LOS ANGELES - A Stanford University professor known for his research in genetics and biochemistry was forced to change his focus when his son fell ill with a chronic fatigue syndrome that has been identified in COVID-19 patients and "COVID long haulers."
The National Institutes of Health identifies "COVID long haulers" as a "large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness."
The chronic fatigue syndrome Ron Davis’ son suffers from is a relatively common — albeit little understood — illness.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness that has been found in patients who have recovered from the novel coronavirus and other viral infections like SARS.
Davis is a professor of biochemistry and genetics at Stanford University and the director of the Stanford Genome Technology Center. He’s set up a research group to study ME/CFS ever since his son fell ill with the condition roughly 10 years ago.
The CDC cites a 2015 report from the nation’s top medical advisory body, the Institute of Medicine, which says that an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.
Davis estimates nearly 1 percent of Americans have the condition.
His son, Whitney, 37, fell ill with the disease roughly 10 years ago, although it’s not clear exactly how he contracted it.
Davis said his son was an active photographer who loved to travel the world. Years ago, Whitney was helping locals in a village in India build a nunnery before he got sick.
Since contracting ME/CFS, Whitney has been bedridden, unable to speak, fed through tubes, and reliant on an IV drip for hydration.
"He has the worst of it in terms of the illness’ severity," Davis says.
The CDC says that people with ME/CFS experience severe fatigue and sleep problems, as well as difficulty with thinking and concentrating while experiencing pain and dizziness. People with ME/CFS can be overwhelmed by extreme fatigue and are sometimes confined to their beds, the health agency explains.
Any sort of activity, physical or mental, can also possibly exacerbate ME/CFS symptoms, causing a particular ailment known as post-exertional malaise (PEM). A person who suffers from PEM as a result of having ME/CFS could experience symptoms for six months or longer, according to the CDC.
In Whitney’s case, any sort of physical activity — even using his brain — costs energy that can cause him to crash.
Davis said he and his son’s caretaker need to wear black when in the same room with Whitney in order to avoid forcing him to use any brainpower to interpret colors.
After nearly a decade of treatment, Whitney has been able to get better through experimental means and by simply taking it easy. He can communicate using simple tools, giving "yes" or "no" answers. Davis said his son can now use an iPhone or iPad to communicate. "It doesn’t stress him out like it used to," Davis said.
Davis, who has received an array of awards for his previous research on genetics and biochemistry, was not intending to study ME/CFS, but once his son fell ill, he looked into what was being done about it and was disappointed.
"I looked into what was being done and if there’s a bunch of really good researchers with a bunch of funding I don’t need to do it, but there aren't a lot of good researchers, there’s a few and none of us have sufficient funding to do a decent job," Davis said.
One researcher studying ME/CFS that Davis noted is Dr. Mady Hornig, an immunologist and professor of epidemiology at Columbia University.
Hornig had been studying the long-term effects of a viral infection like COVID-19 when she was confronted with an array of her own concerning symptoms that persisted for weeks. She first came down with COVID-19 symptoms last year which continued to impact her daily life for several months.
Hornig said SARS-CoV-1 and MERS have been associated with longer-term difficulties in which many people appear to have symptoms of ME/CFS.
Last April, advocates of the Solve ME/CFS Initiative (Solve M.E.) held a virtual event for fourth annual ME/CFS Advocacy day, which the organization calls a "national event to educate Congress about the neuroimmune disease."
According to the organization, "Some COVID-19 patients are exhibiting Me/CFS-like symptoms* *(nearly 35% of patients). The illness typically follows a viral infection, according to the Solve ME/CFS Initiative.
"ME/CFS is an urgent public health crisis based on what is happening in our country right now," says Emily Taylor, director of advocacy and community relations at Solve M.E. "Evidence suggests that a virus as serious and widespread as COVID-19 could ignite rapid and significant growth in the ME/CFS population in just 36 months This is a very real, science-based concern, adding an even stronger sense of urgency to take action today. We must get the attention of our country’s leaders."
Despite the prevalence of the disease, Davis said there isn’t enough being done to research it. His work to treat his son is currently funded by donations after he had several grants turned down. He and other researchers have worked to develop a home-built diagnostic tool, which his colleague is applying for grants to mass-produce.
But after years of research, one of the most significant tools for his son has been a medication typically used to treat patients with schizophrenia called Abilify (Aripiprazole).Abilify is an anti-psychotic that is FDA approved for schizophrenia, but a recent study by one of Davis’ colleagues, Dr. Hector Bonilla, found promising results in treating ME/CFS.
Although Davis stressed that the use of Abilify for ME/CFS is still experimental, he said his son showed significant improvement after taking the medication. Davis said after taking Abilify, his son was recently able to take a hot bath for the first time in years, allowing a nurse to run warm water over his head, something that would have previously forced Whitney to crash easily.
"When he got feeling a little better he wanted to have his head washed and he hasn’t had any water on his body for six years," Davis explained. "So he got on all fours and stuck his head under the shower which is no more than 10 feet from his bed, and she [Whitney’s caretaker] washed his head and that was the first time he had water on his body for six years and he just sat down on the floor after that and just laughed. ‘It felt so good,’ he said."
Still unable to speak, Whitney uses a form of sign language to communicate with his family. "In the past, he [Whitney] was not able to look at a letter or a number," Davis said.
Davis is still researching what causes ME/CFS and is still continuing to apply for grants to help fund his research, but said he remains grossly understaffed and underfunded. He explained that his son originally wanted to participate in the research when he heard so many who suffer from ME/CFS were committing suicide.
Davis hopes his research can unlock mysteries surrounding the disease and why it’s becoming more and more common in COVID-19 patients.
According to a June 2020 letter published in the peer-reviewed journal Medical Hypotheses, researchers identified several cases of patients who have recovered from COVID-19 and developed ME/CFS.
One doctor who authored the letter described the case of a 42-year-old male patient who recovered from COVID-19 on April 15, 2020. The patient reached out to doctors again after experiencing ME/CFS-like symptoms, including extreme fatigue and insomnia. The patient had no preexisting conditions prior to contracting COVID-19, leading experts to believe the cause of his ME/CFS was the novel coronavirus.
"It may be that early intervention and supportive treatments at the end of the acute phase of COVID-19 can help overcome acute phase symptoms and prevent them in becoming longer-term consequences," the experts said in the letter. "Without this, in a contracted future economy (at least in the short to intermediate term), managing these likely Post COVID-19 syndrome cases, in addition to existing CFS/ME cases will place additional burden on our already hard pressed healthcare system."
The authors of the letter suggested further study needs to be done to help prevent recovered COVID-19 patients from developing the condition.
Davis says one of the biggest problems his son experienced early on in his illness was feeling discredited by medical professionals who were left scratching their heads over the condition and how Whitney came to fall ill with it.
Whitney wasn’t formally diagnosed until several years after initially developing ME/CFS symptoms. Davis said many who suffer from the disease but haven’t been properly diagnosed are told that they might suffer from a psychosomatic illness, something that is caused or aggravated by a mental factor. Davis said some, including his son, have been told that the illness is in their heads.
Davis said the worst advice for COVID-19 patients suffering from ME/CFS or any form of chronic fatigue is to continue to push themselves. He explained that based on his research, he has found that ME/CFS is not a mental illness, but rather something that happens biochemically in which the body’s immune system is switched into an altered state that remains stable, yet debilitating. This causes people to experience an array of life-altering symptoms.
Davis said he has heard many who suffer from ME/CFS have been told they need to continue to get as much exercise as possible in order to push through their illness.
"Don’t exceed your energy envelope, otherwise don’t push yourself too much. You could get worse. You can crash and be incapacitated," Davis said. "Some ME/CFS patients will push themselves because they’re so desperate to do something."
He said there are drugs and treatments that ME/CFS patients can look into to treat individual symptoms related to the illness. The CDC says (https://www.cdc.gov/me-cfs/treatment/index.html)there is no cure or approved treatment for the disease, although some treatments might provide relief for some patients.
This story was Reported from Los Angeles. Catherine Park contributed.