The Good, The Bad, and The Ugly News About ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

In my practice I see patients with chronic fatigue syndrome every day. They have chronic physical and mental fatigue, which gets worse when they exert themselves, and it takes longer than normal to recover.

Two weeks ago, I attended the 11th Biennial International Conference of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) in San Francisco. For four full days, there were workshops and scientific papers presented by experts in the field from major universities and research centres from around the world.

Here is the good, the bad, and the ugly news about ME/CFS (ME/CFS and CFS/ME are used interchangeably).

The good and the bad co-exist. Over the years, many of the studies have suggested and continue to suggest a hidden infection, but this infection has yet to be found. So we still don’t know the cause of the disease as yet. Multiple studies continue to demonstrate that these people have elevated levels of a variety of chemical messengers from theimmune system, and the higher the levels, the more severe the fatigue.

There is also strong evidence for brain dysfunction. Studies show abnormal scans and electrical activity in the brain. These findings support the observations found in other studies that demonstrate decreased mental processing, which worsens with mental exertion and fatigue. This makes sense because the studies of cell function show damage and poor energy production.

Unfortunately, none of these abnormalities are specific for ME/CFS. In other words, while these tests emphasize the physical, biological nature of the condition, there is no test to “prove” that someone has it. As a result, some doctors will continue to argue that ME/CFS is a psychiatric condition, most likely depression. This is the ugly.

But the evidence continues to mount that they are wrong. People with mental illness feel better when they exercise, but people with ME/CFS get worse with exertion, and several studies show particular abnormalities to help explain it. When these patients exert themselves physically, there is increased fatigue in muscles used for breathing and reduced oxygen uptake by the muscles used in exercise. When people with CFS/ME are pushed to exercise to their maximum during cardiac stress tests, they score worse the next day when they repeat the test. This is abnormal and has never been found in any other condition.

People with ME/CFS have an invisible disability. We need to listen and learn from their experience. The published evidence to date demonstrates that ME/CFS is a significant public health problem which is not being addressed.

Here is some more ugly. Because there are no physical signs and those afflicted look normal, they are still frequently disrespected, patronized by family and friends, and suffer discrimination. This discrimination can take many forms. Family and friends frequently cannot identify with how sick someone can become with these invisible conditions and are often intolerant of their complaints. People think they are lazy. Many medical professionals lack the knowledge and skill set necessary to treat them. Even more ugly is that they are often denied disability insurance benefits.

Here is more good. If you or or someone you care about has ME/CFS, you can download the 2012 ME/CFS Primer for Clinical Practitioners. It has been externally reviewed by a number of international ME/CFS specialists and advocates, and is supported by 121 citations from the medical literature. The 2014 edition has some small improvements and was just released at the conference in San Francisco. Highlights of the Primer include:

  • a summary of the pathological functioning and effects of ME/CFS
  • a user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • straightforward treatment suggestions covering an array of ME/CFS symptoms
  • emphasis on post-exertional malaise and activity management
  • sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy).

If necessary, give a copy to your health care practitioner. Or your lawyer.

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