Patient and Physician Information about CFIDS/ME

Anesthesia has adversely affected patients with CFIDS (also known as chronic fatigue syndrome and myalgic encephalomyelitis). The reason for this has been found. Recent research* funded by the National CFIDS Foundation, Inc. found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the "ciguatera epitope," this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.

*J Clin Lab Anal, 6/2003, Hokama et al, J Toxicology, 12/2003, Hokama et al.

The National CFIDS Foundation had an offer from a man who knows firsthand what it is like to have a loved one suffer from a chronic illness. His 19 year old daughter died of leukemia last year. In her memory, a new program has been established to give you your prescription drugs at his own cost paying only for shipping, handling, and UPS delivery.

Although drug companies have plans that give access to drugs to destitute individuals, many do not qualify who still have difficulty paying for their prescription drugs. You need only a licensed physician's prescription to qualify for this program. You may fax or send your prescription to this California company and your prescription will be mailed to you via UPS.

Address:
Consumer's Discount Drug
Joseph DeCuir, proprietor
6542 Hollywood Blvd.
Hollywood, CA 90028

No personal checks are accepted. Money orders or credit cards may be used. This offer has been made to other organizations such as the National Cancer Society, but The National CFIDS Foundation is the first one to utilize this wonderful gesture and put out the information for patients. It will be announced, as well, in the summer issue of The National Forum. You need only to be a patient to qualify for this program.

Research

How You Can Help Advance Research

If you're facing a surgical procedure in the future, you can help advance research! We are funding several different novel studies that are in need of tissue samples. If you must have surgery and have a diagnosis of CFIDS/ME, you can be an invaluable help.

A tissue sample is a simple procedure that involves a very thin scraping of skin during the surgical procedure. This is put on a slide and affixed with paraffin. If you ask your surgeon to take two slides of each area s/he's able to and mail them to us, we will forward them to the researchers.

Your privacy is always protected. The researchers will have only your age, your sex, and the type of surgery done. They will not have any other identifying information. The National CFIDS Foundation, Inc. will ask you to sign a privacy release form but the form itself explains that your information will go no further! By law, however, we have to inform you of your rights and have your signature.

Please note that we are not asking anyone to submit to any invasive procedure merely to advance research. This is not recommended nor is it necessary. Samples should be sent directly to our office, but remember that we must have your signed permission first. (Please contact us via email or by phone at 1-781-449-3535 ahead of time.)

If you are facing any surgical procedure, please present a copy of our anesthesia protocol to the anesthesiologist prior to the surgery so that they will know to avoid the sodium channel.