E-NEWS from OFFER
CFS/FM EDUCATION MEETING
"What we have observed throughout the study," reports Dr. Lucinda Bateman, "is that patients who received the full course of drug (more than 64 weeks) were most likely to show improvement, and some have improved significantly. These patients who have improved significantly will probably slowly relapse once the drug is stopped. Some of the patients who enrolled in the early group have already experienced this decline, losing much of the progress they made.
Of the patients who were on placebo for 40 weeks and received Ampligen for only the last 24 weeks, we now know that this is not long enough to see a complete response to the drug. These patients will end the study not knowing if they are truly an Ampligen responder, even after their huge investment of time in this research."
In response to this unfortunate situation, OFFER is mounting a fundraising campaign to provide continued use of Ampligen for these heroic patients until the drug is approved by the FDA----those who have responded and now stand to lose their improved health, and those who weren't able to take the drug long enough to know if they are responders.
The funds needed to continue this study is $15,000 to $20,000 for the first two months alone! Raising funds for continuing the study another six to twelve months would be ideal. Time is of the essence as the funds are needed by the end of August.
How can you help? If you have any ideas about how to raise this money quickly we would appreciate your help. Help us help others by supporting this worthy cause with multifaceted benefits. For more information contact Ted Kaly at tkaly@offerutah.org
IN THE NEWS:
Modafinil treatment for CFS & FM shows promise
http://www.cfids.org/cfidslink/Modafinil.asp
http://www.immunesupport.com/library/print.cfm?ID=5770
HELP IN MANAGING SYMPTOMS:
Proper Sleeping Positions Slide Show
http://www.mayoclinic.com/invoke.cfm?objectid=626CB6D8-2DA8-47FF-A3176754517DC387&slide=4&isagg=0">
Dry eyes
http://www.mayoclinic.com/invoke.cfm?id=DS00463
HOW CAN YOU HELP?
WANT TO VOLUNTEER WITH OFFER?
Volunteers are needed for the following committees: Advocacy, Conference Planning, Education Meeting, Fundraising and Publicity, Research Development, and Volunteer Committee which includes office help and the call center. Contact Carol Arnzen at: offerregistration@yahoo.com
Additional Resources:
ARTHRITIS FOUNDATION: OFFER is proud to work with The Utah/Idaho Chapter of the Arthritis Foundation to provide information and programs for individuals with fibromyalgia and chronic fatigue.
FM CONNECT is a free online resource for local information about fibromyalgia. It features articles by Utah and Idaho health care practitioners, researchers, and other fibromyalgia experts. There's also a calendar of events, including exercise and self-help programs. Check out FM CONNECT at the address below and signup for a free monthly email newsletter. http://www.arthritis.org/Communities/Chapters/Chapter.asp?chapid=62#FMS
FIBROMYALGIA AND ARTHRITIS SELF- MANAGEMENT COURSES are six week courses to learn about pain management, nutrition, exercise, relaxation, medication & more. Seats are limited. Register today by calling Victoria at 536-0990 or sign up online at http://www.arthritis.org Course fee varies by location, includes text book and resource materials. Limited scholarships available based on need.
FIBROMYALGIA AQUATIC CLASS at T.O.S.H. (5848 S. Fashion Blvd. in Murray.)
Warm-water exercise class meets every Mon./Wed./Fri. from 5-6 PM. Call 314-4046 for more information.
FOR MORE INFORMATION ABOUT OFFER:
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