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.
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
tel.: 323-461-3606
fax: 323-461-3600
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.
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.
