May - June 1999
March 1999 fundraiser update
March 24, Marc Iverson
wrote to the Association's members and donors to share his vision for heightened awareness and greater
understanding of CFIDS. He previewed program changes and outlined a five-point action plan for change
that will build recognition for CFIDS as a serious and widespread medical disorder; secure a meaningful
response to CFIDS from the federal government; stimulate high quality CFIDS research; improve health-care
providers' abilities to detect, diagnose and manage the illness; provide current, complete and credible
information to all persons with CFIDS; and enable the CFIDS community to speak with a collective voice.
thanks to those of you who have committed to being part of the change that will mean better living for
all people with CFIDS.
If you have not yet made a gift to help build recognition for CFIDS
as a mainstream medical concern, please do so today. Your generosity will help expand Association programs
that will end the stigma associated with CFIDS, create awareness, direct millions of federal dollars into
expanded research efforts, lead to effective, new treatments and put the cure for CFIDS within reach.
send your tax-deductible contribution to The CFIDS Association, PO Box 220398, Charlotte, NC 28222-0398.
You may use the form on page 37. To donate by credit card, call the Resource Line at 704/365-2343, fax
information to 704/365-9755, or make a donation through our secure web site at www.cfids.org.
you so much for your generosity and for your vision.
Rest-a-Thon fundraiser results
last fall raised $1,155 to support the pediatric CFIDS research of Dr. Marc Ovadia of North Shore University/NYU
School of Medicine, Manhasset, N.Y.
Contributions were received through the efforts
of six participants: Anonymous in Colorado; Sarah Massack of Strabane, Pa.; Anonymous in Canada;
of Fort Wayne, Ind.; Rebecca Ann Duger of Elbridge, N.Y.; and Janelle Auch of Troy, Mich.
Ovadia's research group has found that children who have CFIDS repond differently to a tilt test than
children with neurocardiogenic syncope. Dr. Ovadia's group does tilt tests after administering and then
withdrawing beta blockers. In neurocardiogenic syncope, beta blockade delays the drop in blood pressure,
while preliminary data shows that beta blockade hastens that response in children with CFIDS. This project
is co-sponsored by the Children's Clinical Research Center at Cornell University. Among the project's
goals is to assess the therapeutic effects of midodrine, an alpha antagonist which seems to be effective
in CFIDS, and propranolol, which is effective in neurocardiogenic syncope but apparently not in CFIDS.
Improved Internet resource for YPWCs
has revamped its youth
web site to include all articles we've ever published on CFIDS in children and
adolescents. Please visit us on line at
Provider education moves forward
to promote CFIDS awareness and understanding among health-care providers will take a step forward on May
21-22 when the Provider Education Advisory Committee meets in Charlotte.
The committee will guide
the CFS Training Project being produced by the Illinois Area Health Education Center in cooperation with
The CFIDS Association of America. The project will focus on what primary care providers need to know:
how to recognize, diagnose and manage CFIDS. (For more about physician education initiatives, see D.C.
Dispatch this issue.)
Financial disclosure rules met
Internal Revenue Service
regulations require non-profit organizations to provide copies of their applications for tax exemption
and annual information returns to anyone who requests them. The rules are being imposed because many organizations
made it difficult for people to obtain this information, since the old rules required only that the documents
be available for public inspection at the organization's office. While The CFIDS Association has always
provided this information to anyone who asked, we will take the added step of making the required information
available on our web site, www.cfids.org. The information will be posted
on the site after the May 15 filing deadline for non-profit organizations and before the new regulations
take effect June 8. If you make a written request for this information, the regulations allow organizations
to charge a reasonable fee for copying and mailing. For now, the Association will continue to provide
the information without charge.
However, we would appreciate if such requests included a self-addressed
business envelope with $1.21 postage.