Page 28 - ARUBA TODAY

A28 SCIENCE
Friday 10 January 2020
Patients push limits for clues to chronic fatigue syndrome

By LAURAN NEERGAARD immune system seems to
AP Medical Writer be on chronic alert. Then
BETHESDA, Md. (AP) — Re- there's the energy drain.
searchers hooked Zach Just last month, Cornell
Ault to medical monitors as University researchers re-
he slowly climbed onto a ported that patients' key
gym bike. An invisible dis- immune cells don't make
ease is sidelining this once energy properly.
avid athlete and he knew The NIH study is looking for
the simple exercise would more clues. It starts with a
wipe him out -- but Ault was week-plus hospitalization
pedaling for science. for blood and genetic tests,
Chronic fatigue syndrome brain scans, a spinal tap,
is one of medicine's most sleep tests, a check of gut
vexing mysteries. Now doc- bacteria. Scientists pore
tors at the National Institutes over the results before de-
of Health are using volun- ciding who to invite back
teers like Ault for a unique for a longer and more rigor-
study that pushes their limits ous visit.
in search of what's stealing "Go as far as you can,
all their energy. work as hard as you can,"
"I've tried to exercise my NIH physical therapist Bart
way out of this multiple Drinkard told Ault as he
times and I've put myself climbed onto the exercise
in deeper pits every time," bike.
said Ault, 36, of Paducah, Cells, in particular little fac-
Kentucky, as he began a tories inside cells called
nearly two-week stint at mitochondria, use oxygen
the research-only hospital In this Nov. 18, 2019 image from video, Zach Ault of Paducah, Ky., is connected to medical moni- and nutrients to create
outside the nation's capital. tors during an exercise test at the National Institutes of Health's hospital in Bethesda, Md. energy. While Ault pedals,
"Chronic fatigue is kind of Associated Press scientists can measure how
like they took the stopper his leg muscles use oxygen,
out of the energy reserve predict who will recover registry where patients can going to allow him to push and see if that's different
tank," and no amount of and who will have a severe send in medical informa- through," said Anne Ault, his than in a healthy person.
sleep replenishes it, he said. case that leaves them de- tion and blood and saliva wife. Afterward, doctors fit a
Up to 2.5 million Americans bilitated, even bed-bound, samples to help scientists Ault, a father of three, was special cap on Ault to
are estimated to have for years. expand research. missing his kids' sporting track electrical activity in
what is known officially as "The ignorance about the And illustrating the desper- and school activities, even his brain, and then sent him
ME/CFS -- it stands for "my- condition just vastly dwarfs ation for answers, nearly his nightly wrestle with his to spend the night in an air-
algic encephalomyelitis/ what we know about it," 500 patients have called young son. He had to cut tight chamber. Pipes draw
chronic fatigue syndrome." said Dr. Walter Koroshetz, seeking to enroll in NIH's back his job, in the ministry, out the room's air for anal-
Its hallmark is profound fa- director of NIH's National In- own study that is putting a to half-days. When 16 hours ysis. How much oxygen is
tigue, lasting more than six stitute for Neurological Dis- few dozen under the mi- of sleep a day made no used and carbon dioxide
months, that's made even orders and Stroke, which is croscope, with a barrage difference, his wife, a phar- is produced tells how much
worse by any type of exer- leading the research. of sophisticated tests few macist, hunted research energy Ault is using, minute
tion. Among other symp- The NIH has more than hospitals can offer under opportunities. by minute.
toms, patients also tend to doubled funding -- to more one roof. Ault fit the bill for the NIH "We can calculate every
have difficulty staying up- than $14 million -- for scien- Like many such patients, study, which is focusing on molecule. It's the cleanest
right or cognitive trouble tists around the country to Ault's disease struck fol- people who came down air we have in the hospi-
often described as a "brain unravel the biology of ME/ lowing a run-of-the-mill in- with the disease after an tal," said NIH's Kong Chen,
fog." CFS since 2015, when the fection in 2017. He'd been infection, of any sort, within a metabolism specialist.
Many go undiagnosed, influential Institute of Medi- training for a half-marathon five years. That initial infec- "We're figuring out how his
misdiagnosed or dismissed cine decried "a paucity of but after a little time off to tion is long gone but may- body adjusts to an exercise
by skeptical doctors. De- research." recover, he tried to resume be, the body's normal re- load, or a stress load."
cades after it was first rec- Part of the trouble is that his runs and couldn't. His di- actions to illness went into Researchers are clear: The
ognized, scientists don't varied symptoms make it agnosis came after months a destructive tailspin. study doesn't offer any
know what causes it. There hard to compare patients. of tests for other explana- "You're really capturing the treatments, although the
are no approved treat- A patient advocacy group tions. disease at a specific point hope is to find targets to
ments, or even tests to help called Solve ME/CFS Initia- "His body had literally hi- in time," in its crucial early eventually develop some.
diagnosis -- and no way to tive is preparing to open a jacked him and it wasn't stages, said Sadie Whit- But Ault says it did help to
taker, scientific director for learn about the disease
the Solve ME/CFS Initiative. and tricks to conserve his
"No one has studied such a energy and pace him-
very specific population to self "so I can try to stay as
such depth before." healthy as possible without
There are some clues. Earli- such bad consequences."
er studies have found brain "It's hard not knowing if
inflammation in patients, I'm going to recover, if or
and nervous system abnor- when," he said. Until re-
malities that might explain search has an answer, he'll
why they feel worse up- "hope for the best but live
right than lying down. The for right now."q