effort to minimize overlap and maximize synergy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS.

    · the committee will distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

    HHS is proud to be making this investment in ME/CFS. We have heard the advocates’ concerns and trust that many have been addressed by the information provided in this email. It is our hope that a widely accepted clinical definition and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic translational research for ME/CFS.


    The CFSAC Support Team

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