Chronic fatigue syndrome (CFS) has been a mystery illness for far too long. This ailment was first identified in 1988, though the cause of the symptoms remains mysterious. For years, many health professionals considered it a psychosomatic disorder. The condition is also known as myalgic encephalomyelitis (ME). Some experts abbreviate it ME/CFS. Another name is systemic exertion intolerance disease (SEID). Whatever you call it, this is one challenging condition. Because there is no blood test or other objective way to measure this condition, its origins and outcomes remain controversial.
CDC Estimates Millions of Sufferers:
The Centers for Disease Control and Prevention (CDC) has just developed an estimate of how many Americans suffer from ME/CFS. The National Health Interview Survey queried 57,000 people representative of the American population. That sample yielded 1.3% who answered that they have been diagnosed with ME/CFS and that they still suffer from symptoms. Those include brain fog and pain as well as severe exhaustion.
Extrapolating from the survey suggests some 3.3 million adults may have the condition in the US. That figure probably includes people experiencing long COVID as well. The symptoms are quite similar. As a result, chronic fatigue syndrome is more common than health experts had realized. Poor people and those who live in rural areas appear to be especially vulnerable to this problem. ON the other hand, men and Hispanics appear to be slightly less likely to report it, whether that is because they are less susceptible or less likely to get a diagnosis.
CFS Compared to Long COVID:
Many of the symptoms of ME/CFS are similar to long COVID, aka PASC (Post-Acute Sequelae of SARS-CoV-2). Could long COVID be related to chronic fatigue syndrome? Will ME/CFS now get the respect and research attention it deserves?
What Is Chronic Fatigue Syndrome?
ME/CFS is characterized by 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.
Katty describes what it has been like for her:
“I began having severe fatigue about 8 years ago. Despite asking my doctor dozens of times to help me with this, I have lost many jobs, lost my home, lost my lifestyle, and have been a blink away from homeless several times. I can’t keep a job more than a few months because either I call off due to exhaustion or I can’t keep up with productivity.
“Finally, a doctor prescribed me stimulants. This hasn’t been without problems too, but at least I can work. I can’t do much else though. I work and sleep. I have had to give up gardening and any social life. My home is not as clean as I would like it and sometimes this has been very embarrassing. Worst of all….no one understands!!!!! I am thought of as weak and a family problem.”
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 ME/CFS more as a psychological condition than a clear-cut disease.
Some health professionals perceive patients with chronic fatigue syndrome 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.”
Long Haulers After COVID-19 Have Similarities to ME/CFS:
We hope that most physicians recognize that many of the symptoms of long COVID mirror the complaints of chronic fatigue syndrome. Although there are at least 200 different problems associated with Post-Acute Sequelae of SARS-CoV-2, some of the most common ones are very similar to ME/CFS.
- Extreme fatigue that persists
- Cognitive dysfunction, aka brain fog. Confusion is a classic symptom. People also complain about problems with thinking and memory.
- Post-exertional malaise. Even a little physical or mental effort can lead to physical and/or mental exhaustion.
- Pain is another common complaint of both ME/CFS and post COVID syndrome. People with myalgic encephalomyelitis complain of muscle and joint pain, headaches and sore throats.
- Shortness of breath is a classic symptom of long COVID. It also occurs with ME/CFS.
- Irregular heartbeats can occur with both conditions. See this article about the heart problems associated with long COVID. “Orthostatic intolerance” is linked to this, in that many people get dizzy or lightheaded if they stand suddenly. They may also have a rapid heart rate. Sometimes you will see it referred to as POTS.
- Insomnia or other sleeping problems are common to CFS and long COVID.
You can read more about ME/CFS from the CDC at this link.
The Point of This Exercise!
We are not trying to convince you that ME/CFS is caused by SARS-CoV-2. Instead, we’re just trying to convince you that chronic fatigue syndrome is real! In our opinion, the symptoms of long COVID and ME/CFS are similar enough that most doctors will begin to recognize that both conditions are not psychosomatic and almost assuredly related to a viral infection.
A Study Sheds Some Light on Chronic Fatigue Syndrome:
A group of scientists at Stanford have discovered specific changes in 17 cytokines associated with ME/CFS. These are molecules that the immune system uses for signaling.
Their 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 test should help doctors make a diagnosis and may help drug companies develop a treatment.
Several months ago we interviewed a virologist who claims to have identified the factors contributing to long COVID. Again, cytokines appear to be responsible. You can listen to that podcast at this link. The interview with Dr. Patterson is about two-thirds of the way through the show.
Pro-inflammatory proteins in the blood are linked to chronic fatigue syndrome. This may be welcome news to the roughly three million people in the U.S. who suffer from ME/CFS. They can now say that their condition is real and that health professionals need to treat it with the same respect they are giving to long haulers who are dealing with COVID-19.
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 ever 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?
May we ask for a small favor, please? Google doesn’t always point people in our direction. If you found this article of value, please share it with friends or family. You can do that by scrolling to the top of the article and clicking on the icons for email, Facebook or Twitter. While you are at it, please encourage your contacts to subscribe to our *free* newsletter by clicking on this link. Thank you for supporting our work.
