This page provide guidelines for medical practitioners on the diagnosis and treatment of ME/CFS that have been developed by panels of experts who are widely respected in the international ME/CFS community.
ME-CFS guidelines on US Government website
In early 2013, the US Government’s Health and Human Services’ Agency for Health Research and Quality published on their National Guidelines Clearinghouse website, a primer for clinical practitioners produced by the International Association for Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (IACFS/ME), the international professional medical association for ME/CFS. The purpose of this fact sheet is to assist health professionals by alerting them to these guidelines.
The IACFS/ME Primer for Clinical Practitioners
On May 15, 2012 the International Association for CFS/ME (IACFS/ME) released ME/CFS: A Primer for Clinical Practitioners. See the printable PDF of the 40-page primer on the IACFS/ME website. Notable features of the primer include:
- An ME/CFS Clinical Diagnostic Criteria Worksheet (pages 12 and 13), based on the revised Canadian ME/CFS Case Definition.
- Attention to special groups, including the severely affected, pediatric, and pregnancy.
- Members of the IACFS/ME Primer Writing Committee dedicated more than 2 years to development and vetting of this document. The 11 members are: Dr Anthony L. Komaroff, Fred Friedberg, PhD (chair and IACFS/ME president); Lucinda Bateman, MD; Alison Bested, MD; Todd Davenport, DPT; Kenneth J Friedman, PhD; Alan Gurwitt, MD; Leonard Jason, PhD; Charles W. Lapp, MD; Staci Stevens, MA; Rosemary Underhill, MB; Rosamund Vallings, MB.
In the forward for clinicians, Harvard physician Prof Anthony Komaroff, MD, says:
“In this Primer, the collected wisdom of many experienced clinicians and clinician-scientists has been gathered. Here, you’ll find advice on how to diagnose ME/CFS, and on therapies that appear to be beneficial, although not curative. I think you will find it useful.”
International Consensus Criteria (ICC)
In 2011 a 26-member International Consensus Panel, independent of any sponsoring organization, published International Consensus Criteria (ICC) for Myalgic Encephalomyelitis, intended to educate primary care physicians and specialists in internal medicine. The ICC were published in the October 2011 issue of the Journal of Internal Medicine (Carruthers BM, et al.) and are available free in a PDF file here or in html format here. In 2012 the Panel created a Myalgic Encephalomyelitis Adult & Paediatric International Consensus Primer (ICP) for Medical Practitioners, building on the International Consensus Criteria to provide easy-to-use diagnostic and treatment guidelines. It is available free in PDF format here.
The Canadian Consensus Critera (CCC)
The Canadian Expert Consensus Panel published a medical milestone in 2003, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome.
This work was initiated by Health Canada and completed by an international group of researchers. Diagnosis requires “two or more neurological/cognitive manifestations” and one or more symptoms from at least two of the categories of autonomic, neuro-endocrine and immune manifestations, in addition to multiple major criteria of fatigue, post-exertion malaise and/or fatigue, chronic pain and sleep dysfunction. The definition is also referred to as the Canadian consensus criteria.
This definition is clearly a vast improvement over the CDC’s 1994 case definition for CFS, which led to misunderstanding in both research and treatment modalities by making “fatigue” a compulsory symptom but by downplaying or making optional the disease’s hallmark of post-exertion sickness and other cardinal ME/CFS symptoms. In sharp contrast to the CDC’s 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neuro-cognitive, neuro-endocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. The complete 109-page article “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols,” was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116. An overview of the Canadian guidelines can be viewed online here or obtained as a pdf file here. The Canadian definition was updated in 2010 to provide greater specification to the original.
For pharamacists: “Beyond tired – helping patients cope with chronic fatigue syndrome”
This article was written to educate pharmacists on some of the strategies for managing ME/CFS. The authors say that, “Although no drug can cure or significantly decrease the core symptoms of ME/CFS, drugs are very useful for symptom management. Pharmacists are in an ideal position to educate patients about why certain drugs are being used and assist them in managing common side effects. This article provides an overview of ME/CFS, with a focus on pharmacotherapy based on the 2003 Canadian clinical practice guidelines developed by an international expert consensus panel.”
Stein, E & Campbell, J (2009) Beyond tired: Helping patients cope with chronic fatigue syndrome, Pharmacy Practice, Dec/Jan 2009, pp. 14-21.Download
Differentiation between ME/CFS, depression and other psychiatric conditions
ME/CFS should not be confused with depression and other psychiatric illnesses. The following document was written to help psychiatrists know the difference. It has advice for management of the depression and anxiety that do sometimes occur in ME/CFS and contains helpful information on the (limited) value of Cognitive Behaviour Therapy and Graded Exercise Therapy in ME/CFS.
Stein, E (2005) ‘Clinical Guidelines for Psychiatrists: Assessment and Treatment of Patients with ME/CFS’.Download
Treating children with ME/CFS can present its own particular problems. This Case Definition was written to help doctors working with children with ME/CFS: Jason, L (2006) ‘A Paediatric Case Definition of ME/CFS’, Journal of Chronic Fatigue Syndrome, vol. 13, no. 2/3.Download