Chronic fatigue syndrome (CFS) has been a mystery illness for far too long. The condition is also known as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID). Whatever you call it, this is one challenging condition. And until this week there has been no clear sense of how to test or diagnose ME/CFS. That may be about to change.
A New Study Sheds Light on Chronic Fatigue Syndrome:
Pro-inflammatory proteins in the blood are linked to chronic fatigue syndrome. This may be welcome news to the roughly one million people in the U.S. who suffer from ME/CFS. This condition is characterized by overwhelming exhaustion. Even a little physical or mental activity can set patients back for days. Rest does not relieve the flu-like symptoms.
Brain fog is another common complaint. Trying to concentrate, balance a checkbook or read a newspaper can be incredibly challenging. Other symptoms may include enlarged lymph nodes, muscle pain, joint discomfort, digestive tract distress, muscle pain and headache. Many people report sleep problems and can not get a decent night’s rest.
ME/CFS can manifest itself out of the blue, though many people report that it is preceded by an infection or a flu-like illness. They just never recover. Sometimes an accident seems to trigger the condition.
Doubting Doctors Need to Pay Attention:
Many health professionals have found chronic fatigue syndrome difficult to treat. That’s because there have been no clear causes and no definitive tests for the syndrome. As a result, some physicians perceive chronic fatigue syndrome more as a psychological condition than a clear-cut disease.
Many health professionals perceive patients with ME/CFS as complainers or whiners. That’s because their symptoms are nonspecific and hard to treat. The condition has been demeaned by the name “yuppie flu.”
But now a group of scientists at Stanford have discovered specific changes in 17 cytokines. These are molecules that the immune system uses for signaling.
A study found distinctive patterns of these cytokines among 192 people with chronic fatigue syndrome compared to blood levels of these compounds in 392 healthy individuals (PNAS, online July 31, 2017).
Several of the cytokines are linked to inflammation. The new test should help doctors make a diagnosis and may help drug companies develop a treatment.
Stories About Chronic Fatigue Syndrome:
Jill responded to an interview we conducted on our syndicated radio show:
“CFS is a more devastating illness than it is possible to conceive, even for me, after 21 years of ‘living’ with it.
“I had polio when I was 3, in 1955. As a small child, I dragged around on crutches with braces that weighed more than I did. When that got tedious, I learned to break my braces so I could use my manual wheelchair. When my shoulders, wrists, and arm muscles gave out from overuse, I switched to a power chair. A disability of this magnitude is not the biggest disaster that every happened, but it is inconvenient.
“I got CFS (sudden onset: went to bed fine, woke up sick) in 1987. CFS, unlike polio, stopped me dead in my tracks. It took my legal career, my most loved scuba diving hobby, even my ability to read. Without employment, I couldn’t afford to stay where I was. I lost my home, my friends, and my community.
“The misery of these losses did not begin to compare to the misery of the physical and cognitive pain and suffering this illness caused.
“If I were told I would have to be reborn for 1,000 more life times with either polio or with CFS, it would not take me 1/2 of 1 nanosecond to know that I would choose polio.”
HSF also responded to our interview:
“Thank you for bringing attention to this debilitating disease. My 23-year-old daughter has been struggling with this for two years and I have watched her life literally being slowly taken away from her. She can no longer work and has given up hope of every having any kind of normal life. There are so many facets to this disease and the more that people are aware, the more focus and attention it will bring to it. Thank you for devoting time on your show to this.”
Lila is not atypical:
“I am 73 and so tired I can barely get through a day! I get up and within half an hour I am ready to lie down again. My doctor says my blood work is OK.”
Perhaps the new research will allow physicians to test for cytokine abnormalities, in which case blood work may not be OK.
M.D. has a hard time showering:
“I have Chronic Fatigue Syndrome and fibromyalgia. Showers are exhausting, especially the thorough drying process. I have devised a way using multiple towels wrapped at various levels. I know I sound a little whacko. One around me, one wrapped around me below the breast. It is hard to convey the level of sheer exhaustion… often a shower must be geared up for and then an activity I must rest from.”
Christine has also had a hard time with chronic fatigue syndrome:
“I’ve suffered for two years after I was given steroid medication for 9 weeks. Once I stopped it, I developed the worst fatigue: seizing up of muscles, severe pain in my muscles, brain fog, dizziness, slurred speech, paralysis, breathing difficulties, and I couldn’t stand up due to severe dizziness.
“I have had six hospital visits and seen 40 different doctors and specialists. Many said things like ‘you’re just depressed,’ ‘you’re psychosomatic’ or ‘Oh, you have chronic fatigue syndrome, I can’t help you.’ They just plain rudely took my money and gave me nothing in return.”
Share your own ME/CFS story in the comment section below. Has anything helped you overcome this condition?