The CFIDS Monthly Update: November 2001

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The CFIDS Monthly Update

November 2001

Symposium to focus on Immunology of CFIDS

The third symposium in The CFIDS Association of America’s assessment symposia series was held October 21-23 in Bethesda, Maryland. A panel of scientific experts explored in-depth the immunological aspects of CFIDS, with special emphasis on interactions among and dysfunctions in the immune, neuroendocrine and autonomic nervous systems. The symposium was co-sponsored by the Centers for Disease Control and Prevention and the National Institutes of Health Office of Research on Women’s Health.

The goal of the Association’s assessment symposia series is to advance knowledge of CFIDS. Scientists from many different medical disciplines are brought together to evaluate research findings, identify the most promising next steps for research, define research and funding priorities and create research collaboration teams. The first two symposia explored findings in the autonomic nervous system and the neuroendocrine system; a fourth symposium is scheduled for Spring 2002.

Coverage of the immunology symposium will appear in the winter issues of The CFIDS Chronicle & The CFS Research Review, due out February 2002.

CFIDS research study needs participants

Dr. Julian Stewart of the New York Medical College is seeking adolescents with CFS ages 13-19 for a new study funded by the National Institutes of Health. The study will be conducted at Westchester Medical Center in Valhalla NY, near NY City, the Hudson Valley, NJ and Connecticut.

The primary goal of this study is to determine the cause of orthostatic intolerance (such as Neurally Mediated Hypotension and Postural Orthostatic Tachycardia Syndrome) in young persons with CFS. You do not have to have a diagnosis of orthostatic intolerance to participate in the study. Additional goals of the study are to determine whether midodrine is a helpful medication for CFS in teens and whether understanding the cause and subgroups of orthostatic intolerance in CFS can help predict who will benefit from treatment with midodrine. Also, by understanding more about orthostatic intolerance when it is resistant to treatment, scientists may get ideas about how to treat it in the future.

Visit: to participate or to learn more about the study Or, contact Dr. Stewart directly at: Julian M. Stewart, MD, PhD, Center Director, Professor of Pediatrics, Research Professor of Physiology, New York Medical College, Valhalla, NY 10595; Phone: 914-594-4370; E-mail:

“I Remember Me” documentary to premiere in November

Kim Snyder, filmmaker and CFIDS patient, will premiere her award winning CFS documentary “I Remember Me” November 9-22 in New York City at The Screening Room at 54 Varick Street. For details, visit or call The Screening Room at 212-334-2100.

Five years ago, Kim was stricken with CFS and was bedridden for nearly a year. Even today, CFS continues to compromise her health. In the midst of her illness, she set out on a mission to learn more about the baffling malady and in the process, made “I Remember Me,” the first full-length documentary to explore the history of CFS. Much more than an account of an epidemic unfolding, “I Remember Me” transcends the disease and speaks to the universal themes of loss, uncertainty, human perseverance and finally, hope.

Double your donation – for free – with matching gifts!

Thousands of people donate money to The CFIDS Association of America each year. Donors give what they can, when they can, to help us to reach our ultimate goal: conquering CFIDS.

But what if it you could double your donation at no extra cost? What if you could turn your $50 pledge into $100, or $100 into $200? Matching gift programs can make it happen.

The brainchild of former General Electric chairman Philip Reed, matching gift programs started as a way to encourage employees to support their alma maters. Today, 7,500 businesses and their employees contribute more than $2 billion each year to non-profit organizations. Most companies with a program will match an employee’s gift dollar-for-dollar, although some will even match 2:1.

Although many people with CFIDS are no longer able to work, there are still ways to take advantage of the power of matching gifts. Ask your spouse, your family members and friends to participate in their companies’ matching gift programs. Remind people about matching gifts at your next support group or church group meeting. Anyone who makes a contribution to the Association can have it doubled (or tripled) if they work for a company that sponsors a matching gift program.

To find out if a business participates in a matching gift program, ask the company’s human resources office or contact the Association’s development office at 704-364-0466 or online at We have details on thousands of companies with matching gift programs.

Matching gifts matter. Consider their power as you make your Annual Fund 2001 contribution to The CFIDS Association of America.

JAMA study misinterpreted

A review article in the September 19 issue of The Journal of the American Medical Association (JAMA) caused many members of the media to overestimate the effectiveness of graded exercise and cognitive behavioral therapy (CBT) for CFIDS.

The review’s authors, who examined 44 treatment studies conducted from 1986-2000, concluded that exercise and CBT have shown “promising results” in CFIDS. Stories began appearing in the mainstream media implying that these therapies can cure CFIDS, despite the fact the authors admitted there was insufficient evidence from the studies to draw any definite conclusions.

The CFIDS Association of America issued a statement that behavioral therapies are not a cure, and stressed that they can be extremely harmful to CFIDS patients. The Association pointed out that the exercise referred to in the article is graded therapy, conducted under the supervision of a skilled rehabilitation professional, not exercise as the general public understands it. The Association also asked members of its CFIDS Activist (C-ACT) and CFIDS Public Relations (CPR) teams to help counteract misperceptions about the illness and treatment by responding to coverage appearing in their local newspapers.

The Association’s statement on the JAMA article can be found on our web site at, as well as suggestions on how you can respond to local coverage, To receive a copy of these via first class mail, please call the Resource Line at 704-365-2343 or send a business size self-addressed stamped envelope to The CFIDS Association of America, Attn: JAMA Response, PO Box 220398, Charlotte, NC 28222-0398.

On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS

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