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Editor's Note: Ryan Prior is a CNN Cross-Platform Associate Producer. He was diagnosed with Chronic Fatigue Syndrome in 2007 and wrote about this experience here.
SAN FRANCISCO – Several times a day, every day, Ron Davis is sitting with his head bowed, waiting in front of his son's room for a subtle signal that it is good to enter.
He opens the door to the space where Whitney has spent most of the past decade.
Whitney is motionless on a single bed, her head shaved and the frame thin. He is fed by a tube directly into his stomach. His lips have not spoken a word for five years.
Davis, 77, runs a laboratory that has invented much of the technology behind the human genome project. Now, he and his wife spend most of their days caring for their 35-year-old son, who is immobilized with myalgic encephalomyelitis, or chronic fatigue syndrome (ME / CFS).
Sunday is the ME / SFC International Awareness Day. There is no cure. But Davis is currently leading a global campaign to root out the molecular basis of what is destroying Whitney and millions of other victims around the world so that scientists can better treat the disease.
What is ME / CFS?
Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) is a disabling and complex disease.
People with SE / SEF are often unable to do their usual activities. Sometimes ME / CFS can confine them to bed. People with EM / CFS are extremely tired and do not relieve themselves through rest. ME / CFS can get worse after any physical or mental activity. This symptom is known as Post-Stress Malaise (PEM). Other symptoms may include problems with sleep, thinking and concentration, pain and dizziness. People with EM / CFS may not seem sick. however,
- People with EM / CFS can no longer function the same way as before their illness.
- ME / CFS modifies people's ability to perform daily tasks, such as taking a shower or preparing a meal.
- ME / CFS often prevents to keep a job, go to school and participate in family and social life.
- EM / CFS can last for years and sometimes lead to severe disability.
- At least one in four ME / CFS patients are sentenced to bed or at home for long periods of time during their illness.
- Everyone can have ME / CFS. Although the disease is more common among people aged 40 to 60, this disease affects children, adolescents and adults of all ages. Among adults, women are more affected than men. Whites are diagnosed more than other races and ethnicities. But many people with ES / CFS have not been diagnosed, especially among minorities.
Source: CDC
Davis tells his wife, Janet Dafoe, that Whitney is ready. She enters and wipes the face of her son. She lifts the covers towards her head while he is motionless.
She lays a bag for intravenous infusion on a pole, which will flow water into the veins of her son.
Davis gets on his knees and takes off Whitney's socks. He cuts the nails of his son. He's washing his son's feet.
For the couple, it's a sacred moment.
Davis led a revolution in science
Davis and Dafoe will celebrate their 50th wedding anniversary in July. Decades ago, they would never have predicted their current situation.
Now, their daily lives are busy taking care of their son. At least one of them must be at home every day to attend Whitney.
"My wife and I can not go together," says Davis. They went to the beach every year, but it's been more than seven years since they last went. On a single income, they have financial difficulties.
"It has changed my life in so many ways. I decided to stop everything I was working on before Whitney became ill, "says Davis. "Everything is ME / CFS now. It's a kind of emergency effort.
Symptoms of EM / SFC
Primary symptoms
Also called "essential" symptoms, three main symptoms are necessary for diagnosis:
- Significantly reduced ability to do activities that were usual before illness. This decline in activity level occurs with fatigue and must last for six months or more. People with EM / CFS have a fatigue that is very different from fatigue. EME / CFS fatigue:
- Can be serious.
- It's not the result of an unusually difficult activity.
- It is not relieved by sleep or rest.
- It was not a problem before getting sick (not all life).
- Worsening of symptoms of ME / CFS after physical or mental activity that would not have caused a problem before the illness. This is known as Post-Stress Malaise (PEM). People with EM / CFS often describe this experience as an "accident", a "relapse" or a "collapse". During PEM, any symptoms of EMS / CFS may worsen or appear first, including difficulty thinking, trouble sleeping, sore throat, dizziness or extreme tiredness. It can take days, weeks or longer to recover from a crash. Sometimes patients may be tied at home or even completely in bed in an accident. People with ME / CFS may not be able to predict what will cause an accident or how long it will last. For example: Attending a school activity for a child can leave a person tied at home for a few days and not be able to do the necessary tasks, such as laundry.
- Shopping at the grocery store can cause a physical accident requiring a nap in the car before heading home or a call for a return home.
- Taking a shower can leave a person bedridden / stuck in bed and unable to do anything for days.
- Staying at work can lead to spending evenings and weekends recovering from stress.
- Sleep problems. People with EM / CFS may not feel better or less tired, even after a full night's sleep. Some people with ME / CFS may have difficulty falling asleep or staying asleep.
In addition to these basic symptoms, one of the following two symptoms is required for diagnosis:
- Problems of thought and memory. Most people with EM / CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say that they have a "brain fog" to describe this problem because they feel "stuck in the fog" and unable to think clearly.
Aggravation of symptoms while standing or sitting. This is what is called orthostatic intolerance. - People with EM / CFS may be dizzy, dizzy, weak or faint standing or sitting down. They may have vision changes like blur or see spots.
Source: CDC
The couple has a career in Stanford University and surrounding areas. Davis worked for decades in the school's biochemistry and genetics department, while Dafoe, who has just turned 70, is a child psychologist. She reduced her hours to about five hours a week to take care of her son.
After completing his Ph.D. at Caltech, Davis completed his post-doctorate at Harvard, where he studied with Nobel laureate Jim Watson the celebrity "Watson and Crick".
Davis joined Stanford's biochemistry department in 1972 as an associate professor and soon began to make himself known.
He co-authored an article that created a map with a new way of linking genes to the traits they caused, which has become the cornerstone of the field of genomics. This led Davis and his colleague to write a "proposal for a map of the human genome as a whole". The National Institutes of Health rejected them in 1979, claiming that their plan was too ambitious.
But Davis continued to innovate, eventually accumulating more than 30 patents for the technology he developed.
Finally, the world has caught up with his vision. The $ 3.8 billion human genome project was launched in 1990 and is based on Davis' gene sequencing technologies. Completed in 2003, he launched a revolution in science. The researchers realized that the Master Plan for Human Life gave biologists and physicians unimaginable power to diagnose, treat, and ultimately prevent the full range of human diseases.
Davis was selected by The Atlantic, the founder of SpaceX, Elon Musk and Amazon's founder, Jeff Bezos, as tomorrow's historians will consider today's greatest inventors.
The same wise mind that imagined the human genome project is now devoting days to what Davis calls "the last big disease to conquer".
He may need all his talent to save his son.
But then his son got sick and his priorities changed
Davis and Dafoe raised their two children in a quiet area of Palo Alto. Every year, they pack their backpacks with family in the mountains of California, California, and disappear for weeks.
"I took Whitney there when he was young," Davis says. On one of these trips, 5-year-old Whitney impressed her father by traveling 15 km in one day. During another trip to the Sierras, their little girl Ashley made her first steps at 5,000 feet altitude.
"I have not been gone for 10 years now," says Davis. "I'd like to do that with Whitney again."
In 2008, Whitney was 24 years old and lived in a small town in Nevada, going door-to-door for Sen. Barack Obama's presidential campaign.
But he often complained of being exhausted. An experienced photographer, Whitney captured images at Obama's inauguration in 2009, but even then, he could not work all day.
After years of declining health, many doctors without answers, Whitney finally received a diagnosis of ME / CFS.
While his health was deteriorating, he moved to his parents' home in May 2011. He tried to continue working as a wedding photographer, but quickly gave up this task because he needed a week to recover. from a single wedding. He quickly became bedridden.
In her latest article on her photography site, Whitney lamented that "chronic fatigue syndrome" can not do justice to her condition. He preferred "the complete stop of the body".
Whitney has lost the ability to speak, which is a very small fraction of EM / CFS patients. Dafoe says that he was communicating with the family via SMS, but this skill is now lost too, because even the glow of a smartphone screen is too stimulating for him. The emojis of the heart that he sent to his carers are nothing but memories.
Eventually, he could no longer eat solid foods.
In one of his last texts to his parents, he wrote: "I am sorry to have spoiled your golden years."
To seek treatment, Davis recruited a team of dream researchers
During a life spent at the frontiers of science, Davis has collaborated with many accomplished researchers. He is leveraging these relationships to build a world-class team and hopes to find the molecular basis for ME / CFS.
"I made phone calls and everyone I called said yes," says Davis.
Among the people who intercepted the phone were two Nobel laureates: Paul Berg, who won the chemistry prize in 1980, and Mario R. Capecchi, who won it in the "Physiology or Medicine" category in 2007 .
Some of his colleagues had never heard of the disease. He told them that it affected 1% of the population, about one in 300 Americans. He told them that the National Institutes of Health spent less than six million dollars a year looking for this disorder. .
This poses a challenge in treating an FDA-approved disease without treatment, which has no known cause or unique laboratory test that clinicians can diagnose. ME / CFS has lagged behind the biomedical imagination compared to cousins like multiple sclerosis, which also affects the immune system and the nervous system.
Following outbreaks in the 1980s, some people termed chronic fatigue syndrome as "yuppie influenza."
But its symptoms, which include constant exhaustion, pain, brain fog and restful sleep, can be as disabling as late-stage cancer. Taking a shower can leave a person bedridden / stuck in bed and unable to do anything for days.
In 2017, the NIH doubled its research spending on the disease to $ 12 million. But Davis says that compared to other diseases of similar gravity and prevalence, that's not enough. Multiple sclerosis, a disease that affects fewer patients than the ME / CFS, attracts more than $ 100 million a year in NIH-funded research.
Davis now regularly convenes top scientists through an advisory committee set up by the Open Medicine Foundation, a non-profit organization based in California, which raised $ 18 million for disease research. His center, Davis' Stanford Genome Technology Center, makes Davis a unique scientist by his ability to coordinate the discovery of a cure.
But to make the kind of progress that his colleagues and he is considering, they need a lot more money.
They progress slowly but regularly
Patients with EM / CFS, such as those with multiple sclerosis and other diseases, fall into a spectrum. Some are still able to go to the office and work, while others are bedridden 23 hours or more a day.
At research conferences, Davis occasionally sits and chats with patients with ME / CFS for hours.
"I'm very friendly with them," he says. "It makes me feel that I have to solve this problem, but not in an arrogant way. I just know that I have to put all his energy into helping all patients, including my son. "
Davis and Dafoe know that the weakened mind is alive in the weakened body of their son. Whitney is a Buddhist devotee and her house is littered with prayer flags. Dafoe thinks Whitney spends much of her day meditating.
When Whitney's younger sister, Ashley, got married, Dafoe pointed to the ring on her finger to offer her son the good news. The two brothers and sisters had been very close. Whitney did not speak, but held her hands to her heart and cried with joy.
In the Davis lab, Whitney's blood samples are among the many sequencing machines, which, according to his organization, is the most comprehensive study ever conducted on patients with ME / CFS.
This is not the first time that Davis has been interested in a problem that the scientific establishment deems unsolvable. "You have to look for these," he says.
He and his team have worked hard in recent years. One of their inventions, a "nanoneedle" for testing blood, highlights the need to find a single biomarker in patients' blood.
A blood test that identifies a specific molecular defect specific to patients with ME / CFS has long been a stumbling block in researchers' quest for better recognition of the disease. Having one could stimulate drug development because pharmaceutical companies would understand what is wrong with patients.
The Davis team tested their nanoguille with initial success and recently published their findings in a scientific journal. They discovered that the blood of patients with ME / CFS responds to the introduction of "stress" – in this case salt – differently from the blood of healthy people. Davis hopes the device will eventually produce an inexpensive clinical test allowing doctors to identify EM / CFS quickly and accurately.
He also wants to explore ways to prevent the disease. For example, he wants to understand why people with mononucleosis often develop EM / CFS.
These are just a few of the many things the Davis team is working on.
"We do not have enough money, so we need to set priorities," he says.
Davis went to Washington in early April for a symposium on EM / CFS. He hardly made the trip because his wife would stay home alone and take care of Whitney while she had the flu.
But she told him that he had to leave.
Taking care of Whitney is a daily ritual
Davis and Dafoe sometimes wait hours in front of Whitney's room, peering through a keyhole to see if he has taken a position in bed indicating that it is acceptable to enter. As words are no longer an option, they must interpret Whitney's postures and occasional hand signals.
Six times a day, every day, they perform this ritual, silently, conscientiously, away from the eyes of the world.
They begin around 2:30 pm, connecting Whitney's IV for the first time. When next entering her room, they connect the pump to the "J-tube" that sends the nutrients directly into the stomach of their son.
At the third visit, they wash and clean the small plastic containers next to Whitney's bed, which he uses as urinals. Then they come back to put the urinals on Whitney's stomach because he's ready to use them again. During their last visit, often around 2:30 am, they will put ice on Whitney's stomach to help soothe her excruciating digestive pain.
"I have the impression of living in a different world. It's hard to say anything when people ask, "How are you?" Says Dafoe. "Our world has just been consumed by a chronic disease."
There is a disciplined intentionality behind their movements. For Whitney, the slightest deviation in their procedure can be devastating.
"His cognitive processes are not working well," says Dafoe. She and her husband are wearing plain shirts without lettering when they are in Whitney's room, because the little energy it takes for his brain to process a word can make it crush. They even use tape to cover the labels of Neosporin tubes.
Whitney suffers from severe stomach pains, which prevent them from putting more food in her feeding tube.
Dafoe wants her husband to get enough sleep to stay cool and focused on finding the disease. That means she often helps Whitney until 5 or 6 o'clock.
At 5 pm she is back to take care of her son.
They hope that the suffering of their son can have a greater purpose
"I have a PhD. It was difficult, "says Dafoe. "I climbed mountains. It was hard.
But she says that supporting Whitney's disease is the most difficult thing she has done in her life, "by a factor of thousands".
A simple truth guides her. "It's my son. I just love it. "
Dafoe receives messages from ME / CFS patients around the world who say they are inspired by her husband and alarmed by the serious condition of her son. She says she feels like a mother to these people, many of whom are suicidal – a rational response to a life spent above death.
Many tell him that Whitney is their northern star. They say that if he can continue to live in hell year after year, their suffering must be bearable too.
"It saves lives," says Dafoe. "Just lying there."
Almost all communication between her and her husband with Whitney goes through pantomime gestures. If he wants more than something, he will hold his hands together and then separate them.
But from time to time, the fog dissipates a bit and Davis and Dafoe can speak out loud more complex ideas to Whitney. A few months ago, they told him how much his father had become a reference in the field of scientific research on his illness.
"He was really excited about that," says Dafoe.
Whitney hit the air like a boxer, indicating that he intends to fight.
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