“It’s like torture”: The tilt table test could be risky for many people with Long COVID

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In 2023, Naomi Harvey, a PhD researcher in the U.K. with myalgic encephalomyelitis (ME), was sent by her doctor to get a tilt table test (TTT). The National Health Service wanted to evaluate her for postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia, despite her already taking medications to treat the condition. She was strapped to a board that was mechanically elevated to about 60 degrees. 

“They said I could stop the test any time, just to ask, but to hold as long as I could,” Harvey told The Sick Times. After 15 minutes, the pain in her head and neck became unbearable: “Every cell in my body was screaming at me to lie down, but I couldn’t.” Finally, she demanded the clinicians stop. 

Harvey’s health worsened after the test and never improved. “From that day onwards, I was unable to sit up for more than one hour without developing a migraine, when before the test I could manage three [hours] without worsening.” She stopped being able to take day trips with her husband to a park. The TTT provided no new information to change her treatment. “It was just a tick box exercise.”

“The tilt table test is likely to be contraindicated in people with severe ME/CFS and related conditions,” Harvey said. Studies show about half of all Long COVID patients meet the diagnostic criteria for ME, a disease marked by debilitating post-exertional malaise (PEM).

Harvey is not alone. A dozen people with ME and Long COVID interviewed for this article shared stories of harmful TTT experiences, and many more have shared the same on social media. 

“Before the tilt test I was able to go down the stairs, watch TV, do some light work, like peeling potatoes,” Juul Tromp shared. Afterwards, they became “basically bedbound,” no longer able to sit upright.

While people with ME may intuitively understand the risks of, say, an exercise stress test, they may not realize that a simple elevation on board can have the same effect. 

The TTT is considered to be the “gold standard” for accurate diagnosis of POTS and related conditions, according to the advocacy group Dysautonomia International, but it is controversial among patients and providers alike. Long-time ME specialists generally recognize its potential to trigger serious PEM, but the medical field at large is often unaware or unconcerned.

Meanwhile, there are alternative diagnostic methods that are far less likely to provoke debilitating symptoms. There are debates around the various tests’ reliability as well as whether the diagnostic criteria for POTS are too strict when it comes to determining who should receive treatment.

POTS and the tilt table test

People with POTS, a form of orthostatic intolerance, experience abnormal heart rate increases when they sit up or stand, with corresponding dizziness, palpitations, and other symptoms. The diagnostic criteria require a 30 beats per minute (bpm) increase within ten minutes for adults, without a corresponding blood pressure drop. Studies find that up to 80% of people with Long COVID meet the criteria for POTS. 

Some people with POTS can manage their symptoms with lifestyle adjustments, like increasing salt and electrolytes. But they aren’t always sufficient, and medications may be needed for more serious cases. As such, many people with Long COVID who may have orthostatic intolerance are eager for a diagnosis, which they can get from a TTT. 

The TTT aims to recreate the conditions under which orthostatic intolerance occurs in a controlled setting. While there are variations in how the test is administered, most providers follow a similar protocol: patients are strapped down to a board or bed, face-up, while connected to monitors; patients rest flat for five to 20 minutes; the table then mechanically rotates upward, to about 60 to 70 degrees, for 10 to 45 minutes. Medications are sometimes added to stimulate heart rate if the results from the initial rotation are inconclusive.  

Most of the medical literature on the TTT refers to it as “safe and effective.” Yet, fainting — also called syncope, a temporary loss of consciousness caused by a decrease in blood flow to the brain — is a widely recognized possible outcome. In fact, provoking patients to faint or nearly faint is often cited as a goal of the exam, with the promise that they will recover quickly.

The TTT is theoretically designed to prevent any hazards from people fainting, as it has straps to keep patients in place. But for patients who are on the verge of passing out, this also means that they cannot brace themselves or sit down while their symptoms worsen. 

Kelly (who requested her last name not be used) shared a “traumatizing” TTT experience: “Within about two minutes, I began feeling irritable and dizzy. I suddenly realized I couldn’t shift the weight in my legs… I became nauseous.” She asked her technicians to stop the test after five minutes, but they insisted it had to continue until she fainted. Soon, she was vomiting and couldn’t see. Her blood pressure dropped to a critical level. 

After the test, Kelly was in and out of consciousness. “The next few weeks were devastating for my baseline,” she said. 

“It’s like torture,” said Dr. Linda van Campen, director of Stichting Cardiozorg, a clinic that treats ME in the Netherlands. She describes a catch-22 when it comes to people with ME, who suffer high rates of orthostatic intolerance but may not have a typical POTS presentation. “The longer you have them stand up, the more abnormalities you see, but the longer the post-exertion they will encounter.”  

The TTT is also known to cause arrhythmia or cardiac arrest. Jenny Loftus said she suffered a stopped heart, or “unshockable rhythm,” prompting a second test during which she was “much more closely monitored.” While it sounds like a terrifying outcome, articles often frame asystole, or cardiac arrest flat-lining, during a TTT as unproblematic. Doctors gain information about patient triggers and are able to restore heart functioning quickly through CPR or shocking the heart. 

Dr. Nancy Klimas, an ME expert who runs the Institute for Neuroimmune Medicine at Nova Southeastern University, has a different perspective. She once referred a patient to a TTT at a nearby hospital. The clinician overseeing the exam stepped out briefly just as the patient had a “scary arrhythmia.” As a result, the patient now has a pacemaker. Klimas no longer orders TTTs for patients.

Patients are further harmed when they undergo multiple PEM-inducing tests in a row. Emily Johnson recalled a week of misery at the Mayo Clinic, with back-to-back autonomic tests. Her “tortuous” TTT caused pain across her body, vertigo, and temporary vision and hearing loss. 

“Some of the symptoms set in later, which is why it’s important clinicians take long-term impacts into account and not just symptoms patients report during the test,” Johnson said. She and others also discussed how the test harmed their cervical spines, increasing ME symptoms and pain. 

Despite these reports, people who are prescribed the TTT generally struggle to get doctors to understand or care about the test’s risks. An underlying issue is a lack of ME literacy within the POTS and cardiology communities. 

For example, Dr. Qi Fu, a cardiologist at UT Southwestern Medical Center who uses a TTT in research on POTS, insisted that PEM is “deconditioning” and that “exercise training is always helpful,” a hypothesis that has been disproven by numerous studies. 

Some of the symptoms set in later, which is why it’s important clinicians take long-term impacts into account and not just symptoms patients report during the test.

Emily Johnson

Alternative tests

The Bateman Horne Center, a center that specializes in ME, Long COVID, and fibromyalgia, has proposed guidelines for using a 10-minute passive stand test instead of a TTT for diagnosing orthostatic intolerance. After resting flat, patients stand and lean against a wall for ten minutes, with only their shoulder blades touching the wall. The test is also known as the “NASA Lean Test,” since it was once used to study orthostatic intolerance in astronauts. 

In an interview, Dr. Lucinda Bateman described this protocol as both safer and more standardized than a TTT. In studies that followed up with patients days later, her team found that “patients recovered pretty well.”

Some specialists also prefer standing tests because they are accessible. POTS specialists and cardiologists tend to prefer a ten-minute active stand test, in which patients don’t lean against the wall. As the test more closely replicates real-world conditions, specialists debate whether it is more or less reliable in identifying dysautonomia than the TTT.

The American Heart Association recently issued recommendations that a “10-minute stand test” should be given to all people with Long COVID and should typically be “sufficient” to diagnose autonomic dysfunction. 

Another alternative is looking beyond heart rate and blood pressure. Van Campen’s team has found through research that people with more severe ME have reduced cerebral blood flow during a TTT and take significantly longer than other patients to recover after passing out. As cerebral blood flow results tend to show up quickly, her team keeps patients on the TTT for five minutes or less on average. “We try to cause us as little harm as we can,” she said. 

Harvey wishes the NHS had been measuring cerebral blood flow during her TTT. “How can we let seriously ill patients suffer a test that could be severely depriving their brains of oxygen without even checking for this?” she said.

There are evidence-based arguments in favor of and against each diagnostic method based on its reliability. A tilt table test is widely considered to produce the most sensitive results, but there are studies arguing otherwise. 

Amelia Solomon’s TTT caused her heart rate to rise 25 bpm, just below the 30 bpm threshold for POTS. “It’s a rigid test that has no exceptions and can have inconclusive results, leaving you nowhere,” she said. Solomon later got a POTS diagnosis through a standing test. 

There are many factors that can influence baseline and final heart rates, from the temperature of the room to the time of day to the physical stress of getting to the appointment. Some doctors prefer a 48-hour Holter monitor or even a smartwatch to paint a more holistic picture of heart rate changes over time.

Dr. Peter Rowe, who runs the pediatric ME clinic at Johns Hopkins, advocates for more “expansive criteria” for treating orthostatic intolerance than the POTS threshold. “I would submit that this [threshold] is a very rigid way of deciding which patients warrant treatment.” He cites evidence that people with ME often test negative for POTS on a TTT but are shown to suffer “substantial reductions” in cerebral blood flow. 

Bateman is concerned that many clinicians aren’t doing orthostatic testing “consistently and in a standardized way,” with a “supine resting period before starting” and at least ten minutes in an elevated position. Some patients recall their doctors measuring their heart rates immediately upon standing or setting the table upright at 90 degrees.

I would submit that this [threshold] is a very rigid way of deciding which patients warrant treatment.

Dr. Peter Rowe

What can patients do?

People concerned about a TTT can try educating clinicians on risks, but doctors aren’t famous for listening to patient expertise. A TTT may be necessary for documentation in some circumstances, including disability applications.

Rowe suggests that people ask for a saline infusion after the exam. When he uses a TTT — which he only does for research — he gives each patient a liter or two of saline to prevent PEM. “They often leave feeling better than when they came in after the IV fluids,” he said. 

Bateman suggests that patients who have a TTT mitigate PEM through preparation. “You don’t go when you’re in post-exertional malaise,” she said. “[You go] in your best stable state.” She recommends patients “hydrate like crazy” and remain “in recovery mode” for two or three days after the test. Bateman believes that people with ME can recover from a singular intensive activity if they don’t “compound” it with additional stressors. She refers to studies showing the one-day exercise stress test is not nearly as harmful to ME patients as the two-day test. 

People considering the test might also want to advocate for less stressful testing conditions, including spreading out autonomic tests with days of rest in between and lying down before and during appointments.

Ultimately, concerned patients might want to look for a specialist willing to diagnose and treat orthostatic intolerance without a TTT. 

According to Johnson, the TTT may be the “gold standard of tests” but it is inaccessible for many people with PEM or other related conditions. She advocates for clinicians to adopt standing tests as routine practice. “There is an order for certain testing and treatments that finds the best results and is safer for patients.”

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Justine Barron is a journalist and writer. Her work focuses on criminal justice, disability, and media criticism. She is the author of “They Killed Freddie Gray: The Anatomy of a Police Brutality Cover-Up” (Arcade).

Editor’s note, April 8, 1 PM ET: An earlier version of this article misspelled Juul Tromp’s name.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.

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