Institute of Medicine report

Front cover of the report

The Institute of Medicine report on ME/CFS, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, was published on February 10 2015 by the National Academy of Medicine (known as the Institute of Medicine or IOM until June 2015), an American non-profit, non-governmental organization.

On 23 September 2013 the U.S. Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration announced their intention to ask the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS.

Key findings

• "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
• ME "is a medical-not a psychiatric or psychological — illness"
• "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."
• "Many people with ME/CFS report difficulty completing everyday tasks, and at least one quarter have been home- or bed-bound at some point as a result of their illness."
• "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."
• "ME/CFS can severely impair patients’ ability to conduct their normal lives."

Recommendations

Recommendation 1: "Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”"

Recommendation 2: "The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology)."

Recommendation 3: "A multidisciplinary group should reexamine the diagnostic criteria set forth in this report when firm evidence supports modification to improve the identification or care of affected individuals. Such a group should consider, in no more than 5 years, whether modification of the criteria is necessary. Funding for this update effort should be provided by nonconflicted sources, such as the Agency for Healthcare Research and Quality through its Evidence-based Practice Centers process, and foundations."

Recommendation 4: "The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report."

Cost

The U.S. Department of Health and Human Services contracted to paid one million (US) dollars for this IOM contract. The monies were allocated from the Fiscal Year 2013 budget.

Read the report

• Key facts (two pages)
• Report brief (four pages)
• Download full report (282 pages)
• Diagnostic Algorithm Chart
• Proposed Diagnostic Criteria Chart
• Read the full 282 page report online
  • Front matter
  • Summary
  • 1. Introduction
  • 2. Background
  • 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
  • 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations
  • 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations
  • 6. Pediatric ME/CFS
  • 7. Recommendations
  • 8. Dissemination Strategy
  • Public Session Agendas
  • GRADE Grid Template
  • Disability in ME/CFS
  • Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms
  • Biographical Sketches of Committee Members, Consultants, and Staff

Criticisms

Peter White, a British psychiatrist and co-author of the PACE trial, criticised the report.

Per Fink, a Danish psychiatrist, who believes ME/CFS is a functional somatic syndrome, wrote a letter of complaint.

Press conference

Watch a recording of the report launch event.

Responses

Researchers and clinicians

• Institute of Medicine report - Review (Peter White, 8 December 2015)
• What's in a name? Systemic exertion intolerance disease (The Lancet, 21 February 2015)
• Derek Enlander comment on Institute of Medicine report (19 February 2015, see also Derek Enlander)

Centers for Disease Control and Prevention (CDC)

On July 12, 2018, the CDC featured the IOM Report in full on it's ME/CFS home page. The prevelance data "estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed" are stated in the IOM report. The report's diagnostic criteria is outlined in the healthcare providers section.

Panel members

• Ellen Wright Clayton (Chair)
• Margarita Alegría
• Lucinda Bateman
• Lily Chu
• Charles Cleeland
• Ronald Davis
• Betty Diamond
• Theodore Ganiats
• Betsy Keller
• Nancy Klimas
• A Martin Lerner
• Cynthia Mulrow
• Benjamin Natelson
• Peter Rowe
• Michael Shelanski

See also

• Myalgic encephalomyelitis (ME) was the original name for chronic fatigue syndrome (CFS); the names are used interchangeably or with the acronym ME/CFS. The name SEID, although giving credence to the fact that patients are intolerant to exertion, does not capture the debilitating central nervous system symptoms patients experience as the name ME does.
• Pathways to prevention report
• Systemic Exertion Intolerance Disease

Generally accepted criteria for diagnosing ME and ME/CFS

• Canadian Consensus Criteria (CCC) A diagnosis of moderate and severe forms of ME/CFS are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
• International Consensus Criteria (ICC) This criterion will accurately diagnose myalgic encephalomyelitis (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, Fukuda, and SEID, which all require 6 months in adults.
• Systemic Exertion Intolerance Disease (SEID) ME/CFS (SEID) is accurately diagnosed when the core symptoms are met. The Institute of Medicine report as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.

Learn more

• 2013, Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract
• 2015, Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says

• Feb 17 2015, "A New Name, and Wider Recognition, for Chronic Fatigue Syndrome" by Meghan O’Rourke in The New Yorker

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

cognition Thought processes, including attention, reasoning, and memory.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

An adjective relating to the physical body or physical symptoms. It is often contrasted with the adjective "psychological", which refers to the human mind or mental symptoms. In biology, "somatic cells" refer to all the cells of the body, except those which form an egg or sperm.

somatic An adjective relating to the physical body or physical symptoms. It is often contrasted with the adjective "psychological", which refers to the human mind or mental symptoms. In biology, "somatic cells" refer to all the cells of the body, except those which form an egg or sperm.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.