BETHESDA, Md. — Researchers hooked 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 Ault was pedaling for science.

Chronic fatigue syndrome is one of medicine’s most vexing mysteries. Now doctors at the National Institutes of Health are using volunteers like Ault for a unique study that pushes their limits in search of what’s 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 Ault, 36, of Paducah, Kentucky, as he began a nearly two-week stint at the research-only hospital outside the nation’s capital.

advertisement

“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’s 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 skeptical doctors. Decades after it was first recognized, scientists don’t 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 $14 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 enroll 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, Ault’s disease struck following a run-of-the-mill infection in 2017. He’d been training for a half-marathon but after a little time off to recover, he tried to resume his runs and couldn’t. 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 Anne Ault, his wife.

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.

Ault fit 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 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’s the energy drain. Just last month, Cornell University researchers reported that patients’ key immune cells don’t make energy properly.

The NIH study is looking for more clues. It starts with a week-plus hospitalization for blood and genetic tests, brain scans, a spinal tap, sleep tests, a check of gut bacteria. Scientists pore over the results before deciding who to invite back for a longer and more rigorous visit.

“Go as far as you can, work as hard as you can,” NIH physical therapist Bart Drinkard told Ault as he climbed onto the exercise bike.

Cells, in particular little factories inside cells called mitochondria, use oxygen and nutrients to create energy. While Ault pedals, scientists can measure how his leg muscles use oxygen, and see if that’s different than in a healthy person.

Afterward, doctors fit a special cap on Ault to track electrical activity in his brain, and then sent him to spend the night in an airtight chamber. Pipes draw out the room’s air for analysis. How much oxygen is used and carbon dioxide is produced tells how much energy Ault is using, minute by minute.

“We can calculate every molecule. It’s the cleanest air we have in the hospital,” said NIH’s Kong Chen, a metabolism specialist. “We’re figuring out how his body adjusts to an exercise load, or a stress load.”

Researchers are clear: The study doesn’t offer any treatments, although the hope is to find targets to eventually develop some. But Ault says it did help to learn about the disease and tricks to conserve his energy and pace himself “so I can try to stay as healthy as possible without such bad consequences.”

“It’s hard not knowing if I’m going to recover, if or when,” he said. Until research has an answer, he’ll “hope for the best but live for right now.”

— Lauran Neergaard

Leave a Comment

Please enter your name.
Please enter a comment.

  • I have always had stamina and energy to spend…until I was doing my master’s degree in my 60’s and my life just suddenly shifted. It began with what was diagnosed as PTSD with severe depression. I was put on disability and I managed to get my diploma, but was driving 200 miles a day round trip to finish a required internship. During this time, my bp was 254/163 at one point and then there were 4 ER visits while out of town. I planned to “rest up” after graduating, but it will soon be a year–a year of hell. I joined a gym–but was so exhausted! I never got past 15 minutes on the treadmill, could not build any muscle tissue, and still sleep about 16 hours a day (it was 20 a year ago). I have had some serious brain fog lately. I had so many hopes and dreams…working with abused women, starting a non-profit…all down the drain. There is no hope for medical help with Medi-Cal (called CenCal here). They don’t want to deal with me at all. But they do write a yearly prescription for bp meds. I turn 65 this year. I feel like I aged 15 years in 2. And I look and feel it.

  • Hallelujah. Serious research is finally being done on an illness that turns it’s sufferers into ghosts of their former selves. Most days we are pale, lackluster versions of who we once were. A low dose of Adderall has helped with my fatigue, mental fog, mood, and unexpectedly with my pain. I mentioned to my docs that I felt my pain lessened with the med and I asked them if they were aware of this benefit and they were not. Certain of my feelings, I did some research. I read that amphetamines were experimented with during WWII to treat pain in injured soldiers with some success. One has to be careful to avoid large doses which would cause really unpleasant, unsafe side effects and only take as prescribed by a doctor. Having to maneuver through three decades of this illness, I’ve formed some questions and opinions. I’ve come to believe that it runs in families. It does in mine. Also, my magnesium levels are often below normal in spite of a daily supplement. Magnesium is important to muscle function. When I am at my worst and so weak, just getting up to walk to the bathroom causes me to break into a soaking, cold sweat. Sometimes, I’m sure it’s associated with adrenal issues. Could the extreme anxiety of trauma, or prolonged physical or emotional anxiety deplete or heighten the production or effectiveness of certain hormones? Have we become hypersensitive to internal and external stimulus? So much so that our slightest reaction to it depletes us? It boggles my mind that I am always in some level of body wide pain and that the level of pain fluctuates with kind of physical and emotional stimulus I experience. Sometimes, a reaction is immediate, like when someone presses fingers onto my arm or leg. Sometimes, it’s delayed or cumulative, in a few hours to a day after doing a chore or experiencing stress. Conversely, I experience pain relief and energy boost when I’m exposed to very intense positive emotions, like when I’m with my young grandsons. At times I wonder if there could be a connection with surgeries. Perhaps, one of those organs we are told we don’t absolutely need, like tonsils, gallbladder or appendix, turns out to be more important than we thought. I think the best way to begin a study is to get as many sufferers as humanly possible to list their own experiences along with medical and personal histories. Then try to cross match and pin point similarities. We weren’t born feeling chronic fatigue or fibromyalgia. Something, along the way either caused it or flipped a genetic switch. Good luck researchers. My prayers are with you.

  • Fix the CFS/ME/mental disorder
    1. Detect the invisible pathogenic source
    2. Remove the invisible pathogenic source
    3. Tuning(reboot) the body’s major control systems.

  • After 3 generations in my family with post infectious (viral) chronic fatigue syndrome and subsequent autoimmune issues I believe one problem with finding causation is inadequate DNA analysis of genetic differences between CFS patients and control patients. The issue has to be autoimmune in origin. One relative almost died from GBS after a “cold”.
    Hopefully future gene editing technology will be able to address this condition in the future.
    Their still is no vaccine or cure (after 50 years!) for Epstein Bar virus, a common precursor of CFS that that could be prevented if a vaccine was available.

  • It is very simple to figure out the cause of this condition. It’s not the infections that cause the problem. It’s the After Effects of prescribed antibiotic treatment for the infection. All the symptoms are the same has fluoroquinolone poisoning caused by the use of this class of antibiotics. I know because I live it just as hundreds of thousands of others that have been poisoned

    • The hole in your simple theory is that most ME/CFS patients never received antibiotics for the initial infection. Many didn’t even have a single triggering infection.

      That said, given that some symptoms overlap, probably people with fluoroquinolone damage have been misdiagnosed with ME/CFS.

      There have been some fine minds trying to solve ME/CFS; not enough of them, but some very good scientists. If it was some simple, they would have figured it out before now.

  • This article was sent to me because I’m sure I have CFS. I’ve been struggling for about 1 1/2 years now. I have had blood tests, a stress test and more. My latest Bloodwork showed my ANA was 1:80. I haven’t heard back yet from my doctor, so I’m not sure what that means, if anything. I’m very “tired” of feeling this was. It was good to to learn this is finally being taken seriously.

    • I to have suffered from chronic fatigue. Fibromyalgia. Among a few other ailments degenerative diseases. I tried stem cell therapy. I can now walk, sit up for periods of time, ride in a vehicle. I actually am getting my quality of life back. I would highly recommend looking into stem cell therapy.

  • Im really interested in this Syndrome. My daughter ia suffering from similar symptoms and have no real answers. Cardiologist suspects POTS (Postural Orthostatic Tachycardia Syndrome)

    • Sylvia Roldan, POTS is often comorbid with ME/ME/CFS, especially in pediatric patients. Dr. Peter Rowe at Johns Hopkins has done research on this. He has given some symposiums on it which were available on YouTube.

  • Thank you for bringing attention to this little understood illness. I was diagnosed with this illness along with many of my classmates after a travel abroad program to mainland China during the summer of 1985. After an incredible and wonderful adventure many of us slog the sudden developed a flulike illness. My world suddenly changed forever, as do my symptoms and abilities.

  • “Researchers are clear: The study doesn’t offer any treatments”

    NIH is clear that it will be years before there are any results from this trial, and they will be very preliminary. It maybe decades before there are any effective treatments, due at least in part to decades of paltry research funding. They are also clear that “We have done what we can in terms of the resources”, according to NIH Director Collins. [1]

    NIH doesn’t have an ME research program, but it does have a tremendously effective ME public relations program, so it’s all good.

    [1] Transcript of Remarks on April 5, 2019 at “Accelerating Research in ME/CFS meeting”

Your daily dose of news in health and medicine

Privacy Policy