Long COVID, ME/CFS Patients Protest in Front of White House

WASHINGTON — “Many of us are going to be so sick tomorrow.”

Those were the words of Terri Wilder, one of the patients with long COVID or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) who protested in front of the White House on Monday, asking the federal government for more money and more attention to those conditions. “We made the choice to come out here because lives depend on us showing up,” she said.

“We are here today because this pandemic is not over; there are people that are still sick; millions of people … with ME/CFS have been living with long-term consequences of infection for decades,” Laurie Jones, executive director of #MEAction, an organization for ME patients, told MedPage Today in an interview. “If the government had listened to us years and years ago, then we could be in a very different place, but it ignored us. And so this is a disaster.”

Jones and other protesters expressed frustration that President Biden declared the pandemic over the night before while being interviewed on “60 Minutes.”

“We still have a problem with COVID. We’re still doing a lot of work on it … but the pandemic is over,” he said. “If you notice, no one’s wearing masks. Everybody seems to be in pretty good shape. And so I think it’s changing.”

“Instead of Biden saying the pandemic is over, we want him to acknowledge that there is another pandemic, and it’s living with long-term consequences of having post-infectious disease,” said Jones. She and several dozen other protesters marched in front of the White House, chanting slogans such as “History will recall, Biden did nothing at all” and “ME treatment now,” while also repeating the word “shame” while facing the White House. They also committed several acts of civil disobedience, including laying down on the sidewalk.


Photo Credit: Joyce Frieden

Lisa McCorkell, a long COVID patient from Oakland, California and co-founder of the Patient-Led Research Collaborative for long COVID patients, agreed that the pandemic is far from over. “We’re at 20 million Americans disabled by long COVID,” she said. “Both ME and long COVID have not been paid attention to over the last 2 years — and several decades for ME.”

Asked why ME and long COVID patients were joining forces, McCorkell, who contracted COVID in March 2020 and subsequently developed postural tachycardia syndrome, noted that “about half of people with long COVID meet the diagnostic criteria for ME. Long COVID is ME in a lot of cases, so we definitely need to make sure people with ME are taken care of.”

Protesters are asking for several things, explained Wilder, an ME patient from Minneapolis, in an interview. “We’re going to demand that the government declare long COVID and ME a national emergency,” she said. “People are disabled, and there has not been adequate government response to this. We need things like education for medical providers so that they know how to take care of folks like us. We need economic support. Many folks are really struggling because they have no way to take care of themselves, feed themselves, or have housing … I would love to have a Ryan White CARE Act like the HIV community has,” which could provide long COVID and ME patients with navigation services, housing, and dedicated clinics.

“We need public education so that people, families, and society understand that this disease is real, that it is something that is not going to be over,” Wilder continued. “It’s something that could be a long-term disability. So we’re here to demand action from our government.”

That also includes more research on long COVID and ME at the NIH, she added. Jones also pressed for more research, noting that “people have stories of having had mono and never getting better, having had bird flu and never getting better. If people were isolated and studied in a more concrete way, we’d have treatments now.”

One big problem for ME patients is that doctors often don’t recognize the disease, said Jennifer Nish, an ME patient from Lubbock, Texas. “I’ve had it for 17 years and it took me 15 years to get a diagnosis,” she said. “I essentially got diagnosed because I was lucky, because there’s a nurse practitioner in my doctor’s office who has ME/CFS, and that’s the reason my doctor knew what it was. For the previous 15 years, I was struggling and nobody could give me a reason why.”

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    Joyce Frieden oversees MedPage Today’s Washington coverage, including stories about Congress, the White House, the Supreme Court, healthcare trade associations, and federal agencies. She has 35 years of experience covering health policy. Follow

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