FAQ's by Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Patients
How do I find a doctor?
Finding a doctor who understands ME/CFS is not easy. There are very few specialists, and most of these are expensive, not covered by insurance, and have long waiting periods for appointments. There are, however, a number of doctors, who, while they do not specialize in the disease, have enough experience to diagnose it, and can provide much needed guidance.
ProHealth provides a doctor database of physicians who have treated patients with ME/CFS. While we cannot personally endorse these physicians, ME/CFS patients have found them to be helpful.
Is ME/CFS contagious?
There have been over 60 outbreaks of ME/CFS, which means an infectious pathogen is involved, at least at onset. In a few families, both husband and wife are ill, and in other families, a parent and children may be ill, which also suggests contagion.
The problem is that most patients are diagnosed only after having reached the chronic stage, by which time it is impossible to find the original culprit. It also appears that the disease is not easily transmissible once it has taken hold, because there are very few instances of all members of a family falling ill.
Until researchers have identified a pathogen, it is best to be on the safe side. Do not share drinking glasses with members of the family who are ill, and do not donate blood if you have the disease yourself.
Are all my symptoms due to ME/CFS?
ME/CFS has a wide array of symptoms, which may lead you to attribute all of them to the disease. But there is nothing in nature that says you can only have one illness at a time. Many, if not most, patients have secondary infections, such as small intestine bacterial overgrowth (SIBO) and comorbidities, such as hypothyroidism. These must be treated. If you begin to experience new symptoms, go to your doctor, and get tested.
Why does ME/CFS primarily affect women?
In the adult population, women with ME/CFS outnumber men by a factor of 3 to 1. (Roughly 75% of ME/CFS patients are women.) However, in pediatric cases, patients are evenly divided between boys and girls. This points to the role estrogen plays in immune system function. Estrogen enhances immunity, but when the immune system is overstimulated, it can lead to the destruction of healthy cells. When the attack is sustained, the result is autoimmunity.
All autoimmune diseases primarily affect women. Over 90% of Hashimoto's disease patients are women. Lupus, Sjögren's and autoimmune hepatitis also overwhelmingly affect women.
While not everyone agrees that ME/CFS is an autoimmune disease, there are a number of studies which support that theory. In a review of 180 research articles, Ekua Brenu et al. concluded that "CFS/ME may have a potential to be described as autoimmune, as this is the only consistent immunological abnormality associated with CFS/ME."
Why me? What did I do wrong?
There is a natural tendency on the part of people who fall ill to attribute their illness to something they have done. It is astonishing how many different reasons patients devise to explain ME/CFS: "I was working too hard," "I had a traumatic childhood," "I ate canned food," and so on.
The truth is that people don't cause their disease, they catch it. If you have ME/CFS, you were simply in the wrong place at the wrong time. The proof of this lies in outbreaks. When several hundred people contract ME/CFS at roughly the same time - as in the Incline Village, Lyndonville, and Royal Free outbreaks - the explanation cannot possibly lie in what type of food they were eating, lifestyle choices, or stress.
You did nothing wrong.