Health Reform and Myalgic Encephalomyelitis

For a few days of my recent vacation, I was laid low by a viral infection which, along with other localized symptoms, included overwhelming tiredness and emptiness. That ennui which I felt to my bones was all-consuming. I have recovered, thankfully. Regarding the malaise which I had for a few days, has given me greater empathy for two of my patients who have had a similar malaise for years. These two patients, who were independently diagnosed, one at the University of Iowa in Iowa City, and the other diagnosed by a national expert in North Carolina, have a condition now called myalgic encephalomyelitis (ME).

It used to be called chronic fatigue syndrome. (CFS). Below I give you the US Centers for Disease Control’ad s (CDC) definition for ME/CFS:

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking, concentrating, pain, and dizziness. 

I have three other patients who may have the currently poorly treated condition. Both my diagnosed patients have gone through what one patient call her “brain crashes.”

During my 33-year career as a family physician, I can testify that previously patients with this condition have been tested thoroughly and when no other diagnosis was found, had been referred to a mental health specialist for an assumed mental health diagnosis. The stigma was an additional burden to these patients.

Having the CDC recognize this disease in July last year was a significant advance in at least providing these patients with a legitimate medical diagnosis to call their own.

We fight for universal health care coverage every day so these patients will have the ability to seek medical evaluation and care in a timely manner. We fight for universal health care coverage so this illness can be researched, understood, and ultimately, be well treated at a minimum, or cured.

Finally, how do people with this diagnosis affect health reform? The new twist of the Republican knife at the state level is a mandated work requirement for Medicaid recipients. My patient with the diagnosis made in North Carolina went to a disability medical evaluation and was denied. The medical examiner did not believe in the diagnosis. She is appealing the decision but it usually takes two years for a successful appeal to be granted. In the uncompromising Republican world of Medicaid, my patient, who can marginally function during the four hours a day when she is not in bed would be required to work in order to receive Medicaid. Unbelievable!

It is clearly time for universal health care.