The First ‘Death Contract’
Some advocates pointed to the IOM contract to produce a definition for Gulf War Illness IOM as what not to do in ME/CFS. With no Gulf War Illness experts sitting on the panel, and with an unsatisfactory previous IOM Gulf War Illness report, fears were high that the disorder would be misnamed and mischaracterized. A psychological interpretation was considered likely.
Gulf War Illness is, after all, every bit as controversial as Chronic Fatigue Syndrome and has received less study, and had a potential albatross hanging around it’s neck; a vague CFS-like name “Chronic Multisymptom Illness” that had been used to describe GWI it for over a decade.
With no GWI experts sitting on the panel surely GWI patients were due for a major fall.
That didn’t happen. While the IOM GWI definition report didn’t please everyone, it didn’t fulfill their worst expectations either.
The Committee essentially felt GWI was too poorly studied (no clinically validated tests), too variable (GWI patients with markedly different symptoms), and really too difficult to understand given the time lag between exposure (over twenty years ago) and the present, given the limited research, for it to be able to produce new definitions.
The panel stated they lacked data on several aspects of definition creation (duration, onset, severity, laboratory findings) and noted that the studies proposing new definitions lacked many of the elements needed to produce one.
They proposed that two widely used case definitions continue to be used until the data for a new definition is generated. The committee also recommended that the current name, Gulf War Illness, continue to be used to describe the illness.
James Binns slammed the report calling it a ‘slanted report’ which protrayed “a slanted view of Gulf War research totally inconsistent with the science of the past decade”. Binn’s critique appeared, at least in part, to stem from his upset with the scope of a report which was focused on creating a definition, not at determining the cause of the illness.
Gulf War Illness – A Unique Disorder
Symptomatically, GWI may appear very similar to ME/CFS, but in some ways it is very different.
ME/CFS has received much more study (Pub citations – GWS – 1764, CFS – 6200), was not triggered by an event distant in time, but is being triggered (unfortunately) all the time which makes it much easier to study, and has a much, much stronger advocacy community. (The main critic of the IOM GWI report, James Gunn, does not have a website. The first mention of the IOM GWI definition report by an ‘advocacy’ group found during a Google search was on the Phoenix Rising website. Ironically, the ME/CFS community appears to be tracking this issue more closely than the GWI community.)
In contrast to the Gulf War Panel, the IOM panel for ME/CFS has a solid core of Chronic Fatigue Syndrome experts.
With the IOM’s GWI panel rejecting a term (Chronic Multisymptom Illness) that’s been in use in GWS for over a decade, the possibility of a ME/CFS expert rich panel agreeing to a similar term for ME/CFS is unimaginable. The GWI’s panel conservative approach to definition-making suggests ME/CFS advocates have little to fear about the IOM’s ‘Death Contract’ turning radically sour.
The biggest question, perhaps, is whether the ME/CFS IOM panel will come up with a clinical definition at all. My guess, is that they will be able to given the several consensus definitions present, the more studies available, the presence of ME/CFS physicians on the panel, and the results of the CDC’s multi-site ME/CFS experts study. We shall see!
Suzanne Vernon of the CFIDS Association of America was a member of the IOM panel. Below is the CAA’s report on the definition. (Thanks to the CAA for allowing their original review to be published on Health Rising.)
From the CFIDS Association of America – A Tale of Two IOM Committees
Today the Institute of Medicine (IOM) published the report titled, “Chronic Multisymptom Illness in Gulf War Veterans: Case Definitions Reexamined”.
Given that the IOM has been engaged in a project regarding ME/CFS, we felt it would be useful to compare the two studies.
The committee that authored this report titled, “Chronic Multisymptom Illness in Gulf War Veterans” was formed in early 2013 and concluded their work in December of that same year. The Veterans Administration charge to this IOM committee was to “comprehensively review, evaluate, and summarize the available scientific and medical literature regarding symptoms for CMI among the 1991 Gulf War Veterans” in order to:
- Develop a research case definition and if possible, a clinical case definition for CMI (chronic multisymptom illness) as it pertains to the 1990-91 Gulf War veteran population and;
- Evaluate the terminology currently used in referring to CMI in Gulf War veterans and recommend appropriate usage.
Dr. Suzanne D. Vernon, the Association’s Scientific Director, was nominated and volunteered her time to serve on this committee along with Dr. Fred Friedberg, Stony Brook University and President of the IACFSME and 14 of their well-respected peers. See the full committee roster and bio sketches HERE.
This committee reviewed, evaluated and summarized the scientific and medical literature regarding the symptoms experienced by veterans involved in Operation Desert Shield and Operation Desert Storm from 1990-1991. Of the 2,033 unique publications the committee selected 718 for review and evaluation. The topics of these papers included mortality, hospitalization, neurologic symptoms, respiratory symptoms, gastrointestinal symptoms, pain, birth defects and fertility, cancer, mental health conditions and overlapping syndromes.
After rigorous evaluation and extensive deliberation, the committee made the following recommendations.
1) That the Department of Veteran Affairs consider the use of two existing definitions known as the Centers for Disease Control and Prevention (CDC) definition and the Kansas definition because these capture the most commonly reported symptoms.
- It is noteworthy that the committee did not develop a new research or clinical case definition. This is because many of the elements necessary to derive a case definition including onset, duration, severity and objective laboratory findings were lacking in the published literature. Further, the committee did not recommend one definition over the other because both captured the array of the most common symptoms experienced by Gulf War veterans.
2) That the Department of Veteran Affairs assess existing data that could be useful in describing symptom onset, duration, severity, frequency and exclusionary criteria to help with the development of more robust case definition criteria.
- This is important because of the gaps in the existing published evidence. It is challenging to develop a case definition if the necessary information to define a disease is not examined, is not available or does not exist. Therefore, review of existing data in ways that could possibly clarify case definition features like duration and symptom severity will help improve future iterations of both the CDC and Kansas definitions.
3) That the Department of Veteran Affairs use Gulf War Illness rather than chronic multisymptom illness to capture the population involved in the 1990-1991 conflict.
- Diseases may be named after specific events or geographic locations such as Legionnaires disease or the Spanish flu. The committee acknowledged the unique circumstances of the 1990-1991 Gulf War and the fact that Gulf War Illness has been used extensively in the medical and scientific literature.
In September 2013, the Department of Health and Human Services and the Social Security Administration contracted with the IOM to form a committee to evaluate ME/CFS diagnostic criteria. This has been the center of much debate among the ME/CFS population.
The specific charges to the ME/CFS committee are:
- 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
While there are similarities in the charges to these two committees, there are differences as well.
- The IOM conducts studies by reviewing the published, existing evidence.
- In the case of the CMI committee, they only reviewed published evidence.
- The ME/CFS committee has asked stakeholders to provide data, some that may be yet unpublished. This is important as it may provide important new evidence for clinical diagnostic criteria.
- With the CMI committee there was insufficient evidence to justify the development of a new case definition for Gulf War Illness. Since the ME/CFS committee has access to new existing data and strong case definitions already exist, they may be in a better position regarding evidence-based diagnostic criteria.
- Both committees were charged with recommending new terminology.
- The CMI committee recommended use of the name Gulf War Illness for the reasons stated above.
- In the case of ME/CFS, their terminology recommendation remains to be seen.
- The CMI committee was not charged with developing an outreach strategy.
- However, the CMI committee recommendations were to the Department of Veterans Affairs; the agency decides how the CDC and Kansas definitions should be used in the research they conduct and fund. Consistent use and reporting of research using these case definitions will help build a robust evidence base to accelerate the discovery of objective biomarkers and treatments for veterans with Gulf War Illness.
- The ME/CFS committee is charged with developing an outreach strategy to get the information to health professional nationwide – hoping to meet a deep need in the community for more informed care.
In many of the arguments against the IOM Committee for ME/CFS, detractors have noted failing on the part of the IOM committee responsible for the report “Treatment of Chronic Multisymptom Illness”, this report is not the the one published today (March 12, 2014). The treatment report was based on review of the literature of veterans’ health involved from the 1990-1991 Desert Shield and Storm conflicts to active duty service members currently in the Gulf Region and the evidence for treatment of the chronic illnesses and the many varied medically unexplained symptoms they experience. Perhaps the greatest failing is the dearth of published evidence in the biomedical literature for treating serious diseases like Gulf War Illness.
Currently there is a lack of a widely accepted and recognized disease-defining concepts for the core signs, symptoms and decreasing functionality for ME/CFS. The Canadian Clinical Criteria has merit and at same time has not been widely distributed and uniformly accepted. The development of safe and effective treatments for ME/CFS require uniformly accepted criteria that can be used consistently by researchers, clinicians and patients. One of the reasons for the slow progress has been the lack of reliable clinical diagnostic criteria for ME/CFS, so the work now underway with the IOM ME/CFS committee could be a critical step forward for progress.
The New York Times calls the IOM the United States’ “most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world.” Its mission is to serve as adviser to the nation to improve health. The Institute aims to provide unbiased, evidence-based, and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society, and the public at large.
The CFIDS Association continues to be cautiously optimistic about the IOM and the committee’s ability to have the impact necessary to make the disease-defining concepts of ME/CFS widely understood and available. The credibility and authority of something like the IOM – the health arm of the National Academy of Sciences – is critical to making ME/CFS widely recognized and diagnosed by the nation’s medical community. Something we all hope to see in the very near future.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone