How Medicine Keeps Failing the Fatigued: CFS, Long COVID and Long Vax

We became interested in chronic fatigue syndrome, abbreviated CFS, in the 1980s. That was when Paul Cheney, MD, PhD, reported an outbreak of post-infection symptoms following a particularly bad flu season. He was practicing medicine at Incline Village near Lake Tahoe, Nevada. We had the honor of interviewing Dr. Cheney on The People’s Pharmacy public radio show in 1988. He told us that a cluster of patients was suffering debilitating fatigue that would not go away after they had experienced an upper respiratory tract infection. That was the first time that CFS had been reported by a medical professional.

Dr. Cheney described patients who had been in great shape but could no longer exercise. They were overwhelmed by severe, ongoing exhaustion. The smallest exertion could wipe people out for days. Dr. Cheney found that patients with this disorder also suffered muscle pain, sleep difficulties, brain fog and immune system dysfunction.

CFS Was the Canary in the Coal Mine:

For many years mainstream medicine dismissed patients with chronic fatigue syndrome. They were characterized as suffering from psychosomatic problems. Some health professionals even applied the derogatory phrase “yuppie flu.”

Eventually, though, medicine accepted that many patients were indeed suffering from a real physiological health problem. The CDC now calls it ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). The agency notes that it makes it hard for patients to carry out their usual activities. It has no known cause or cure.

Here is how the CDC officially describes this condition:

• “Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, life-altering disease affecting many organ systems. It goes well beyond ‘being tired’ and profoundly impacts patients’ quality of life and abilities. Patients frequently experience a substantial impairment in physical and mental function at some point in their illness. It’s estimated that as many as 3.3 million people in the United States have ME/CFS. The vast majority are undiagnosed.”

When Dr. Cheney spoke with us all those years ago, he told us that he suspected a pathogen was responsible for the onset of symptoms. So far, though, researchers have not identified a particular virus or bacterium that is associated with ME/CFS.

In our opinion, modern medicine has failed the millions of patients suffering from this mysterious and debilitating condition. For reasons that we do not understand, the National Institutes of Health (NIH) never seemed to make it a high priority. Researchers did not get rewarded professionally or financially for studying chronic fatigue syndrome. Many of Dr. Cheney’s medical colleagues did not support his efforts to treat patients or educate the public.

Same Suffering, New Name–The CFS Crisis No One Fixed:

Although doctors still do not know what causes CFS, there is now a large group of people who know the exact pathogen that triggered their problems, which resemble those of chronic fatigue closely. They call their condition “long COVID.”

Because so many people are suffering following an infection with the SARS-CoV-2 virus, it cannot be ignored. Doctors have come up with a number of medical terms: PCC (Post-COVID Conditions) and PASC (post -acute sequelae of COVID-19).

One team of researchers has concluded that 14 percent of Americans have experienced long COVID at some point (PLoS One, Nov. 2, 2023). In April of 2024, KFF estimated that 17 million people were suffering from long COVID.

“Statistics Are People with the Tears Wiped Away:”

One of our heroes was Dr. Irving Selikoff. He helped establish the link between breathing in asbestos and developing a variety of horrific lung conditions. Dr. Selikoff was one of the great advocates for environmental and occupational health. He is credited with coining the phrase, “Statistics are people with the tears wiped away.”

This phrase also applies to people who have been touched by CFS, long COVID or long Vax. Statistics cannot not convey what such conditions are like.

One reader described his experience:

“I don’t know if my condition is long COVID or long vax. My symptoms are very debilitating fatigue, weakness, poor stamina, chills, muscle stiffness, low appetite and weight loss. Completely contrary to my usual personality, I became very depressed, angry, short on patience and have even had fits of rage.”

His mention of long vax is appropriate. Research on what medicine calls post-vaccination syndrome underscores how similar the symptoms can be to long COVID. When we read that some people report exercise intolerance, lasting and overwhelming fatigue, insomnia, brain fog, palpitations and tinnitus after getting immunized from COVID-19, the similarities struck us (MedRxiv, Feb. 18, 2025).

Yale researchers have found evidence that the vaccine may sometimes reactivate herpes viruses, including Epstein-Barr, the virus that causes mono. This reminds us that many viruses can lie dormant in the body for years or even decades. A new infection might revitalize them.

CFS Compared to Long COVID:

Many of the symptoms of ME/CFS are similar to long COVID. 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?

As mentioned, 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 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 still perceive ME/CFS more as a psychological condition than a clear-cut disease.

Some health professionals react to patients with chronic fatigue syndrome as complainers or whiners. That’s because their symptoms are nonspecific and hard to treat.

Long Haulers After COVID-19 Have Similarities to ME/CFS:

We hope that most physicians recognize that many of the symptoms of long COVID or long vax 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.

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, long vax and ME/CFS are similar enough that most doctors will begin to recognize that such conditions are not psychosomatic and almost assuredly related to a viral infection or the sequelae of the COVID vaccine.

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 years 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.

MD 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? What about long COVID or long vax? Has anything worked? Please describe your situation so other people, including health care professionals, will comprehend what you have been going through.

It is sad to learn that research funds are being cut just as millions of Americans are suffering from a disease that remains so mysterious. We can only hope that at some point investigators will figure out a treatment that could ease the incapacitating symptoms of long COVID, long vax and ME/CFS.

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