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FAQs

How do I find a doctor?

“How do I find a doctor?” is the first question asked by every ME/CFS patient. Unfortunately, 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.

The American ME and CFS Society 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.  If you have seen one of these physicians, please leave a review. Your experience will help others.

 

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 some families, both husband and wife are ill, and in other s, a parent and children may be ill, which also suggests contagion.

Identifying the pathogen has proven difficult, because 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. Otherwise, every family member, every friend, acquaintance, or coworker would also fall 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 acutely ill, and do not donate blood if you have the disease yourself.

 

I have so many symptoms. Are they all due to ME/CFS?

ME/CFS has a wide array of symptoms, which may lead you to attribute every symptom you experience 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. Commonly, patients also have comorbidities, such as hypothyroidism. If your vision is blurry, you may in fact have cataracts, or your perpetual thirst may be due to diabetes. These infections and conditions must be treated.

If you begin to experience new symptoms, tell 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 suggests that estrogen is a factor, especially as it relates to immune function. Estrogen enhances immunity, but when the immune system is overstimulated healthy cells may be destroyed. 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?

The uncertainty caused by having a chronic illness, especially one that has “no known cause or cure,” provides fertile ground for speculation. It is astonishing how many different reasons the popular press and, regrettably, physicians,  have devised to explain ME/CFS: “working too hard,” “stressful childhood,” “Western diet,” are just a few.  If these could indeed cause ME/CFS, everyone would have it.

The truth is that people who contract ME/CFS didn’t cause their disease, they caught 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. It has to be either a pathogen or a toxin.

Stress, unhealthy eating habits, and over-extending yourself will certainly exacerbate ME/CFS, but none of those things can cause the disease.

 

REFERENCES

Ekua W. Brenu, Lotti Tajouri, Kevin J. Ashton, Donald R. Staines and Sonya M. Marshall-Gradisnik (2013). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Parallels with Autoimmune Disorders, Genes and Autoimmunity – Intracellular Signaling and Microbiome Contribution, Prof. Spaska Stanilova (Ed.), ISBN: 978-953-51-1028-6, InTech, DOI: 10.5772/53440.  http://www.intechopen.com/books/genes-and-autoimmunity-intracellular-signaling-and-microbiome-contribution/chronic-fatigue-syndrome-myalgic-encephalomyelitis-and-parallels-with-autoimmune-disorders

Jason, L.A., Richman, J.A., Rademaker, A.W. et al., A community-based study of chronic fatigue syndrome, Arch. Intern. Med. 159 (18), 2129-2137 (1999).  http://www.ncbi.nlm.nih.gov/pubmed/10527290

Reyes, M., Nisenbaum, R., Hoaglin, D. et al., Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas, Arch. Intern. Med. 163, 1530-6 (2003).  http://www.ncbi.nlm.nih.gov/pubmed/12860574

Steele, L., Dobbins, J.G., Fukuda, K. et al., The epidemiology of chronic fatigue syndrome in San Francisco, Am. J. Med. 105 (3A), 83S-90S (1998). http://www.ncbi.nlm.nih.gov/pubmed/9790487