Most people who receive the diagnosis of CFS or ME are told that there is “no known cause or cure.”
The lack of known cause or cure, while discouraging, does not imply that an illness cannot be treated, or that those who suffer from it will not recover. Herbal remedies, their pharmaceutical derivatives, massage and manual manipulation techniques, nutritional supplements, and stress reduction methods, such as meditation and biofeedback, have been successfully used to help ease the most troubling symptoms of ME/CFS.
In addition to pharmaceuticals, supplements, therapies, and coping techniques, there are also experimental treatments which address the underlying immune system dysfunction that characterizes the disease – such as rituximab and Ampligen. While these have not been approved by the FDA for treating ME/CFS, a number of severely ill patients have reported that with these treatments they were able to get out of bed and resume activities, which is a vast improvement for people who have been bedbound.
Not all treatments work in the same fashion for all patients, which has led to the false conclusion that “nothing works.” In reality, everything works. A survey conducted in 2008 by the ME Association (UK) of 4,217 ME patients revealed that there was no treatment that had uniform results across the board. However, patients reported that for specific symptoms, some treatments were more effective than others. There was no treatment or therapy on the survey that helped nobody, nor was there a treatment that helped everybody. (To read the survey go here: http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf)
What works for an individual depends on the severity of the illness, the length of time a patient has been ill, and the constellation of symptoms the patient experiences. All of these factors enter into the decision of which treatments to try. An understanding of the how the illness affects you – your symptoms, your reactions to different treatments and therapies, and the pattern (if any) of your ups and downs – is essential for making an informed choice, as is doing some research on treatments you have heard about, or which your doctor recommends.
Dr. Patricia Salvato, a specialist practicing in Houston, Texas, expresses this idea eloquently:
“Well-informed patients simply make for better partners in health-care, and, when knowledge is shared, everybody benefits; there is an unbelievable amount of healing in just the sharing of new knowledge” (Mass CFIDS Update, Summer 1996).
Rules of Thumb
Because most patients with ME/CFS have numerous sensitivities to chemicals, medications, and food, as well as outright allergies, it is important when trying a new medication, supplement, or therapy to follow these important guidelines.
Start low – always begin with a very low dose. This may involve cutting tablets in half or in quarters, or beginning with a pediatric dose.
Go slow – try new treatments one at a time. Depending on the severity of the illness, you may want to leave a week or more between new treatments. This will give you enough time to gauge the impact on your symptoms.
Keep a record – make sure to write down your responses to anything you try. Given the waxing and waning pattern of the disease, you may have trouble deciding if a treatment is helping you, or making you worse. If that is the case, you may want to discontinue for a few days (after a fair trial) to see if your symptoms change.
Make a backup plan – always have another treatment “waiting in the wings.” If one treatment does not work, there will be a second (and third) to try. Keeping up your morale is important, and nothing overcomes disappointment like a treatment plan.
Although it is a long, hard process, do not give up – no matter how many treatments you have tried. Even in some of the most protracted cases of ME/CFS, patients have found that there can be a breakthrough that offers them significant improvement. (This was the case for rituximab.) It is important to keep in mind that diseases are often unpredictable, and what may not help now can help later.