Myalgic Encephalomyelitis

ME/CFS Fact Sheets

The US Centers for Disease Control and Prevention (CDC) pages on ME

New York State Department of Health pages on ME

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

The International Consensus Criteria for ME

The Institute of Medicine (IOM) Report  by the National Academies of Sciences Engineering and Medicine

Unrest is a documentary film by Jen Brea. Stream it online, buy it, attend a screening, get CME credit for watching it.

Tools

How Sick Am I?

ME Disability Scale

The Hummingbirds’ Foundation for ME 3 Part M.E. Ability and Severity Scale

Two-Day Cardio Pulmonary Exercise Testing

Until a true biomarker is identified, a 2 day CPET is the best way to “prove” ME by measuring anaerobic threshold and post-exertional malaise (PEM). This test is only offered in three US locations that I’m aware of, in NC, CA and NY (Ithaca). The test should be considered carefully, as it can cause significant crashes or setbacks. Health Rising article. It has been useful in applications for SSDI.

Pain scales are tricky for folks with chronic pain to navigate. I like the one at the bottom of this article, which can bee seen on its own here. There’s a printable version in here.

Heart Rate Pacing

Using A Heart Rate Monitor To Prevent Post-Exertional Malaise In ME/CFS is a great overview of heart rate pacing.

Holistic Myalgic Encephalomyelitis : Angela’s site has lots of information, but what makes it really special is the information on heart rate pacing and using heart rate variability data.  Anyone interested in trying this approach to manage their ME/CFS should start with her HRM Master Page.

One reason we need to be even more conservative when calculating pacing numbers, is that many of us also have Chronotropic Incompetence. Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

The Polar A360 and A370 watches are very popular across the heart rate pacing community. (Fitbits do not work for our purposes, but I hear that Apple watches do, and some use Garmin products.) But setting the watches up for heart rate pacing is a mysterious, painful process. An acquaintance put together a guide of how to do it, and told me I was free to share broadly and she didn’t need credit: Polar watches setting HR zones, vib alert and annotating print screens- a370

Advocacy and Education

ME Action

A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

American ME/CFS Society

The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients.

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), since being founded in 1987. SMCI envisions a world free of ME/CFS and works steadfastly to make this disease understood, diagnosable, and treatable. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.

 

Patient-Driven Resources

MEpedia

MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of MECFS, and related diseases.

CFS Remission 

CFS Remission is a dense website focusing on microbiome analysis and intervention for ME/CFS, Lyme, Fibromyalgia, etc. If you’ve had microbiome analysis done and want to learn more, this is a great place to go. Same if you’re thinking about adding a probiotic to your health interventions.

Phoenix Rising 

A very information site. I most often end up here because of the very active forum community it hosts. It is a great place to ask and answer questions.

Health Rising

Cort Johnson’s site is packed full of information for patients, and regularly updated with analysis of current research developments.

 

Research

Open Medicine Foundation: Our mission at Open Medicine Foundation (OMF) is to fund and initiate collaborative and groundbreaking research into chronic complex diseases so that patients will be able to live life more fully.

Ron Davis is one of the most visible and outspoken ME/CFS researchers. He is on the board of the Open Medicine Foundation, and works out of Stanford University. His accomplishments in the field of genetics have led him to be recognized as a top innovator of our times.

Maureen Hanson at Cornell University’s Center for Enervating NeoroImmune Disease

Jarred Younger at University of Alabama at Birmingham’s Neuroinflammation, Pain and Fatigue Laboratory

Betsy Keller profile: Tireless Work on Chronic Fatigue Syndrome

Nancy Klimas at Nova Southeastern University’s Institute of Neuro Immune Medicine

Workwell Foundation in California pioneered the use of 2 day CPETs