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
Finding A Physician /
Before The Visit /
Assessing Your Physician /
Educating Your Physician /
Treatment
The Phoenix Rising website is compiled by a layman. It is not a substitute for a physician and is
for informational uses only. Please discuss any treatments in these pages with
your physician.
______________________________
CFIDS Association of America
Centers for Disease Control: CFS
Office Of Research For Women’s Health: Chronic Fatigue Syndrome