Educating Your Doctor About Chronic Fatigue Syndrome (ME/CFS)
Many people don’t have the ability to search for a good chronic fatigue syndrome (ME/CFS) physician. If you’re seeing a physician that you sense doesn’t know a lot about this disease but wants to learn more consider yourself lucky and use the following to help them out.
The CFIDS Association of America (CAA) will send an information packet containing basic information on chronic fatigue syndrome (ME/CFS) to your physician if you request it.
The New Jersey Chronic Fatigue Syndrome Association provides free downloads of an approximately 80 page Consensus Manual For the Primary Care and Management of CFS that covers diagnosis, research and treatment. This document was created by CFS professionals in collaboration with the New Jersey Dept. of Health.
The Centers For Disease Control (CDC) A physician ‘toolkit’ available at the Centers for Disease Control’s (CDC’s) website provides easy access to basic facts on how CFS is diagnosed and treated and why it is believed to occur. The CDC has an online continuing medical education (CME) course on chronic fatigue syndrome (ME/CFS) physicians can take for credit.
A CME Course “Chronic Fatigue Syndrome: From Diagnosis to Management” became available on Medscape in Oct. 2008.
Dr Lapp has built a “Quick Start’ guide for physicians new to chronic fatigue syndrome (ME/CFS).
The International Association of Chronic Fatigue Syndrome/ME (IACFS/ME) Your physician might also be interested to know a professional medical organization dedicated to understanding this disease exists. The International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) disseminates information, provides expert testimony to congressional committees and at scientific conferences, and produces the bi-annual International ME/CFS Conferences.
Federal Research Efforts – Both the CDC and National Institutes of Health have long term research programs on CFS.
The CFS Advisory Committee (CFSAC) is oone of the very few federal advisory committees specifically devoted to one disease. The CFSAC monitors the governments response to CFS and provides recommendations to the Secretary of Health. Meeting reports are available at the CFSAC website.
The CFS research program at the National Institutes of Health resides in the Office of Research into Women’s Health. The ORWH site contains some information on CFS as well as a free overview of the Conference on Neuro-Immune Issues in CFS.
Phoenix Rising – if you feel you really have a partner consider printing out a copy of the Phoenix Rising newsletter and giving it to them. This newsletter – produced by myself – an ME/CFS patient – provides up to date summaries of the latest research efforts