CFIDS News

Ampligen advisory panel planned
A meeting to form a CFIDS Ampligen Community Advisory Board (CAB) is expected to be held in July in Las Vegas, Nev.

The CFIDS Ampligen CAB is modeled after advisory boards set up by the AIDS community to monitor clinical trials of AIDS drugs and to push for fast-track approval of promising drugs.  Members of the board are volunteers who address issues such as adverse reactions and other patient questions, concerns and grievances.  They also seek to monitor procedures at each trial site and to ensure that each trial participant is fully informed about the drug and understands any risks.  A community advisory board also can act as liaison between the federal Food and Drug Administration (FDA), the drug manufacturer and the community.

A meeting was help in May in Philadelphia between CFIDS activists, including several who are taking Ampligen, and representatives of Ampligen manufacturer Hemispherx Biopharma, including company president William Carter.  At that meeting, a steering committee was chosen to coordinate plans for a meeting to elect a CAB for Ampligen.  The company is funding the effort.  For more information on the CAB project, visit web site www.best.com/~cfids.

All past and present Ampligen patients and other interested CFIDS patients are welcome to attend the Las Vegas meeting and participate in the election of the CAB members.  For more information, contact Trudy Rink, steering committee secretary, by E-mail at atrink@truckee.net or by phone at 530/587-6428.

New Zealand doctor tours U.S.
Dr. Les Simpson of Dunedin, New Zealand, visited numerous support groups and local CFIDS organizations in May to talk about his theory that changes in the shape of red blood cells, coupled with unusually narrow capillaries, may play a role in CFIDS.  Dr. Simpson explained that normal red blood cells are flexible enough to slip through the tiny capillaries where oxygen is released into the tissue.  The problem occurs when something, possibly infection or a chemical exposure, triggers a change in the shape of red blood cells and makes them more rigid.  That restricts the circulation of the red blood cells and reduces the delivery of oxygen to selected organs and muscles.

Dr. Simpson recommends two basis treatments:  injections of 1 mg hydroxocobalamin (a form of vitamin B-12), which he said has helped about 50% of the patients he has seen, and evening primrose oil, which he said helped about 70% of patients.  He said he could not explain why many patients don't respond to those treatments.  Dr. Simpson accepted blood samples from patients at his lectures for analysis at his lab in New Zealand.

Among the stops on his four-week tour of the U.S. was an appearance on Dr. Robert Mazlen's CFS Radio show in New York. A transcript of the May 23 show is available at members.aol.com/rgm1/private/transcr.htm. (Dr. Simpson's theory was previously described in detail in the Summer 1995 Chronicle.

Banner draws attention
Perfect weather greeted CFIDS advocates in Washington, D.C., at the start of CFIDS Awareness Week.  Organizers of the Sunday rally at the Capitol building reported that not too many PWCs or family members were able to mak eit, but the banners that were prepared for the event made a great backdrop.  Next year, they're hoping to display them inside the rotunda of the Capitol Building.

"Our goal is to have a large enough display to get the attention of every congressperson, senator, aide, and visitor," said Shelly Kaufman, one of the project organizers.  "They have no idea how many of us there are.  Don't forget our rallying cry of 'invisible no more.' "

To inquire about the availability of the Banner for CFIDS/FMS/M.E./GWS events, contact Paula Frighetti, 7133 E. 28th St., Tucson, AZ 85710 or San Grier, 1201 W. Gage Ave., Fullerton, CA 92833-4731.  They can be reached by E-mail at willow@azstarnet.com and sangg@home.com.

Michelle Akers at World Cup
Michelle Akers, who has courageously ocntinued playing professional soccer despite CFIDS, was back on the field again this summer with the U.S. team in the World Cup.  During the tournament, Michelle's Christian organization, Soccer Outreach International, distributed 20,000 pamphlets telling the story of her playing success and her struggle with CFIDS.  She also talked about CFIDS in numerous media interviews (see "Media Watch" in this issue).