The 14th annual Dysautonomia International conference outside Houston included presentations on the role of autoimmunity in dysautonomia and a biobank initiative for POTS research.
Key points you should know:
- Over 400 clinicians, researchers, and people with dysautonomia gathered in person in The Woodlands, Texas, with an additional 1,000 joining virtually for over 50 sessions. The conference was organized by the advocacy group Dysautonomia International.
- Some of the conference themes included the growing evidence that dysautonomia is an inflammatory and autoimmune condition and the role of mast cell dysfunction in driving symptoms.
- Dysautonomia International is launching a biobank initiative, called POTS BRAIN, to help facilitate POTS research. Their first study will be looking at markers for iron storage and inflammation. They are hoping to eventually recruit remote participants.
- Multiple sessions discussed myalgic encephalomyelitis (ME) as a common comorbidity, and offered advice on how to recognize and mitigate the challenges of post-exertional malaise (PEM).
Earlier this month, a group of 400 clinicians, researchers, and people with dysautonomia and related conditions gathered in The Woodlands, Texas, for the 2026 Dysautonomia International conference, with an additional 1,000 participants signed up for the livestream option. With a threefold mission of advocacy, awareness, and advancement, the 14th annual conference included over 50 sessions, patient support groups, and a full-day course that offered continuing medical education credits for healthcare professionals.
The conference organizers focused on providing up-to-date information on what causes dysautonomia and how to treat it. This included presentations on the underlying pathophysiology of the disease, best practices for treating it with medication, and rehabilitation strategies for physical and occupational therapists.
Some of the conference themes included the growing evidence that dysautonomia is an inflammatory and autoimmune condition; the role of mast cell dysfunction in driving symptoms; strategies for treating people who have both postural orthostatic tachycardia syndrome (POTS) and myalgic encephalomyelitis (ME); and a new biobank initiative to facilitate research.
Conference organizers also sought to include more information about ME and the effects of post-exertional malaise (PEM). In spite of this, a number of POTS experts still repeated the advice that exercise is the best medicine, without mentioning the risks of graded exercise therapy for people who also have ME.
The conference encouraged masking, but did not require it. Corsi–Rosenthal boxes were placed in all common areas and conference rooms. For participants who could not attend in person, there were livestreams of some of the sessions, while the majority of sessions were recorded and will be made available to participants within a month after the end of the conference.
Although conference organizers have offered press passes to both staff at The Sick Times and me in the past, for this conference, they refused to issue a press pass. The Sick Times paid the conference registration fee. When asked to clarify the reason for their policy change, the organizers declined to comment.
The following is a summary of conference highlights, with a priority on actionable information for people with dysautonomia and their family members.
Launching the POTS BRAIN initiative
Given the scarcity of research funding, and the difficulties that researchers are having in conducting larger-scale studies, Dysautonomia International is launching a biobank initiative, called the Postural Orthostatic Tachycardia Syndrome Biobank Research and Information Network, or POTS BRAIN for short.
This biobank will include people with POTS and its many comorbidities, and is meant to facilitate research. Lauren Stiles, the founder of Dysautonomia International, noted in her opening speech that researchers are increasingly contacting the organization because they have an idea for a study but don’t see people with the syndrome. Meanwhile, researchers who are already working in this field want to recruit a larger, more diverse cohort.
The POTS BRAIN initiative was officially launched during the conference weekend, with data collection for the biobank led by Lauren Stiles, Jeffrey Boris, and Amanda Miller. Attendees were able to participate directly at the conference by donating blood, undergoing a brief physical exam, and sharing their medical history.
These blood samples will be used for the biobank as well as a specific study of inflammatory markers. As part of the study’s privacy policy, participants will not be able to receive their lab results.
The biobank and inflammatory markers study will be open to participants between the ages of 15 and 80 who have a diagnosis of POTS and live in the U.S. There will be multiple study sites and potential options for remote participation, but specific details on how to join aren’t yet available, according to a Facebook post from Dysautonomia International.
Researchers will look at mechanisms of iron storage and inflammatory markers. “These are not the standard tests that your doctors are running,” said Miller, a neurologist at Lebanon Valley College.
Dysautonomia as an inflammatory and autoimmune process
The conference featured studies on inflammatory and autoimmune processes in people with dysautonomia. A number of speakers mentioned the role that mast cell degranulation, which leads to the release of histamine, plays in dysautonomia. Other speakers mentioned the difficulties that people have in getting a diagnosis of Sjögren’s disease, which is an autoimmune disorder that commonly results in dysautonomia.
In one talk, Blair Grubb, a physician at the University of Toledo Medical Center, described inflammatory and autoimmune markers that studies have found in people with POTS. Grubb said that 80% of his POTS patients have platelet delta granule storage pool deficiency, which develops as a result of chronic inflammation. In a 2025 paper, Grubb’s research group found that people whose POTS was triggered by a SARS-CoV-2 infection had similar rates of platelet storage pool deficiency, compared to people whose POTS was triggered by a different cause.
Grubb also discussed autoantibodies, immune system proteins that incorrectly attack the body, that studies have found in people with POTS. These include adrenergic and muscarinic receptor autoantibodies.
Finding different inflammatory and autoimmune processes in people with POTS opens up new avenues for diagnosis and treatment, Grubb said. “I think these will be used more in diagnostic criteria,” he said, adding that this will also help “justify” potential clinical trials with immunosuppressive drugs.
In another talk Brent Goodman, neurologist at HonorHealth, discussed the difficulty that some people with Sjögren’s disease are having in getting diagnosed. For many people with the disease whose symptoms initially present as neurological or as dysautonomic, a standard blood test for the disease can be unreliable, Goodman said. For these people, diagnosis is typically achieved by performing a lip biopsy, which is also a very imperfect test.
Finding different inflammatory and autoimmune processes in people with POTS opens up new avenues for diagnosis and treatment, Grubb said. “I think these will be used more in diagnostic criteria,” he said.
Blair Grubb, University of Toledo Medical Center
Clinical trial results: Ivabradine versus propranolol
Satish Raj, a cardiologist from the University of Calgary, presented results from recent papers published by his research group.
In a randomized crossover trial, Raj and his colleagues looked at the effectiveness of propranolol, a beta-blocker, versus the heart failure drug ivabradine or a placebo. Over three months, participants tried all the medications, one at a time, for one month each, while blinded as to which one they were taking. Both propranolol and ivabradine were more effective compared to the placebo, although there was no significant difference in effectiveness between ivabradine and propranolol.
When the researchers asked the participants to choose which medication they preferred, there was about a 60/40 split between the ivabradine and the propranolol. “People were very passionate,” Raj said. “The people that liked the propranolol really hated the ivabradine. The people that liked the ivabradine really hated the propranolol.”
The recent RECOVER-AUTONOMIC trial also found that ivabradine was able to lower heart rate for Long COVID but did not have a significant effect on symptoms, except for when combined with behavioral interventions such as a high-salt diet and compression garments.
Treating people with ME
An ongoing debate about the role that exercise should play in managing dysautonomia led to tension at the conference. Although the number of people who have both POTS and ME is likely significant, we still do not have an accurate estimate for the comorbidity rate. This lack of data has contributed to POTS clinicians sometimes giving people with both POTS and ME inappropriate, and often harmful, advice about exercise. The fact that they are now gathering under the same roof, with Dysautonomia International facilitating the collaboration, is a sign of progress.
However, there were some growing pains. A number of experts across multiple sessions repeated the idea that exercise is the best medicine for POTS, without mentioning that graded exercise therapy is contraindicated for people who also have ME.
In contrast, two sessions specifically discussed strategies for treating people with PEM. This included University of the Pacific physical therapist Todd Davenport’s talk on energy limitations in people with ME and University of Utah Health physical therapist Clayton Powers’s talk on rehab strategies for home- and bedbound people.
Davenport presented an overview of what we know about PEM and the role of dysautonomia in ME. This included results from the Multi-Site Clinical Assessment of [ME], which were published in 2025. This study, which surveyed 301 people with ME, found that 97% of patients had at least one system of autonomic dysfunction, and that autonomic dysfunction correlated with greater illness severity. “I didn’t set out to be a dysautonomia researcher, but I sort of fell backwards into it, because it’s just so prevalent in ME,” Davenport said.
Davenport also presented his “energy system first aid” concept, which prioritizes pacing and aims to stabilize the patient, similar to the process of splinting and stabilizing a broken leg in order to let it heal. This can improve a person’s overall health while increasing the reliability of their energy system. “The take-home message is to stabilize and rehabilitate,” Davenport said, adding that energy conservation strategies, such as pacing, can optimize a person’s functioning, giving them back a measure of predictability in their life.
Stabilizing should always be a top priority, Davenport emphasized. “Deconditioning is always a reasonable concern, but PEM always wins, and when PEM wins, the patient loses,” Davenport said.
In Powers’s session on caring for home- and bedbound people, he acknowledged these people are under-recognized in research, rarely seen in clinics, and often not listened to. “My goal today is not to speak for this community, but to amplify what so many of you have already been saying for years, and to help clinicians hear it,” Powers said.
My goal today is not to speak for this community, but to amplify what so many of you have already been saying for years, and to help clinicians hear it.
Clayton Powers, University of Utah Health
For home- and bedbound people, Powers’ goal is to stabilize them as much as possible and restore some functionality. He uses approaches such as pneumatic compression, inflatable sleeves that can help keep blood circulating in the extremities. He also recommends glymphatic massage, which stimulates fluid flow in the brain and spinal cord regions, and teaches the technique to caregivers. He cautions a very gentle approach in the beginning, especially for more severe people. “The glymphatic system is increasingly being recognized as a contributing factor in why patients have a hard time recovering after exertion,” he said.
Powers also finds that telehealth is useful, especially for his more severe patients, as this helps them conserve energy.
Two sessions were dedicated to the Utah ADaPT Program, which is a graded exercise aerobic program designed for people with POTS. Neurologist Melissa Cortez and the physical therapist Lauren Ziaks presented these sessions.
The ADaPT program — originally called the “ADaPT protocol” — screens people for PEM using the DePaul Symptom Questionnaire and also accounts for comorbidities such as hypermobility. However, there is no pacing arm: all patients, including those with PEM are enrolled in the controversial graded exercise program.
For managing regressions, such as symptom flare-ups, Ziaks recommended unproven and controversial “motivational interviewing” and counseling people about their “fear avoidance and the impact of disability.”
Cortez said that, to date, they have evaluated several hundred participants who have gone through the Utah ADaPT program.
Participants were asked to give feedback on the helpfulness of the program, using a scale ranging between –7 and +7, with negative numbers indicating that it was not helpful. The feedback system, which was collected either through a phone or online survey, was not an anonymous process. According to Cortez, participants with and without PEM reported equal proportions of positive scores.
However, as Cortez noted, there was a reporting bias. So far, almost two-thirds of the group has not rated the helpfulness of the program. “Were the other half not giving us a score because they didn’t want to tell us bad news, because they were doing bad?” Cortez said. “We don’t know for sure.”
These sessions were a reminder that expertise in both ME and POTS is needed to care for some people with these diseases. Although exercise can be a helpful intervention for some people with POTS, for people who have both ME and POTS, pushing past their limits will lead to debilitating crashes.
Even so, the idea that exercise is the best medicine for all people with POTS still lingers. As Davenport noted, “We need to interrogate who has the fear here. We can’t be afraid of not exercising.”
We need to interrogate who has the fear here. We can’t be afraid of not exercising.
Todd Davenport, University of the PAcific
Rachel Fairbank is a freelance health journalist based in Houston, Texas. Her work has appeared in publications such as Lifehacker, Texas Monthly, Nature, National Geographic, Houston Chronicle, The Washington Post, and The New York Times.
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