There is so much misinformation about ME/CFS out there, that it’s really important to identify trusted sources. Why is this an issue? When science doesn’t understand yet how something works, it tends to dismiss it’s existence, or attribute it to something else (mental health, laziness) that takes the focus off the shortcomings of the science. That is part of the history with ME. ME is very real. It has been documented for years, and serious, although underfunded, research is being done to understand the disease mechanism.
ME/CFS Fact Sheets My favorite is a one-page double-sided PDF file here titled “ME Diagnosis and Management” that I find in credibly helpful to share with folks. It includes sections on PEM, comorbidities, diagnostic tools, etc. It’s one of the things I’m most likely to share with a new caregiver.
The US Centers for Disease Control and Prevention (CDC) pages on ME The CDC pages were updated in the last couple of years, and are a great, solid place for folks in the US to point practitioners.
Symptoms of ME by the American Myalgic Encephalomyelitis and Chronic Fatigue Society. This has a great diagram and checklist of symptoms.
New York State Department of Health pages on ME . The NY DOH understands the seriousness of the illness:
“Myalgic Encephalomyelitis (my*al*gic + en*ceph*a*lo*my*eli*tis) (ME), commonly referred to as chronic fatigue syndrome, is a serious, debilitating, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body’s production of energy. Experts do not yet know the exact cause of ME, but many people start feeling the symptoms of ME after contracting a viral or other type of infection, or following surgery, physical trauma, or a change in hormonal status. It is possible that the symptoms of ME result from an abnormal response by the immune system, most often to an infection. This can impact the brain and other systems of the body. What is known is that ME is not a psychiatric disorder and it is not caused by a lack of exercise, contrary to common belief.”
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: What Every Family Physician Needs to Know, an article from the Winter 2018 issue of Family Doctor, a journal of the New York State Academy of Physicians. This is a 3-page piece with tons of references. Written by three regional experts: Mary Dimmock is the parent of a son with ME/CFS. She is a biochemist by training and retired from the pharmaceutical industry. She is on the board of Solve ME/CFS Initiative. Susan Levine, MD has been seeing ME/CFS patients in her clinical practice for over 30 years. She is Board Certified in Internal Medicine and Infectious Diseases and has served as past Chairperson of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). Terri L. Wilder, MSW is a volunteer with #MEAction (www.meaction.net) and was diagnosed with myalgic encephalomyelitis in March 2016. She received a Master’s in Social Work from the University of Georgiaand is the Director of HIV/AIDS Education and Training at Mount Sinai Institute for Advanced Medicine
The International Consensus Criteria for ME From July 2011. There are many different diagnostic criteria that have been proposed for ME. This is often considered the current standard.
The Institute of Medicine (IOM) Report by the National Academies of Sciences Engineering and Medicine. This is long. And one of the most helpful documents I can think of to review with close family, friends and caregivers for a full picture of hoe the disease may impact you individually. The PDF can be downloaded for free at the link. The summary from the website:
“Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological – rather than psychological – nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness – systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical – not a psychiatric or psychological – illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.”
Unrest is a documentary film by Jen Brea, an ME patient. Stream it online, buy it, attend a screening, get CME credit for watching it.