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 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.
How Sick Am I?
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.
Support and Connection
Ithaca NY Area ME/CFS Support on Facebook. A place for ME/CFS patients in the Ithaca, NY area to connect, share resources, and find support.
#MEAction New York on Facebook. This is a group for New Yorkers living with or affected by ME.
Myalgic Encephalomyelitis Global on Facebook. This is a large (almost 12,000 member) group. The purpose of this group is for people with ME/CFS (and/or their carers) to interact and support each other while living with these chronic illnesses. It provides a place where people can share helpful tips, ask questions and learn from each other’s experiences, band together and support each other to create better lives for ourselves and others.
25% of ME: Support Group for Severe CFS/ME on Facebook. This is a support group for housebound and/or bedbound folk with CFS/ME and their caregivers.
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
ME/CFS Pacing With a Heart Rate Monitor 2 on Facebook
ME/CFS: Below the Threshold on Facebook is an information resource maintained by Angela Flack, who also manages the Holistic Myalgic Encephalomyelitis site mentioned above. It is more structured than most FB groups. This group is structured as a learning resource. Within the group, the information is organised into master threads. Please post your questions on the related master threads: the intro content is in the unit posts, and other master threads are pinned in the announcements.
Advocacy and Education
A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
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.
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.
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 ME, CFS, and related diseases.
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.
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.
Cort Johnson’s site is packed full of information for patients, and regularly updated with analysis of current research developments.
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
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