Out and About
The spring 2004 issue of the CFIDS Chronicle, the
Association’s quarterly magazine, features a cover story about free/low-cost
pharmaceutical programs offered by many drug companies. Pfizer recently
announced a major expansion of its program, including institution of a more
generous maximum income, up to $45,000 per family. For additional information,
Through the Association’s provider education program,
participants at the American Physical Therapy Association national conference
(June 30-July 3) had the opportunity to learn more about helping CFIDS patients
achieve greater function and better quality of life. Likewise, the Georgia
Academy of Physician Assistants annual meeting (July 28-30) featured a
presentation on the diagnosis and management of CFIDS. Drs. Leonard Jason and
Fred Friedberg and social worker Pat Fennell presented a CFIDS program at the
American Psychological Association annual convention on July 30. On November 8,
a CFIDS presentation will be given at the American Public Health Association
annual meeting. Other continuing education programs and conference presentations
are planned; watch CFIDSLink for regular updates.
Dr. David S.
, a beloved doctor,
expert and forward-thinking clinical researcher has re-introduced his
newsletter, The Lyndonville News. In the
introductory online issue, he comments that he writes for relaxation and therapy
and hopes to publish every 6 to 8 weeks, but makes no promises. The newsletter
is offered free of charge by e-mail (send a message to LynNews@Lakeplains.Net),
or for $10 by regular mail. Literature reviews, research and Q&As may fill
future issues, but he states that he will, “not present defamatory statements or
politically charged statements unless I feel like it.”
In closing his commentary, he notes, “Patients with ME/CFS/FM
are in a really difficult position. They feel lousy but look great. Because they
look great, no one thinks they are sick. Because no one thinks they are sick
they are disrespected. Because they are disrespected, they feel even more lousy.
Someday soon, the day will come when the important people in medicine will say,
“I knew they were really sick all along.” Dr. Bell currently chairs the federal
government’s CFS Advisory Committee.
Celiac disease, caused by an allergy to gluten,
shares many symptoms with CFIDS. In addition to gastrointestinal symptoms like
diarrhea, bloating and cramping, many celiac disease patients also complain of
joint pain and persistent fatigue. Gluten, a protein found in wheat and other
grains, triggers an immune response that blocks the absorption of nutrients.
It’s diagnosed with a blood test followed by a biopsy of the bowel. Avoiding
gluten is the only treatment available, but it’s quite effective if diligently
followed. Dieticians can help guide selection of alternative products. Congress
is currently considering a bill to require that product labels reflect the
presence of gluten. CFIDS patients with prominent GI symptoms might consider a
trial gluten-free diet to see if symptoms improve. Learn more about celiac
disease and the Food Labeling Bill at http://www.celiac.org/
Cases of Lyme disease doubled from 2001 to 2002
according to recent figures released by the Centers for Disease Control. Cases
have been reported in 43 of the 48 contiguous states, although most of the
disease burden still falls in the northeast. The agent that causes Lyme disease
is transmitted by the deer tick; symptoms mimic CFIDS and include fever, sore
throat, joint pain, headache and severe fatigue. The tell-tale round rash at the
bite’s site is not always present and standard tests are not always reliable.
Consult a physician if you live in an endemic area or have other risk factors.
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