Chronic Fatigue Syndrome now seen as physical disorder

It seems that chronic fatigue syndrome (CFS) is finally getting the recognition it deserves as a physical –not psychological – disorder.

Up to 2.5 million Americans suffer from CFS, characterized by overwhelming fatigue that lasts 6 months or longer. The fatigue, which is not associated with any other medical condition, often gets worse after even the most minimal physical or mental exertion, and is not relieved by a full night’s sleep. Other troubling symptoms of CFS can include chronic muscle pain, headaches, frequent sore throats, dizziness, and problems thinking and concentrating.

Vero Beach neurologist S. James Shafer says “there is no specific test that leads to a CFS diagnosis. A doctor needs to connect the dots by looking at the constellation of symptoms and ruling out other conditions.”

An understanding of the data on CFS is also important; while it is not directly associated with any other condition, there are conditions that tend to co-exist in people with CFS, such as migraine headaches.

For decades, CFS was considered to be psychological in nature. Those diagnosed were told to get more sleep, exercise, eat better and undergo psychotherapy; their frustration and suffering only deepened when none of these things worked, or – in the case of exercise – made their condition worse.

“Unfortunately, there is still a stigma about CFS,” Dr. Shafer says. “Several decades ago, there was the same stigma about MS – it was thought to be a disorder imagined by melodramatic young women.”

In CFS, Dr. Shafer believes some combination of genetics and environmental factors causes an inflammatory response, resulting in the symptoms so familiar to sufferers. The environmental factors are currently unknown; Dr. Shafer says “it could be anything. And what triggers an inflammatory response could be different for each person.”

CFS is sometimes referred to as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Myalgic simply means muscle pain, but encephalomyelitis refers to an inflammation of the brain and spinal cord. Dr. Shafer prefers the term CFS to ME/CFS, saying “it’s a leap to say that the central nervous system is involved. We need a better understanding of CFS before we can say that.”

Although fewer and fewer medical professionals continue to view CFS as a psychological condition, those who still do may be swayed to revise their thinking by recent findings that the syndrome is often accompanied by immune system “disruptions,” such as chronically high levels of cytokines (substances secreted from the immune system) that can cause inflammation and pain, and poor functioning of the body’s infection-fighting white blood cells.

There are also factors that can precede the onset of CFS. One in 10 people diagnosed with the syndrome recently had a viral infection, such as Epstein-Barr or Ross River, which is carried by mosquitos or infected animals, or an infection called “Q fever,” caused by the bacterium Coxiella burnetii.

Additionally, researchers at Georgetown University Medical Center recently found there to be distinct changes in brain chemistry in CFS patients after they rode a stationary bike for 25 minutes; specifically the level of molecules (called miRNAs) that turn protein production on or off. Interestingly, this same change in brain chemistry was seen in those suffering from Gulf War Illness (GWI), which has many of the same characteristics as CFS.

Senior investigator and professor of medicine James N. Baraniuk, M.D., says the study lays the groundwork needed to understand these disorders in order to diagnosis and treat them effectively. He adds, “This news will be well received by patients who suffer from these disorders who are misdiagnosed and instead may be treated for depression or other mental disorders.”

The Georgetown findings were published in the journal Scientific Reports.

Alarmingly, it is believed about 90 percent of those suffering from CFS have not been diagnosed. As outlined on the Centers for Disease Control (CDC) website, the reasons include:

  • Most medical schools in the United States do not have CFS as part of their physician training.
  • The illness is often misunderstood and might not be taken seriously by some healthcare providers.
  • More education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.

As indicated by the Georgetown research, CFS can also be mistaken for other conditions, such as insomnia, sleep apnea, anemia, depression or anxiety.

While anyone can be affected by CFS, it is most common in people between the ages of 40 and 60. CFS is diagnosed far more often in women than men, in an approximate ratio of 4:1. This heavily-female prevalence is similar to other inflammatory conditions, such as lupus, multiple sclerosis and rheumatoid arthritis.

While CFS is not curable, it is manageable. In his practice, Dr. Shafer prescribes anti-inflammatory medication or medications used to treat fibromyalgia, such as Lyrica or Cymbalta. He may also suggest “neurostimulation,” a method of therapy that uses electrical stimulation to relieve chronic pain.

The CDC is currently formulating revised guidelines for managing CFS. Vero’s Dr. Shafer sees this as significant, saying “it will bring more attention to the disorder, paving the way for more research and funding than there is currently. It would be great if a clinical trial were conducted on treatment approaches for CFS.”

Dr. Shafer sees patients and conducts research at the Vero Beach Neurology and Research Institute, located at 1040 37th Place, Suite 201, in Vero Beach. The phone number is 772-492-7051.  

Comments

Liz_in_ATL January 24, 2018

Thank you, Maria Canfield for reporting this under-told story. As a long-term, homebound ME/CFS patient I appreciate your report. Dr. Shafer’s reluctance to use the term M.E. is familiar but frustrating. For one thing, imagine that you are totally healthy and then one day you come down with the flu and you simply never fully recover. You go from living independently to being forced to depend on others for your most basic needs. In short, your active life is gone. And the doctors tell you it is Chronic Fatigue Syndrome. The facts of the disease are a burden, but the name of the disease causes shame. It’s misleading and insulting. The United States is the only country that refers to the disease as CFS, everywhere else in the world it is Myalgic Encephalomyelitis, or ME. American patients are adopting the more accepted name in the hope that it will replace the insulting CFS. And while you are exactly right that modern medicine now believes it is a physical and not a psychological disease – that’s rather a low bar. Like Dr. Shafer said, it is a disease with a stigma. That is what needs to change. I disagree with you that CFS is “manageable.” Although some patients respond favorably to some medications, 75% of ME patients are unable to work and 25% of us are homebound. The recent documentary film, “Unrest” chronicles Jen Brea’s struggle with ME and her courageous efforts to get answers. “Unrest” is currently streaming on Netflix. For anyone with questions about ME, see the film.

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