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WASHINGTON -- Long COVID patients and allies rallied in front of the Lincoln Memorial on Friday -- International Long COVID Awareness Day -- to demand that the federal government spend more money on long COVID research and reinstate mask mandates in healthcare facilities, among other actions.

"We need resources for every man, woman, and child to go to the doctor and have that doctor be educated" in how to diagnose and treat long COVID, said Dara York, a nurse and long COVID patient from the San Francisco area. "You must take action now."

She also urged doctors "to remember their oath to do no harm, and protect and advocate for patients. Remember how to show compassion, and find your humanity."

The rally was organized by , a group describing itself as "a grassroots group of people, including long COVID patients, the COVID-cautious community, and allies, gathering in Washington, D.C. on March 15th, 2024 in order to bring attention to the urgent need for change from the government regarding the handling (or lack of) of COVID and long COVID." Its goals include getting the federal government to:

• Declare long COVID a national emergency
• Implement emergency use authorization for drug repurposing and trials
• Establish annual funding for long COVID programs and research to find a cure
• Develop guidelines for physicians on long COVID, and continuing education on breaking research
• Publicly track SARS-CoV-2 in wastewater and provide affordable polymerase chain reaction (PCR) testing nationwide
• Establish regular White House press communication regarding progress toward stated goals, and real-time data for COVID transmission awareness

The group raised money from individual donors and received no outside support, organizers said.

Paul Hennessy, an entertainment marketer and long COVID ally from Los Angeles, criticized CDC Director Mandy Cohen, MD, MPH, for her recent decision to relax isolation guidelines for patients who contract COVID. Under the new guidelines, patients can resume normal activities after 1 day of being fever-free, although they are urged to mask in public over the following 5 days.

"I think everybody here is pretty furious with that decision, because it's not based on any science," Hennessy told MedPage Today.

"As we know, COVID is contagious for 10 days or more," he said, noting that the decision "is more based on convenience than actual fact. We think it's going to obviously continue the spread of this, it's going to lead to more disability, death, and just more sickness ... They tell us to get vaccinated and wash our hands to protect from an airborne illness, so we're all quite upset about that. So that's one of the reasons we felt the need to protest here."

Marjorie Roberts, a former life coach in the Atlanta area who had to retire early due to long COVID, is also unhappy with the CDC. "I think nothing of the CDC because the CDC is thinking nothing about me -- they don't think about us," she said in an interview. "They don't think about the effect long COVID and COVID as a whole has had on myself and millions of other people. So until they start to think about me, I'm going to reciprocate their feelings."

"COVID is not over," she added. "Contrary to what we're being told, it's not over and it won't be over until the government steps in, because they have power to make a change."

The protesters also want more action on the research and treatment front, Hennessy said. "The NIH was given billions of dollars to study this during the American Rescue Plan. Where that went, we don't know. It went to some studies, but long COVID patients have not seen anything -- there's no FDA-approved medications, there's no treatments, there's no clean air laws. So we've been left with absolutely nothing."

As to how many patients are currently suffering from long COVID, "officially, I believe it's 18 million, but that's a vast undercount," he said. "So many people don't even know that their post-COVID conditions are related to COVID, because we're being told that it's equivalent to a cold."

Some of the speakers at the rally were very passionate. "We need antibodies now -- not in a year, not in 10 months, not eventually, now," said Robyn "the Redd" Saldino, a patient who has had long COVID for 2 years and works with , an advocacy group for COVID-19 precautions led by disabled, ill, and immunocompromised patients. "We need N-95 mandates -- not for some people, not just for providers, for everyone. Now. We need universal healthcare that actually covers healthcare. Now."

Addressing Congress directly, she said loudly, "What the f*** is wrong with you? This has gone on long enough. People are dead. People are dying. ... Get your s*** together and do something about it."

Robi Tamargo, PsyD, emphasized the effect that long COVID has on the brain, calling it "neuro-COVID."

"It is not 'brain fog' if it continues once you've recovered from COVID; it's neuro-COVID," she said. "If you develop new persistent memory, comprehension, attention, concentration, reading, writing, or word-finding difficulties, you don't have the invalidating, diminishing term 'brain fog' -- you have cognitive impairment, or neuro-COVID. If you still have lost or altered taste or smell, you have neuro-COVID. If you have new or worsening headaches, seizures, trouble sleeping, tremors, tingling, muscle spasms, or joint pain, you have neuro-COVID."

"Mr. President, Congress, and governors, I ask you to please familiarize yourselves with newly published research showing our younger adults aged 18 to 44 -- which happens to be our military-aged cohort -- are having serious difficulty with memory, concentration, and decision making, which in my clinical world is known as 'higher cortical dysfunction,'" she added.

Tamargo, a military veteran, urged the Biden administration to provide more help for veterans. "They need proper diagnosis of long COVID so they can receive necessary disability-covered compensation when they are no longer permitted to serve" due to their illness, she said.

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