Patient and Physician Information
Anesthesia
Information about anesthesia
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
Education
CFIDS: Educational Rights, Responsibilities and Options
Guidelines for Schools: Understanding and Accommodating CFIDS and FMS
Employment
The Americans with Disabilities Act: CFIDS and Employment
Prescriptions
Help For Prescriptions For CFIDS Sufferers
Our thanks go to Joseph DeCuir of Hollywood who has helped with prescriptions for CFIDS patients for many years but has now retired.
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 they're 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.
Signs and Symptoms
Sign-symptom complex compiled by Dr. Cheney
