COVID-19 Update

Slight uptick in the 7-Day Average Cases reported at WaPo.

Even though the weekend slump hit with a vengeance.

And yet, it seems pretty obvious that the Republicans are determined to drag their feet, fly-specking Biden's request for the money necessary to keep up the efforts to kill this monster, &/or be ready for the next monster.

I really don't understand the GOP's continued obsession with trying to do this on the cheap when it should be obvious by now that healthcare in general - but pandemic readiness in particular - are things you just can't get all chintzy about.

Force of habit?

WaPo: (pay wall)

Lawmakers close on covid funding deal that halves White House request

$10 billion pact would finance vaccines and treatments but provide far less for global vaccination effort

Key Senate lawmakers said Thursday they had agreed on a framework to continue funding coronavirus vaccines, antiviral treatments and other supplies for Americans, but that would drastically cut plans to help vaccinate millions of people around the world.

“We’ve reached an agreement in principle on all the spending and all of the offsets,” said Sen. Mitt Romney (R-Utah), who has led negotiations for Republicans after they balked at the need for $15 billion in new funds, and House Democrats raised concerns about a planned compromise.

If passed in its current form, the $10 billion deal would represent a significant disappointment for the White House, which had publicly campaigned for at least $22 billion in new funds and would probably be forced to scale back elements of its planned response. But lawmakers are facing a rapidly approaching deadline, with Congress soon taking a two-week break, and administration officials warning that they are effectively out of cash for urgent coronavirus needs. The federal government has already begun to wind down a program to cover the costs of health-care providers that give coronavirus tests, treatments and vaccinations to uninsured Americans, an initiative that officials said has cost about $2 billion per month.

Senate Minority Leader Mitch McConnell (R-Ky.) told The Washington Post he was “optimistic” a final deal would be reached, a stance echoed by Senate Majority Leader Charles E. Schumer (D-N.Y.) in remarks on the Senate floor.

“We are getting close to a final agreement that would garner bipartisan support,” Schumer said, adding that lawmakers were “working diligently” to agree on a package that would address both domestic and global needs.

Romney, who said the money would come from unspent funds in previous stimulus packages, added that he expected a vote on the deal next week.

About half of the money would go for covid therapeutics, while the other half would be at the “discretion” of the secretary of the Department of Health and Human Services, Sen. Roy Blunt (R-Mo.) told reporters. A Republican aide said that $750 million was being eyed for research and development of new vaccines and treatments.

Several GOP lawmakers said about $1 billion in funding would be set aside to support global vaccinations — down from the White House’s $5 billion request for global aid. But that number appeared to be in flux, with several Democrats on Thursday arguing for considerably more and lawmakers acknowledging that they were still negotiating.

“If there was a deal, I think we’d be voting on it,” said Sen. John Thune (S.D.), the chamber’s No. 2 Republican.

Sen. Christopher A. Coons (D-Del.) has been among the lawmakers pushing to include some funding for the global response after some lawmakers moved to drop it completely. “There [are] 2.5 billion people unvaccinated in the world, and that is an ongoing daily risk to the United States,” Coons said.

The funding package’s collapse three weeks ago prompted U.S. officials to warn that they had exhausted funds to purchase vaccines, antiviral treatments and other supplies, putting the nation at risk. The White House has already reduced the supply of monoclonal antibody treatments to states by 35 percent because of the lack of pandemic funding. Congress is also set to begin a two-week recess on April 9, raising fears that failing to secure a deal now could stall the U.S. response into May.

“Congress, please act. You have to act immediately,” President Biden said in a speech on Wednesday, saying that officials had already been forced to delay or cancel planned orders for covid treatments. “The consequences of inaction are severe. They’ll only grow with time, but it doesn’t have to be that way.”

A Biden administration plan to help vaccinate the world will also soon run out of money, administration officials said. That plan, led by the U.S. Agency for International Development, would boost the infrastructure for administering vaccinations in developing nations, which officials say will curb the risk of variants emerging overseas and leading to outbreaks in the United States.

“Without more funding … the United States would have to turn its back on countries that need urgent help to boost their vaccination rates,” Atul Gawande, who leads global health at USAID, wrote in a Washington Post op-ed on Wednesday. “We can’t let this happen. It not only endangers people abroad, but also risks the health and prosperity of all Americans. The virus is not waiting on Congress to negotiate; it is infecting people and mutating as we speak.”

Some Democrats have called for as much as $17 billion in global covid aid and criticized congressional leaders for backing away from international commitments.

“I recall the president saying that the United States should be, would be, the ‘arsenal of vaccines,’ ” said Rep. Tom Malinowski (D-N.J.), vice chair of the House Committee on Foreign Affairs. “And I’m extremely disappointed that ever since that statement, and at every possible opportunity, this has been de-prioritized.” Malinowski said he would not support a funding package if it did not include some money for the global response.

For weeks, the White House has publicly sought more than $22 billion for the response, although Biden officials in early January had privately concluded that they needed as much as $80 billion in additional covid aid for vaccines, therapeutics and other supplies.

By early March, congressional leaders had settled on about $15.6 billion and sought to attach that to a broader package to fund the government, an effort to ensure passage of the coronavirus aid.

But some House Democrats were upset over one of the financing mechanisms — an effort to claw back money for state governments to address their pandemic needs. The uproar caused House leaders to strip the coronavirus aid from the deal.

Arkansas Gov. Asa Hutchinson (R), the chairman of the National Governors Association, said it would have been unfair to rescind money states had been counting on. But he said he still wanted Congress to clinch a deal on more aid, as long as it was fully paid for.

“The last thing that Americans would expect is that we get caught flat-footed again,” Hutchinson said in an interview last week. “The administration says that takes additional funding. I take them at face value for those comments, and so then we got to figure out where that money’s going to come from.”

Dawn Staley For President

Dawn Staley has won just about everything there is to win on a basketball court.

I remember Staley from her playing days at UVa as a fiery point guard who ran the team on the floor like she was out for a Sunday drive - or operating a backhoe - or making tiny little sutures with a surgeon's laparoscope - or whatever it took at the moment to solve the puzzle in front of her and engineer something out of almost nothing if she had to.

She was all piss-n-vinegar, but with a brain that worked overtime, and what she couldn't get herself or her teammates to do, she did anyway. She's always struck me as one of those competitors who never lose - they just run out of time before they can beat your ass.

She took another big step last night up into some even more rarified air.

WaPo: (pay wall)

Dawn of an era: Staley and South Carolina now set the standard

MINNEAPOLIS — Twelve seconds remained when Geno Auriemma started walking toward Dawn Staley. The uncertainty was over, and so was Connecticut’s unblemished record on national championship night. For the first time, on the final evening of a women’s college basketball season, Auriemma ambled over to an opposing coach, humbled and congratulatory.

Auriemma, who has led Connecticut to 11 titles, had stood still with his arms crossed for several minutes. He was so stiff you couldn’t even tell he was breathing. He wasn’t stunned; it was more like resigned. For the first time, he stared out onto a championship court, saw a dominant team in unfamiliar colors and could only bow to South Carolina’s greatness.

As Auriemma embraced Staley, the clock hit zero and the confetti flurries began, signifying that the baddest women’s team in the sport this season had usurped the great Connecticut dynasty with a 64-49 victory Sunday night before 18,304 at Target Center.

“They were the best team all year,” Auriemma said, repeating what he told Staley as they hugged. “When you’re dealing with that all year long, it’s not the easiest thing in the world. They did a magnificent job managing all that and the expectations that go with that.”

Said Staley: “We weren’t going to be denied.”

It’s premature to consider this a torch-passing event. However, South Carolina yanked something away from Connecticut on this night. The Huskies, who endured a snakebit season full of injuries, retreated like they haven’t since they became a supernova program. They didn’t take the lead the entire game. They were tied for only the first 22 seconds. The Gamecocks scored first, and for the next 39:38, they pounded the most acclaimed team in the sport. They led 22-8 after the first quarter, and Connecticut was playing catch-up the rest of the way. While the Huskies made a few runs and capitalized several South Carolina scoring droughts, it never felt as if the Huskies had a chance.

“They were just too good for us,” Auriemma said.

South Carolina point guard Destanni Henderson danced around the court and scored a game-high 26 points. Aliyah Boston, the national player of the year and the tournament’s most outstanding player, had 11 points and 16 rebounds. Paige Bueckers, who had 14, was the only U-Conn. player who scored in double figures. The Gamecocks had almost as many offensive boards (21) as the Huskies had total rebounds. As a result, they scored 22 second-chance points while limiting Connecticut to five. At times, it looked unfair.

It feels like a seminal moment in the sport’s hierarchy. Since the end of Pat Summitt’s run at Tennessee, Connecticut has dominated without a peer that could truly trade punches with the Huskies over a long period of time. In truth, even Tennessee strained to keep pace, and it’s astounding because Summitt won five of her eight national titles after Connecticut began its championship hoarding in 1995. In the past 27 years, plenty of other elite teams have emerged and been able to smuggle some moments. But the Huskies have kept most of them from enjoying long reigns. Their dynasty, overpowering and unfathomable, grates on others’ greatness.

For all the past talk about Connecticut’s dominance being bad for the game, the Huskies actually have elevated the sport because the standard for winning a championship is higher than it has ever been. At the same time, like any wicked good ruler, they have kept other great programs from maximizing their excellence.

Connecticut didn’t just enter Sunday night perfect in 11 championship games. They were unbeaten despite facing some of the best of the best. Summitt would have been the first college basketball coach since John Wooden to win double-digit titles, but the Lady Volunteers lost four times to Connecticut in championship games. Notre Dame Coach Muffet McGraw, another bitter rival of Auriemma, won two titles in her Hall of Fame career but lost in the final game twice to Connecticut. The Huskies turned back Stanford and Tara VanDerveer, owner of three championship rings, once. Louisville Coach Jeff Walz has built a top-five program, but he’s still looking to cut down the nets partly because the Huskies have defeated the Cardinals two times on the last night of the season.

“Unfortunately for us, both of those U-Conn. teams would probably be ranked in the top five of all women’s basketball teams ever,” Walz said. “We just had a sucky year to have to play them.”

There are several elite teams, and access to that level is less exclusive than it used to be as parity builds in the sport. But there is one superpower, and worthy challengers have had to face that reality again and again.

Except for South Carolina.

Before the title game, Staley responded to questions referencing the Huskies’ 11-0 title-game record by joking, “We’re 1-0, so we’re 100 percent, too.”

Make it 2-0, with both triumphs coming in the past five years. That makes the Gamecocks (35-2) the most successful team in the game over that span. In tearing apart Connecticut, they completed a season in which they went wire to wire as the nation’s No. 1 team.

“Our team had the fight of champions all season long,” Staley said. “All season long.”

She called the victory “divinely ordered.” South Carolina never backed down from the pressure of being expected to win. Staley looked at Connecticut and saw possibility, not a team to be feared. And for now, even if it lasts a short time, Staley’s program is the new standard in women’s college basketball.

“I think a lot of what we’re able to do and get is off the backs of their success,” Staley said in appreciation of Connecticut. “I think the people up at U-Conn. treat their women’s basketball team as a sport. They’re forced to because of all the winning and all the success, but you could take a page out of their book.

“If you invest in it, you could end up having similar success. Actually, not even similar success. Just you could actually scratch the surface and have some success.”

The surface has been scratched. Now, with two titles in five years and two No. 1 recruiting classes on this roster, South Carolina has a chance to go higher. Asked about the goal for next season, Boston was simple and direct: “Same as this year.” After watching the Gamecocks on Sunday night, one thing about them is even clearer: They won’t be afraid of greatness. They’re chasing greater. They’re grating on the Connecticut dynasty now.

Meanwhile, On Planet Earth

In large areas of this country's most important human habitat, drought is persistent and threatening to disrupt our ability to feed people.

Now, the supplies of fresh water remaining to us are too dirty for human use.

EcoWatch:

50% of U.S. Lakes and Rivers Are Too Polluted for Swimming, Fishing, Drinking

Fifty years ago, the U.S. passed the Clean Water Act with the goal of ensuring “fishable, swimmable” water across the U.S. by 1983.

Now, a new report from the Environmental Integrity Project (EIP) finds the country has fallen far short of that goal. In fact, about half of the nation’s lakes and rivers are too polluted for swimming, fishing or drinking.

“The Clean Water Act should be celebrated on its 50th birthday for making America’s waterways significantly cleaner,” EIP Executive Director Eric Schaeffer said in a press release announcing the report. “However, we need more funding, stronger enforcement, and better control of farm runoff to clean up waters that are still polluted after half a century. Let’s give EPA and states the tools they need to finish the job – we owe that much to our children and to future generations.”

The report was based on reports that states are required to submit under the Clean Water Act on the pollution levels of their rivers, streams, lakes and estuaries. According to the most recent reports, more than half of the lakes and rivers are considered “impaired,” meaning that they fall short of standards for fishing, swimming, aquatic life and drinking.

Specifically, around 51 percent of rivers and streams and 55 percent of lake acres are considered impaired, The Hill reported. Further, 26 percent of estuary miles are also impaired.

The Clean Water Act was a landmark legislative achievement when it was passed in 1972. It promised to end the discharge of all pollutants into navigable waters by 1985, according to the press release. However, it has fallen short of that goal for several reasons, according to the report.

1. The act has strong controls for pollution pumped directly into waterways from factories or sewage plants but not for indirect pollution such as agricultural runoff from factory farms.
2. The Environmental Protection Agency (EPA) has dragged its feet in updating industry-specific technology-based limits for water pollution control systems. By 2022, two-thirds of these industry-specific limits had not been updated in more than 30 years.
3. Budget cuts have hampered the ability of the EPA and state agencies to enforce the law.
4. Permit requirements are poorly enforced.
5. Total Maximum Daily Loads, a kind of pollution control plan, are insufficient.
6. There are problems effectively managing watersheds that cover two or more states.
7. The report also broke down pollution by state. Indiana has the most miles of rivers and streams too impaired for swimming and recreation.

“Indiana’s waters have benefited from the Clean Water Act, but unfortunately, they also illustrate some of the gaps in the law,” Dr. Indra Frank, Environmental Health & Water Policy Director for the Hoosier Environmental Council, said in the press release. “We have seen persistent, unresolved impairments, especially for E coli bacteria in our rivers and streams, in part from industrial agricultural runoff. And we have also seen examples of Clean Water Act permits used to send water contaminated with coal-ash into our rivers. We need to halt pollution like this.”

Florida, meanwhile, had the most lake acres impaired for swimming and aquatic life.

“Florida’s toxic-algae crisis is the direct result of lax enforcement of phosphorus and nitrogen pollution limits in cleanup plans required by the Clean Water Act,” Friends of the Everglades Executive Director Eve Samples said in the press release. “Because these limits rely on voluntary ‘best management practices’ and a presumption of compliance, agricultural polluters regularly exceed phosphorus runoff limits while dodging responsibility — leading to harmful algal blooms in Florida’s lakes, rivers, estuaries, and even on saltwater beaches.”

The report did propose several solutions that range from making sure that the EPA and other agencies carry out their duties under the existing law to strengthening the act with new legislation to control runoff pollution.

This last is particularly important because agricultural runoff and other indirect pollution sources are the leading causes of waterway pollution.

“Factory-style animal production has become an industry with a massive waste disposal problem and should be regulated like other large industries,” the study authors wrote.

Death Of Irony, Part ∞

Notice how the people

who bitch the loudest

about "the woke mob"

are the same people who're

pimping "The Great Awakening"

With A Nod To Jimmy Carter

Carter took all kinds of heat for telling us he was going to line up his foreign policy with the basic tenets of human rights.

I'll admit that it sounded kinda limp at the time.

But the weirdness of "soft" power is that it ends up being the hardest thing - to do, certainly, but also the hardest thing to resist once it's put forward. How do you argue against doing what's right, when you know it's the right thing to do?

Invading a country, without real provocation - no matter how much you hate their government or the way they conduct themselves - is just wrong and unjustifiable. We didn't stick to that one in 2003. We failed miserably, went into Iraq for all the wrong reasons, and we're still paying a steep cost for it.

The same point could be made about Afghanistan in 2001. That one's a little harder, but the principles are the same. The asshole Taliban in charge of that government gave the bad guys a place to hang out, and so they shared in the guilt for 9/11. But a full-on invasion was a bad idea because first, it was disproportional, and second, because of that disproportional response, we stuck ourselves with a busted joint (just like Iraq) that we had to rebuild afterwards while ducking the blowback from people who were thoroughly ungrateful for our noble efforts to liberate them by fucking everything up for them, and now - after 20 years - we're pretty much right back where we started. 20 fucking years.

And we've heard all the same shit coming from Putin that we heard from Cheney and Rumsfeld and Rice and Bush - what a horrible threat "those people" are, and we have to get them before they get us.

It was bullshit then and it's bullshit now.

Putin's invasion of Ukraine is a war of conquest and nothing more.

So Biden is doing it about right, I think. He's trying to keep the world community focused on a very strong response, but doing it in a more balanced way that puts hard-power war-fighting resources in the hands of the Ukrainians while using the soft-power tools of sanctions and political pressure to degrade Putin's capacity to sustain his armed aggression.

The problem - as usual - is trying to get people to think in wider terms, and to start moving away from the old Henry Kissinger Real Politick I'm-Only-Out-For-Myself crap, which is very much what got us into this fuckin' mess to begin with.

WaPo: (pay wall)

Opinion: Too many nations still waffle on Ukraine. The U.S. cannot ignore them.

Russian aggression against Ukraine violated both morality and a principle of international law — the sanctity of sovereign borders. So stark was the transgression that neutral or nonaligned nations such as Switzerland and Sweden have strongly condemned President Vladimir Putin’s war and joined international sanctions against his regime. However, many large and influential nations, including some democracies with which the United States has strong relationships, have equivocated. It’s a troubling aspect of the crisis and calls for a deliberate but differentiated U.S. response.

The fence-sitters take a range of positions. In a category by itself is China, which has pursued neutrality while refusing to modify its prewar declaration of friendship with Moscow. Slightly less indefensibly, South Africa and India abstained from a United Nations resolution deploring Russia’s aggression and refused to levy any sanctions. Then come countries, such as Brazil, Mexico, Israel and the United Arab Emirates (not a democracy, to be sure), which did vote for the U.N. resolution but still balk at sanctions.

Each country has its rationalization, often related to an entanglement with Russia, either current or — in the case of South Africa, where some still feel a misplaced sense of gratitude for the Soviet Union’s support against apartheid — historical. India still buys most of its weaponry from Russia, despite its recent alignment with the United States, Australia and Japan against China. Brazilian agriculture depends on Russian fertilizer. Israel has a deal with Mr. Putin, whose air force in Syria allows Israeli airstrikes on Iranian convoys that supply Hezbollah guerrillas.

Only for Mexico is the problem pure, misguided ideology rather than conflict of interest. It has only $2.3 billion in two-way trade with Russia, but the United States’ southern neighbor and largest merchandise trading partner — $614.5 billion in 2019 — nevertheless sticks to non-interventionist dogma under President Andrés Manuel López Obrador. Some members of his left-wing political party — unconscionably — chose this moment to inaugurate a “friendship committee” with Russia.

The lesson, unfortunately, is that much of the world does not share the combination of moral outrage and geopolitical self-interest that has forged democracies in Europe, North America and the Pacific Rim into a solid coalition arrayed against Moscow’s war. Mr. Putin has spent years trying to co-opt countries around the world, no doubt in anticipation of a long-planned move against Ukraine. Undeniably, he is reaping some benefits from that now.

Countries supporting sanctions against Russia account for the vast majority of world economic activity, so the refusal of others to cooperate is not decisive. Still, the United States should not underestimate either the need to counter Russian influence among nations that are equivocating or the opportunities to do so.

The Biden administration’s approach should vary, depending on its leverage in each country. There’s not much point using moral suasion on China, for example, though hints to Beijing of the price it would pay for re-arming Mr. Putin appear to be having some impact. For the rest, Washington should aggressively deploy moral suasion, trade and aid — economic as well as military. That’s what Russia has been doing; this country must respond in kind.

COVID-19 Update

Medical research centered on the patient - what a novel approach.

WaPo: (pay wall)

How long covid is accelerating a revolution in medical research

When Liza Fisher’s body became racked by tremors shortly after she was hospitalized with covid-19 in 2020, she began an 18-month medical odyssey, consulting immunologists, cardiologists, neurologists and countless other -ologists in the hope they would know how to treat the crippling convulsions.

“They had no experience,” said Fisher, 38, a former flight attendant and part-time yoga instructor who now uses a wheelchair. So Fisher sought out fellow sufferers online, joining an increasingly vocal group of citizen scientists in their bid for research targeted at treating long covid.

Fisher’s experience — and those of her fellow sufferers — is advancing a revolution in research not just for covid but also many other conditions, experts say. Patients, who have typically been only subjects in the research process, are becoming partners in it.

They are documenting their symptoms online in real time, as well as helping to come up with questions and strategies for surveys and, eventually, to disseminate results.

Think of it as the guinea pigs working alongside the scientists.

“We bring experiential knowledge and have enough of an outsider’s perspective to see inefficiencies that people enmeshed in the system can’t see,” said Diana Zicklin Berrent, founder of Survivor Corps, a patient advocacy group that has been collaborating with researchers at Yale and other medical centers.

It is the latest step in the growing understanding that partnering with patients is not only the just and equitable thing to do but also that it can improve research. In the late 1980s, as the HIV/AIDS epidemic gained momentum, ACT UP and other groups successfully pushed to move drugs more quickly through the development pipeline. In 2010, the Affordable Care Act injected funding into patient-centered research.

Thank you, Democrats - and fuck you, Republicans, for trying to take that away.

All the while, advances in technology have mobilized patients to share emotional support, as well as real-time data about their symptoms online. Those forces have coalesced around long covid, prompting studies at major medical centers such as the University of South Carolina and Yale University that involve patients in every stage of research.

In many cases, experts say, researchers’ scientific goals differ from those of patients, particularly during a pandemic in which large numbers of patients prioritize finding immediate treatments.

“What is relevant to policymakers and clinicians is not always what is most important for patients,” said Nabil Natafgi, an assistant professor in the department of health services policy at the University of South Carolina’s Arnold School of Public Health. Natafgi said the pandemic has forced researchers to rethink how best to engage patients in research and make it more relevant for them.

Natafgi’s colleagues recently enrolled 15 patient experts as part of a virtual “patient engagement studio” that will include patient experiences in all stages of research. Martha Griffin, a school science coordinator in Austin who retired in 2020 after developing long covid, is one of them. She has been frustrated by recent research that focused on the virus itself and failed to take into account the human cost of living with fatigue and brain fog that makes even small tasks, like filling in researchers’ surveys, daunting.

“I would like for researchers to understand: What are the clues that would help our quality of life?” said Griffin, 62. “And not in five years. We need something right now.”

The need to find treatments for long covid has become increasingly urgent as the country shifts toward accepting the coronavirus as a constant lower-level threat. The government estimates that between 7.7 and 23 million people may already have long covid. Last month Sen. Tim Kaine (D-Va.), who still experiences tingling after a 2020 bout of covid, introduced a bill with the support of patient advocacy groups to expand treatment resources for people experiencing long-term effects.

That, experts say, requires involving from the earliest phases people who have intimate knowledge of living with long covid. The approach upends the traditional top-down process, in which clinical trials are designed by researchers at major academic medical centers and require patients to play largely by their rules: Volunteers typically show up in person at labs to give samples or for other kinds of in-person evaluations. The results are often published in densely written academic journals, aimed primarily at answering scientific questions rather than immediate patient concerns.

Only gradually have researchers and regulators come to recognize the importance of patient input, according to Mark Wolff, chief health analytics strategist at the global data analytics company SAS. Along with evaluating the safety and efficacy of a new drug or treatment, in recent years regulators began to include patients’ evaluations of what level of risk they might be willing to accept as part of that evaluation.

Katherine R. Tuttle, a nephrologist at the University of Washington, has seen how patient perspectives can alter the way researchers do their work. She recalled a lab scientist who was so moved by speaking with patients that he vowed never again to throw away unused tissue. Only later did he discover that the frozen samples would prove key to advances in his work.

Tuttle, an intern in Chicago in the 1980s, and other researchers look back on the HIV/AIDS epidemic as a pivotal moment for patient advocacy. Steven Epstein, author of “Impure Science: AIDS, Activism, and the Politics of Knowledge,” recalls how groups such as ACT UP began to use their shared experiences to advance the development of drugs. They challenged investigators who wanted to exclude participants already taking other medications, forcing scientists to work instead with populations that looked more like the real world even if the data from such a study might end up being less clear-cut.

The activists “learned expert knowledge so people took them seriously,” Epstein said, foreshadowing the online advocacy that has developed around long covid. “They had this other kind of experiential knowledge, and then they were able to gain allies among groups of experts.”

By 2012, the government was in on the game, establishing PCORI, or the Patient-Centered Outcomes Research Institute, an independent nonprofit, under the Affordable Care Act that calls for all stakeholders, including patients, to be involved throughout the research process.

Then along came covid — and long covid.

Pandemic restrictions precipitated a new “all-hands-on-deck approach” to research, recalled Tuttle, with scientists turning to couriers to deliver study drugs and patients collecting samples and monitoring their symptoms at home.

At the same time, the virus threw up a series of surprises, from the breadth of symptoms it produced to the growing awareness that some patients didn’t fully recover or developed new symptoms — like Fisher.

Without a long covid medical playbook to fall back on, Cindy Ivanhoe, a specialist in neurological rehabilitation at UTHealth Houston/TIRR Memorial Hermann who oversees Fisher’s treatment, said she had to draw on her experience with a condition with which she was already familiar: dysautonomia, or the dysfunction of the nerves regulating involuntary functions such as heart rate, blood pressure and sweating.

From the researcher’s point of view, that very lack of accumulated medical science has created new possibilities.

“There were no specialists,” said Harlan Krumholz, a cardiologist at Yale who has long believed in empowering patients in the research process. “The people who had the wisdom [about long covid] were the people experiencing it.” And that Krumholz, said “opened a lot of people’s eyes to a different way of doing research.”

Research is often impaired by patients dropping out of studies or not following the scientists’ protocols closely, Krumholz said. And who better to come up with research questions than the people who have a vested interest in finding a cure? Who better understands the challenges of showing up to submit samples? And who is better equipped to disseminate the results of a study than a group of fellow sufferers?

Krumholz and his wife, Leslie, are using a for-profit platform they developed to test the patient-first philosophy, using technology to gather data from patients.

Hugo Health allows patients to link health-related data from electronic health records, their pharmacy and smartwatch, while promising not to share the data unless patients give permission. The first Hugo study in 2016 examined readmission and emergency department use after a patient was discharged from hospital.

The platform is hosting a covid-specific community, Kindred, where patients can get peer support and expert information as well as answering surveys and polls, closing the gap between real-time patient experience and academic research. Harlan Krumholz and his Yale colleague immunologist Akiko Iwasaki plan to launch a study using data from the community to link people with similar symptom patterns with potential biological mechanisms, such as evidence of lingering virus in the body or changes in how the immune system is functioning.

Iwasaki collaborated with Survivor Corps for a previous study, drawing on the group’s membership to help with enrollment for a study that examines how vaccines might improve the symptoms of long covid.

The approach contrasts with work at the National Institutes of Health, which more than a year ago received $1.15 billion from Congress to launch a four-year initiative to identify its causes.

The RECOVER initiative is composed largely of epidemiological and observational trials, enrolling tens of thousands of patients from all 50 states, as well as people who were not infected to serve as comparison.

“It will be a national treasure once it’s assembled,” said Bruce Levy, principal investigator of one part of the initiative, the Greater Boston COVID Recovery Cohort. “But it’s not really structured for quick answers, that’s for sure.”

The project does take a patient-driven approach, Levy said, putting an emphasis on including diverse patient groups. Levy, who described the support of patient advocacy groups as “extremely helpful, ” said their loud voices can sometimes drown out those less versed in online support groups. “Black and brown communities don’t have the same level of advocacy,” he said.

The scope of the NIH initiative goes beyond long covid, according to Walter Koroshetz, director of NIH’s National Institute of Neurological Disorders and Stroke and RECOVER’s co-chair. “It’s a ‘how do you get to the moon’ type of project,” he said, aimed at also understanding post-viral conditions such as chronic fatigue, or ME/CFS, that have mystified scientists for decades. “If there’s a quick answer and somebody from any country would get that answer it would be great,” he said.

But NIH’s sweeping ambition frustrates some physicians as well as patient advocates: What was the gold standard for collecting data on, say, heart attacks, which went through decades of research before clinicians came up with the best treatment, is poorly suited to a widespread emergency, they say.

“With heart disease, it wasn’t as if every 50-year-old had heart attacks,” said Kavita Patel, a primary care physician and health policy expert. “The difference this time is we have never had an entire globe suffering this much morbidity and devastation.”

Berrent believes that long covid will change how research is done. “Once you’ve seen science move at warp speed, you’ll never go back,” she said.

She and Fisher are now listed along with fellow members of Survivor Corps and Yale and University of Pennsylvania researchers as co-authors of study that has not yet been peer reviewed on tremors among people with long covid.

Using information from Survivor Corps’ approximately 200,000 members, the researchers were able to identify common themes in their descriptions of their symptoms as well as the responses from medical professionals.

Fisher never thought she would co-author a scientific study. But there’s little about the last two years that she could have anticipated.

“I came to terms with being a guinea pig when I was in hospital. It was a joke, and I came to realize it was not an actual joke,” Fisher said. “The way I get through it is: This will help others.”

By that, she means other people beyond the long covid community who will stand to gain from patient-centered research.

“I don’t think this is just trending; this is transforming,” Fisher said.

Today's Pix

click

Today's Tweet

Unfortunately, in the era of Poe, I can't automatically dismiss this as a joke, and assume that not even Hershel Walker's that dumb.

Herschel Walker: “I was valedictorian at Lauren Boebert High School.”

— Hoodlum 🇺🇸 (@NotHoodlum) April 1, 2022

COVID-19 Update

There really is something wrong with Americans.

WaPo: (pay wall)

Kids’ mental health is getting worse. But that predated the pandemic.

New data from the Centers for Disease Control and Prevention paint a stark picture of high school students’ mental health during the coronavirus pandemic: As of the first half of 2021, 44 percent report persistent feelings of sadness and hopelessness, nearly 20 percent report seriously considering suicide in the previous 12 months, and 9 percent report having attempted suicide. All those numbers have increased.

It’s pretty evident that we’re seeing what many advocates have labeled a mental health crisis among children. But how much that stems from the pandemic, specifically, is less clear.

In their reports on the new data, both the CDC and some media outlets play up the pandemic’s role.

“Emerging data suggest that the COVID-19 pandemic has negatively affected the mental health of many children and adolescents,” begins the CDC’s Morbidity and Mortality Weekly Report, which focuses on the new Adolescent Behaviors and Experiences Survey.

Various headlines have also made this connection. “More High Schoolers Felt Hopeless Or Suicidal During Pandemic As Mental Health Crisis Intensified, CDC Finds,” Forbes says. “Depression, suicidal thoughts prevalent in high school students during pandemic -U.S. study,” Reuters says.

There is no question the pandemic added stressors to Americans’ lives, including children’s. One would expect that to show up in these data.

But, as The Post’s Moriah Balingit notes, the trend lines suggest that this crisis very much predated the pandemic. Although we’re seeing new highs in these numbers, all three have been rising over the decade before the pandemic. And some key behaviors didn’t accelerate during the pandemic.

The percentage of high-schoolers who said they seriously considered suicide over the previous year went from 13.8 percent in 2009 to 18.8 percent in 2019 — an average increase of 1 percentage point every two years. The rise during the two years between the 2019 and 2021 surveys: 1.1 percentage points.

Reported suicide attempts are similar. The 9 percent of high-schoolers who say they attempted suicide over the previous year is similar to the 2019 number, 8.9 percent. And except for a momentary decrease in the 2017 survey, it has risen with every successive survey. In fact, the increases were greater between 2009 (6.3 percent) and 2015 (8.6 percent) than they are today.

The big exception to these largely steady increases comes in the percentage who say they’ve experienced persistent sadness and hopelessness. Not only has this risen since 2009, but it has also accelerated in recent years.

The increase of 7.5 points from 2019 to 2021 is the largest in any two-year span. But this, too, appeared to be accelerating before that period. It flattened at 29.9 percent in 2015 before rising 1.6 points from 2015 to 2017 and then 5.2 points between 2017 and 2019 — by far the biggest increase, until the period we’re talking about now.

None of this is to deny that the pandemic had some negative impact. But when it comes to confronting the problem, it’s important to isolate the driving factors. The data suggest that these problems were already getting significantly worse before the pandemic — and it would follow that these problems might not be alleviated much — if at all — as the pandemic’s presence fades in our lives. (This also bears on claims attributing declines in mental health to things like mask mandates.)

The new data follow on previously released data that showed the feared rise in suicides (for all ages) didn’t materialize during 2020. In fact, suicide rates dropped slightly. As STAT News’s Craig Bryan surmised, that could be because people pull together during a time of crisis. The new data would seem to bolster that theory: Feelings of sadness and hopelessness increased, both in percentage and in the rate of change — but the most serious expressions of such hopelessness didn’t accelerate.

Another factor to consider is what might have happened in the period after these data were collected. This survey is from early 2021, and it covers feelings and behavior from the previous 12 months — i.e., a period mostly spanning 2020 and some early months of 2021. This period covered the bulk of school closures and other strict mitigation measures. But the prolonged nature of the pandemic could also be a factor in future data.

Some Good News

Justin King - Beau Of The Fifth Column

If we stay on track, we can keep the Climate Change damage to a minimum.

Today's Tweet

I thought Steve McQueen killed this thing.

A robot made of magnetic slime could be deployed inside the body to perform tasks such as retrieving objects swallowed by accident.https://t.co/EYpnx56vNO pic.twitter.com/zA3hMO80xQ

— New Scientist (@newscientist) March 31, 2022

What Happened To Russia?

Short answer:

Not much really - they changed the name on the shingle, but it's pretty much the same Russia, new day.

The New Yorker - The Psychology Of An Isolated Russia

David Remnick and Steve Kotkin

Not the most encouraging ending I've ever heard. Still with that fucking "off ramp" thing.