“It’s all in your head.”
“You’re just being lazy.”
For the hundreds of thousands of people who suffer from Chronic Fatigue Syndrome (CFS), those are words they hear every day from their family friends, and many physicians. But for these people—of whom are labeled hypochondriacs—there may finally be some hope.
Using a blood test he is developing, Robert J. Suhadolnik, Ph.D., hopes to provide evidence of the presence—or absence—of an enzyme that reacts to the presence of CFS.
“For years, people with CFS have been ridiculed and told their symptoms are all in their heads,” says Suhadolnik, a professor of biochemistry and molecular biology at Temple’s School of Medicine. “We believe this isn’t true.”
Instead, Suhadolnik believe the cause of CFS may be an undetected virus or viruses located in the central nervous system. Suhadolnik is examining the blood of CFS patients for evidence of these viruses.
It’s All In Your Head
Despite the fact that CFS is an extremely debilitating disease and almost everyone has heard of it, there are still people who don’t believe it exists.
“Historically people condemn what they don’t understand,” says Suhadolnik. Suhadolnik says that CFS was unfairly named the “yuppie flu,” because it seemed to affect primarily young, white professionals. Its now known, however, that CFS is not a discriminating disease—it affects all ages and all races.
H. James Day, M.D., a professor of medicine at Temple’s School of Medicine and chief of hematology at Abington Memorial Hospital, is also interested in the diagnosis and treatment of CFS. Day says the symptoms of CFS vary but typically include extreme tiredness, inability to concentrate, poor memory, weakness, swollen lymph glands, sleeping difficulty, depression, muscle weakness, and joint pain.
“With a mild case, tiredness and difficulty concentrating may be the only symptoms,” he says. “With a severe case, a patient may not even be able to get out of bed.”
Day says another characteristic of CFS is that the fatigue is out of character for those who contract it. It may also happen suddenly, so there is a marked difference in how patients feel before the onset of illness and how they feel after it.
“It’s not uncommon for CFS patients to have their activity level curtailed by up to 50%,” he says. “It can devastate a person’s life.”
Day cites one patient, a woman in her thirties, who had always been exceedingly active. She got up at 5 a.m., put in a 10 to 12 hour workday as a pharmaceutical sales representative, and took care of her one-year-old at home.
As she began to feel the symptoms of CFS, she spent months suffering from exhaustion, memory loss, back pain, headaches, and clumsiness. She even got lost on her way to a doctor she had visited for years. As the illness progressed, she was forced to go to bed at 8 p.m. and take three-and-a half-hour naps every day. Her work and personal life were lost to her illness.
Currently, Suhadolnik is receiving blood samples from two physicians in Nevada and North Carolina who are experts in the diagnosis of CFS. The samples are from patients who have been diagnosed with CFS.
Using the clinical samples from Drs. Daniel L. Peterson and Paul R. Cheney, Suhadolnik will measure the protein levels and activity of various enzymes in the antiviral defense system from patients with CFS and compare them to healthy control subjects.
Suhadolnik hopes to answer the question: What is happening in the bodies of people with CFS?
“In most cases, the human body is able to resist viral infection thanks to a cascade of biochemical events triggered in the body’s immune system,” says Suhadolnik. “If these antiviral defense pathways are functioning correctly, the spread of the virus is prevented.”
The theory Suhadolnik is testing is that, in people with CFS, the antiviral defense pathways are not working properly. Instead of being helpful and fighting viruses, the antiviral pathways appear to be overly active.
“When this happens, the effect on the body is destructive,” says Suhadolnik. “Many of the symptoms CFS patients experience may be the result of this overreaction that follows a viral infection.”
The evidence that Suhadolnik and his collaborators have supports this theory. In studies published in two leading medical journals, key components of the antiviral pathways have been measured in blood samples obtained from CFS patients. The CFS patients who were severely disabled by their disease. They also had antiviral defense pathways that were significantly more active than normal.
Suhadolnik’s work was acknowledged in November at the First World Congress on Chronic Fatigue Syndrome. During his keynote address, Anthony Komaroff, M.D., professor at Harvard Medical School, singled out Suhadolnik’s work as “the most impressive evidence for viral involvement in Chronic Fatigue Syndrome.”
His research is also being supported by a research grant from The Chronic Fatigue and Immune Dysfunctions (CFIDS) Association of America.
“If Suhadolnik’s blood test turns out to be reliable, it could be the first step toward finding a treatment program for people who have CFS. Collecting disability payment may be also much easier for CFS patients since both insurers and Social Security demand evidence.”
In September, researchers from John Hopkins University published a study that links Chronic Fatigue Syndrome (CFS) to a common abnormality in the way the body regulates blood pressure. The researchers said that some patients with CFS respond to treatment entailing increased salt and fluid intake in combination with drugs to regulate blood pressure.
While this study is promising, Suhadolnik and others still believe a virus is behind the cause of CFS. It’s an opinion of Hugh Calkins, M.D., the senior author of the Hopkins study, seems to agree with.
In a New York Times article about the study, Calkins is quoted as saying that it is a “strong possibility that a virus infection or some other unidentified event sets off Chronic Fatigue Syndrome, since so many people date an abrupt onset of the syndrome to a viral infection.”
Marc M. Iverson, president and founder of the CFIDS Association of America, has described the search for the cause of CFS as looking at “footprints in the sand.” Researchers can see the clinical footprints (the symptoms of CFS) but haven’t yet been able to identify what is making the footprints.
If Suhadolnik’s blood test turns out to be reliable, it could be the first step toward finding a treatment program for people who have CFS. Collecting disability payment may also be much easier for CFS patients since both insurers and Social Security demand evidence.
“Right now I can only diagnose CFS based on the symptoms, because there is no test that provides objective evidence of that disease,” says Day. “This test will provide.”
For the thousands of people who suffer the stigmatizing experience of being told the symptoms are “all in your head,” that evidence can’t come soon enough.
Reprinted with permission from Connection: Temple University Health Sciences Center, Winter 1996