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US study pushes limits of patients for clues to chronic fatigue syndrome

BETHESDA, Maryland (AP) – Researchers hooked Mr Zach Ault to medical monitors as he slowly climbed onto a gym bike. An invisible disease is sidelining this once avid athlete and he knew the simple exercise would wipe him out – but Mr Ault was pedalling for science.

Chronic fatigue syndrome is one of medicine's most vexing mysteries. Now doctors at the National Institutes of Health (NIH) in the United States are using volunteers like Mr Ault for a unique study that pushes their limits in search of what is stealing all their energy.

"I've tried to exercise my way out of this multiple times and I've put myself in deeper pits every time," said Mr Ault, 36, of Paducah, Kentucky, as he began a nearly two-week stint at the research-only hospital outside Washington, D.C.

"Chronic fatigue is kind of like they took the stopper out of the energy reserve tank," and no amount of sleep replenishes it, he said.

Up to 2.5 million Americans are estimated to have what is known officially as ME/CFS – it stands for "myalgic encephalomyelitis/chronic fatigue syndrome." Its hallmark is profound fatigue, lasting more than six months, that is made even worse by any type of exertion. Among other symptoms, patients also tend to have difficulty staying upright or cognitive trouble often described as a "brain fog." Many go undiagnosed, misdiagnosed or dismissed by sceptical doctors.

Decades after it was first recognised, scientists do not know what causes it. There are no approved treatments, or even tests to help diagnosis – and no way to predict who will recover and who will have a severe case that leaves them debilitated, even bed-bound, for years.

"The ignorance about the condition just vastly dwarfs what we know about it," said Dr Walter Koroshetz, director of NIH's National Institute for Neurological Disorders and Stroke, which is leading the research.

The NIH has more than doubled funding – to more than US$14 million (S$18.8 million) – for scientists around the country to unravel the biology of ME/CFS since 2015, when the influential Institute of Medicine decried "a paucity of research."

Part of the trouble is that varied symptoms make it hard to compare patients. A patient advocacy group called Solve ME/CFS Initiative is preparing to open a registry where patients can send in medical information and blood and saliva samples to help scientists expand research.

And illustrating the desperation for answers, nearly 500 patients have called seeking to enrol in NIH's own study that is putting a few dozen under the microscope, with a barrage of sophisticated tests few hospitals can offer under one roof.

Like many such patients, Mr Ault's disease struck following a run-of-the-mill infection in 2017. He had been training for a half-marathon but after a little time off to recover, he tried to resume his runs and could not. His diagnosis came after months of tests for other explanations.

"His body had literally hijacked him and it wasn't going to allow him to push through," said Mrs Anne Ault, his wife.

Mr Ault, a father of three, was missing his kids' sporting and school activities, even his nightly wrestle with his young son. He had to cut back his job, in the ministry, to half-days. When 16 hours of sleep a day made no difference, his wife, a pharmacist, hunted research opportunities.

Mr Ault fits the bill for the NIH study, which is focusing on people who came down with the disease after an infection, of any sort, within five years. That initial infection is long gone but maybe, the body's normal reactions to illness went into a destructive tailspin.

"You're really capturing the disease at a specific point in time," in its crucial early stages, said Dr Sadie Whittaker, scientific director for the Solve ME/CFS Initiative. "No one has studied such a very specific population to such depth before."

There are some clues. Earlier studies have found brain inflammation in patients, and nervous system abnormalities that might explain why they feel worse upright than lying down. The immune system seems to be on chronic alert. Then there is the energy drain. Just last month, Cornell University researchers reported that patients' key immune cells do not make enRead More – Source