The reporting at Johns-Hopkins is still fucked up
WaPo:
Biden announces long covid strategy as experts push for more
President Biden on Tuesday directed government agencies to take additional steps to research and treat long covid, a condition that remains often mysterious even as it has sickened millions of Americans.
Under a memorandum issued by Biden, the Department of Health and Human Services will coordinate a government-wide action plan to address long covid, which is estimated to afflict anywhere from 7.7 million to 23 million Americans, according to a recent federal watchdog report.
The government also will issue a report in 120 days detailing available services and support for those who suffer from long covid, accelerate efforts to enroll participants in a clinical research study and pursue federal protections for people with the condition.
The government will expand a nationwide network of long covid clinics being run through the Department of Veterans Affairs, with officials saying they are already providing new insights on how to care for long covid patients. Federal officials will also launch a new initiative, dubbed the “Health+ project,” to solicit feedback from people living with long covid and use it to shape practices at clinics nationwide.
Experts who have been studying the condition, which is linked to fatigue, brain fog and other symptoms that can linger for weeks, months or even years, hailed Biden for assembling a government-wide effort to combat long covid. They said it was an overdue recognition of the condition’s impact and reach. But many also said the administration must go further in devoting resources and making long covid a priority, reiterating that millions of people are eager for immediate treatment and help.
It’s “a landmark moment in long covid,” said Harlan M. Krumholz, a professor of medicine at the Yale School of Medicine. “The White House [is] formally recognizing the magnitude of this health threat and formally committing to advancing knowledge in this area while simultaneously providing support for people who are suffering.”
Ezekiel Emanuel, a University of Pennsylvania bioethicist who recently coordinated dozens of experts, including Krumholz, to issue recommendations on addressing long covid and other pandemic-related impacts, said Tuesday’s announcement is a “good step in the right direction … but it needs to be bigger and faster.”
Frank Ziegler, 58, an attorney in Nashville who contracted the coronavirus in January 2021 before he was vaccinated, said the announcement is “very encouraging” and will hopefully increase awareness of the condition and cut through red tape. Ziegler had a mild case but has since suffered from shortness of breath, tremors in his hands and cognitive issues.
“It’s a recognition of the fact that long covid is real and that it does exist. So many people are told it’s psychological,” Ziegler said.
But experts who study long covid said more needs to be done and the initiatives underway are not large enough.
Emanuel cited a National Institutes of Health study on long covid that has been staked with $1.15 billion and aims to enroll 40,000 people — goals that Emanuel characterized as “too small,” given the millions of Americans afflicted with the condition who are “desperate” for aid and answers.
“I get calls from people who are having fatigue or having shortness of breath upon minimal exertion. They really want some therapy. They want something,” he said.
David Putrino, director of rehabilitation innovation for Mount Sinai Health System in New York, critiqued a separate $20 million initiative to launch “centers of excellence” that specialize in long covid research and treatment.
“We are talking about $20 million to cover building out care coordination strategies for a mass disabling event that is affecting an estimated at least 2 percent of all Americans with a multisystem, multi-organ condition,” Putrino said. “This is complex care — $20 million doesn’t get you very far.”
White House officials said they were moving quickly to ramp up research and vowed to share new data and findings as they emerged.
“We feel the urgency of addressing long covid,” said an official who spoke on the condition of anonymity to detail the initiative. “We know that families and communities are feeling the impacts every day on their lives, and we can’t wait to act, so we are not waiting.”
Krumholz said Tuesday’s announcement and additional research into long covid may unlock clues to other poorly understood conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.
“It will likely pay dividends for a whole spectrum of post-viral conditions,” he said.
“We are talking about $20 million to cover building out care coordination strategies for a mass disabling event that is affecting an estimated at least 2 percent of all Americans with a multisystem, multi-organ condition,” Putrino said. “This is complex care — $20 million doesn’t get you very far.”
White House officials said they were moving quickly to ramp up research and vowed to share new data and findings as they emerged.
“We feel the urgency of addressing long covid,” said an official who spoke on the condition of anonymity to detail the initiative. “We know that families and communities are feeling the impacts every day on their lives, and we can’t wait to act, so we are not waiting.”
Krumholz said Tuesday’s announcement and additional research into long covid may unlock clues to other poorly understood conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.
“It will likely pay dividends for a whole spectrum of post-viral conditions,” he said.
Interconnectedness - when do we get this through our vacuum-packed cement-filled heads?
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