NIH study still takes the deepest dive into the confining conditionBrian Vastag remembers when he was hit by the infection that changed his life.
"It started very suddenly - July 8, 2012, at 9:30 in the morning," he said. "It was almost like a change. It was a sudden fever and dizziness".
Five years later, Vastag participates in an intense experiment to determine if and how this infection may have disrupted his nervous system, leaving him a myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, or ME / CFS.
This is a study that will bring volunteers within the limits of medical science. Their cells will be used to make mice genetically engineered with human immune systems and their blood cells will be transformed into nerve cells using transformative technology that is still the subject of scientific journals.
Vastag spends two weeks at the National Institutes of Health outside Washington, DC, undergoing an intense battery of tests. It provides samples of blood, spinal fluid and urine. He takes adhesion tests and gets x-rays. He will be subjected to magnetic resonance imaging and a functional MRI to see what happens in his brain - there are also neurocognitive tests, Exercise tolerance, as well as autonomic nervous system tests, immune system and metabolic function.
Usually, medical studies examine a particular aspect of a disease. But this study overseen by Dr. Avindra Nath examines every conceivable aspect of a condition that many people do not yet believe is a real disease.
Nath and his team will transform the blood cells of their volunteers - transforming them into a primitive state called induced pluripotent stem cells (iPS cells), and then reorienting them to form nerve cells - to study as proxy for the brain And nerve cells that can not be eloquently removed from a living patient.
"I am very convinced by these patients, their complaints are very real," said Nath, clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS).
"But they have not received the attention they deserve because most of the tests show nothing."
Related: Chronic fatigue is real, New Brain Scans Show
Nath is not the only expert who is convinced. In 2015, a committee nominated by the Institute of Medicine (now renamed the National Academy of Medicine) said that the CFS needed a new name to move away from stigma, Be an imaginary illness.
"The committee recommends that this disorder be renamed" systemic effort intolerance disease "(SEID)," the panel of experts said. 836,000 and 2.5 million Americans have a disorder that falls within the definition.
The denomination recommendation did not get much resume, but Nath hopes to get to the bottom of at least part of the mystery. He recruited 40 ME / CFS patients plus 20 healthy patients, as well as 20 people who recovered from Lyme disease - an infection that can cause long-term symptoms that often overlap with SFC / ME.
Nath limited study to people who develop their symptoms after an infection and it tries to keep its volunteers the same as possible. It is possible that ME / CFS is not a single disease with only one cause, and believes that this may divert researchers.
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