Long COVID patients aim to educate doctors about their disease

Patients and patient advocates in New Hampshire will bring together experts from around the country at a symposium at Dartmouth in November

Arna DiMambro Lewis, who has long COVID, is one of the patient advocates who has been organizing a Nov. 6 event at Dartmouth to bring together experts from around the country. She has been forced her to make significant changes to her lifestyle because of her symptoms. She used to do yoga and hike, activities she can no longer do.Jessica Rinaldi/Globe Staff

CONCORD, N.H. — Frustrated by a lack of progress, long COVID patients in New Hampshire are taking doctor education into their own hands.

Patient advocates have organized a Nov. 6 event at Dartmouth to bring together several long COVID experts from around the country. Medical providers will be able to earn continuing education credit for attending.

Patients hope the event sheds more light on their condition and equips medical providers including nurses, doctors, and physical therapists with some tools to diagnose and treat their conditions.

“It says a lot that we, as patients, are having to organize a medical education event on our own illness,” said Leah Stagnone, a patient advocate who founded a New Hampshire chapter of ME Action, an ME/CFS advocacy organization.

ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome, considered a complex and disabling illness by the Centers for Disease Control and Prevention. Several preliminary studies show that about half of people with long COVID have severe enough symptoms to be diagnosed with ME/CFS.

“Ultimately we are hopeful for a future where our medical institutions and our government are the ones taking responsibility for this so that we don’t have to use our really limited physical capacity to do that,” she said.

Doctors who have specialized in ME/CFS said the medical community should draw from the existing body of knowledge when addressing long COVID. Among them is Dr. Lucinda Bateman, who founded a nonprofit clinic called the Bateman Horne Center in Salt Lake City, Utah, that also focuses on research and doctor education.

Bateman is one of the speakers who will travel to Dartmouth for the November event, called “The Untreated Epidemic: Understanding and Treating Long COVID and ME/CFS.”

“We know a lot about ME/CFS already, so people who are taking care of long COVID don’t need to start from scratch,” she said. There’s information available, for instance, about how the illness presents and how to help patients live with the illness, even in the absence of a cure.

But Bateman said primary care doctors need to be trained to recognize the symptoms, since there are not enough long COVID clinics to meet the need for care. There are about 200 symptoms that a long COVID patient may face.

“It impacts their energy, their cognition, their sleep, their circulation, their immune system, and so you can strategically aim at some of those by prioritizing them,” Bateman said.

Arna DiMambro Lewis (left) and Creighton Ward pose for a portrait together in Portsmouth, N.H. DiMambro Lewis is a patient advocate who also has long COVID. Ward, who doesn't have long COVID, is also part of the ME Action group. She said it's "exceedingly rare for non-disabled outsiders to this condition to be involved with patient advocacy." “There's just a lot of societal neglect and ignorance of this condition," Ward said.Jessica Rinaldi/Globe Staff

Arna DiMambro Lewis has dealt with some of those symptoms in her battle against long COVID that began in 2022. She’s worked with Stagnone and others at the ME Action chapter to organize the Dartmouth event.

Lewis said, for patients, finding a doctor who knows how to help makes a dramatic difference in getting effective care.

“I was on bedrest for nine months, and mostly I attribute that to not being able to get to a neurologist until that time,” she said.

Taking midodrine (a drug that treats hypotension) three times a day has allowed Lewis to remain upright during the day. She still deals with brain fog and fatigue. While she had been healthy and active before long COVID, she’s had to give up her favorite activities like yoga, biking, and hiking.

There are tests that can show elevated hormone levels or other chemical messengers in the blood linked to viral activity in the body, Lewis said. “But the typical doctor doesn’t know about these things,” she said.

Dr. Jeffrey Parsonnet, who runs Dartmouth’s long COVID clinic, said he plans to attend the event and is slated to speak as part of a panel on enhancing collaboration between patients and providers.

“I was very worried about appearing in this symposium because I really don’t want to be a punching bag,” he said.

Parsonnet said he understands patients’ frustration, but emphasized that research takes time and answers about helping patients with long COVID aren’t readily available. Developing a treatment for HIV took five years, for example, he said.

“There’s thousands of articles about long COVID by researchers. That hasn’t come up with really good answers yet, but that shouldn’t be confused with not trying,” he said. “That shouldn’t be confused with dismissing it. That shouldn’t be confused with ‘nobody cares.’”

Netia McCray, a patient advocate who leads a nonprofit called Mbadika, said there’s always been a gap between patients and doctors, and miscommunication is one of the things driving it because patients and doctors speak different languages. McCray is slated to speak on the same panel as Parsonnet during the Dartmouth event.

Doctors are dealing with a “tsunami” of patients but often aren’t equipped with the tools to help them, she said. Patients are desperate for answers, she said, and doctors are aware their ability to help is limited.

She said productive conversations come about when doctors are invited to the table, not when they feel they’re being attacked for not knowing something.

The main message she hopes to convey at the event: “The expertise of patients is just as valuable as doctors or medical providers,” McCray said.

Lisa McCorkell, another speaker and a long COVID patient who co-founded the Patient-Led Research Collaborative, echoed that message. She said it’s important to focus on the patient experience, a perspective that she said historically has been “too often left out.”

When it comes to long COVID and ME/CFS, McCorkell said patients have been driving the research and understanding of these conditions forward.

“There’s a severe lack of education on how best to treat these conditions,” McCorkell said. “So what that often leaves providers doing is questioning the patient and their experience, often dismissing their experience or giving treatment advice that is outdated or even harmful.”

One example is prescribing exercise, which can actually worsen symptoms and leave patients in a debilitating energy crash that can even lower their baseline permanently, McCorkell said.

“The central message to providers is that these conditions are biomedical conditions, and while we don’t have a cure, there are treatment options available to help manage symptoms that are worth exploring for patients,” she said.

“Even just saying, ‘I believe you and, you know, we’re going to try to work through this together’ is so huge for patients who have likely had a history of dismissal,” she said.