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WBEZ Chicago (NPR station): 'How long COVID patients are faring five years after the pandemic shut down Illinois'

Reset checks in with researchers, long-haulers and advocates of people living with long COVID to talk about what we do and do not know about the chronic condition and how the community stays informed and supported.

GUESTS: Dr. Jerry Krishnan, professor of medicine and public health at the University of Illinois Chicago

Amy Pope, long COVID patient and patient researcher

Chimére L. Sweeney, long COVID patient and director of the Black Long COVID Experience

Mike Bielaczyc, a lung transplant social worker and long-hauler support group leader at Northwestern University

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Krishnan: "there's something called post-exertional malaise...relatively minor amount of either mental or physical exertion...just completely drains you...makes you feel sick...you just feel totally wiped out..I would also add brain fog. Difficulty concentrating...their heart is racing, something that is related to your autonomic nervous system..."

Krishnan: "The good news is that none of the Long COVID research studies that we're a part of - part of RECOVER Initiative - have been cut, in fact there have been funding allocated to expand the number of clinical trials for Long COVID...there is a lot of planning underway to expand the number of clinical trials..we know that Long COVID is not one disease. We need to understand more about the mechanisms. We need treatments specific to Long COVID. I'm really excited about the National Institutes of Health, has really put a commitment to moving forward with clinical trials and really expanding the number of clinical trials, so I think there's a really bright future there...we have to draw what we've learned from the HIV pandemic."

Host: "Is funding under threat from the Trump Administration?"

Krishnan: "...the good news is that both Secretary Kennedy & the NIH Director nominee Bhattacharya have said publicly they support Long COVID & clinical trials...these give me hope that we're moving forward with Long COVID and we look forward to working with the new administration..."
 
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"Do we have a single answer? Not as of yet, and most likely, perhaps we'll have more than one answer," he said.​

FFS, just say 'we don't know, we don't have any good answers at this stage', and leave it at that. Stop prejudicing the process when it has barely got started.
 
PBS: '5 years after it was declared a global pandemic, a look at COVID-19’s impact'

Dr. Ashish Jha: "Yes, I feel like this is something that we just have not made as much progress as we need to. So let's talk about long COVID.

The problem, Geoff, is, we really have not figured out what is long COVID. It's probably not one condition. It's probably one of two or three different conditions. And NIH, I think, has not done enough to test out treatments for these populations to really understand what we can do to help them get better."
 
I'm not sure this article has anything new to add to the discussion about Long Covid, so it might not be worth keeping.

Title : 5 years later, long Covid is still a medical mystery: What scientists have learned

Subtitle : Why do some people develop disabling chronic conditions after the initial viral infection?

Link : https://www.nbcnews.com/health/heal...medical-mystery-scientists-learned-rcna195608

Publication date : March 11, 2025 / Updated March 11, 2025

Author : Katie Camero

When her school closed down in March 2020, Chimére Sweeney, an English teacher in Baltimore, thought she’d return to her students once the U.S. got a handle on the new SARS-CoV-2 virus. But “life had a different plan” when she got Covid shortly after — and then never recovered, she said.

At first, Sweeney developed only muscle aches. By the second week, she started having panic attacks, blurry vision, constipation and partial hearing loss. Half of her face would freeze “like concrete.” She forgot phone numbers and addresses and she developed a stutter. Within a month after getting infected, she lost 30 pounds.

“I was told that after two weeks I would be better,” Sweeney, now 42, said. “But my two weeks never came.”

Almost five years later, she’s still struggling with severe whole body pain, sleeplessness, depression, painful rashes and boils, uncontrollable urination, short-term memory loss, and irregular periods.

“I went from being a healthy 37-year-old woman who may have had to pop an allergy pill every now and again, to taking over 10 to 12 medications per day to control almost every system in my body,” Sweeney said.
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Long Covid is known to cause over 200 different symptoms in nearly a dozen organ systems, including those of the heart, lungs, kidneys, brain, eyes and skin, but there’s no approved test for it or recommended treatment. Research shows long Covid is more common in middle-aged people, particularly women and those with weakened immune systems, but anyone who catches the virus can get it.
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ME/CFS gets a mention, and there’s some talk of treatments:

SARS-CoV-2, which causes Covid, isn’t the only virus that causes lingering symptoms. Another condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which shares many similarities with long Covid, is thought to be triggered by infections with the Epstein-Barr, influenza and varicella-zoster viruses, among others.

(…)

Most clinical trials are testing whether drugs used to treat other conditions prove helpful for long Covid. Researchers at the University of British Columbia, for example, are looking into low-dose naltrexone — a medication approved for opioid and alcohol use disorder. The drug is thought to have anti-inflammatory and pain-relieving properties, and is used off-label in people with fibromyalgia and ME/CFS, so it carries potential as a long Covid treatment, Brode said.

Other drugs like baricitinib, which is approved to treat rheumatoid arthritis and acute Covid, and temelimab, an experimental drug often given to people with multiple sclerosis, are also being investigated as potential long Covid treatments.

In lieu of specific treatments, people with long Covid must balance their rest and activity in a strategy called pacing, Brode said, and receive physical and cognitive behavioral therapy for further support. More often than not, many people end up relying on several drugs, including the antiviral Paxlovid, to treat symptoms.
 
Dakota15 said:
Sharing this very long feature, if anyone has any thoughts feel free to share

Men's Health: 'The Doctor, the Biohacker, and the Quest to Treat Their Long COVID'
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Thanks for keeping up with all those news. There's quite a lot lately with the 5 year mark. None good news, though. :(

That one's a pretty good feature. I read it quickly and it's more general public but very relatable about the human impact, which remains so, so superior to what comes out of medicine.
 
(Podcast, several ME mentions) 3/12/25, Ologies with Alie Ward: “Post-Viral Epidemiology (Long COVID) Part 1 with Wes Ely”

Ely: “So now we just have millions of people with this problem societally and as a whole globally.”

“And the main two theories of long COVID, it's probably a little of both ends, but in fact, we just published a paper two days ago on viral persistence, which is one leading theory.

But the other one is not just that the virus is still hanging around causing problems, but that while it was here, it did something to activate the immune system, which may need immune modulation down the line for therapies to dampen down and either turn off or turn down the disease state of long COVID.”

“Yesterday, I went to the home of a young woman who was suffering from long COVID, a teenager, and she knows that I have permission to share her story as well. I met with her in her bedroom with her mother, and she said that she will go out of her bedroom one day in a week, perhaps. Has been in that bedroom, bedbound, as she said, for over a year, and has had to drop out of school, and has no hope. I was trying to build hope for her, and I want these people to never lose hope because we're not going to stop until we get answers for them.”

“But that's what they're suffering from, is this massive amount of PEM, or post-exertional malaise, or like the first patient I told you, tremendous cognitive difficulties, even at a young, very otherwise brilliant mind, life changing.”

“…post-exertional malaise, which we think probably is related to mitochondrial injury…”

FYI on podcast: "Alie Ward is a Daytime Emmy Award-winning science correspondent for CBS’s "The Henry Ford's Innovation Nation with Mo Rocca,” and host of “Did I Mention Invention?” on the CW. She hosts "Ologies," a comedic science show named one of Time Magazine’s top 50 podcasts."
 
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Dakota15 said:
Cleveland 19: 'Long-illness patients benefitting from lessons learned after COVID'

'Five years later post-viral syndromes are being treated more effectively thanks to progress made after the pandemic.'
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Sigh
They’re applying changes to diet, low dose medications, herbal remedies, probiotics, physical therapy and histamine management.

“There’s a practice for energy management called pacing that comes out of the chronic fatigue syndrome community where people take preemptive rest through out their day, no naps, but little breaks and it can make a huge difference in how much battery a person has and whether they’re having crashes and symptom flares,” said Miller.
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This is the attitude that needs to be crushed. It corrupts everything. This mindless "we're doing better, we learned, we changed!" even as they do nothing different, nothing good, nothing effective, nothing professional. The very best they can boast of is accepting the ineffective enduring misery that the patient community built in the first place, and medicine rejected for decades. Basically labeling treading water as equivalent to being back on solid ground, even as most keep drowning. The entire point of controversy over pacing vs pushing.

And it's not commonly happening. In fact it still rarely happens. None of it is any effective, at best it's happening something like 10-20% more than before. So it is happening more, but it's no more effective, because they still have contributed nothing of their own.

That's not progress. Pretending that this is progress is why we never have progress. They get comfortable failing and can't ever think of doing things any differently than the same old loser mentality they always apply here. This message gets amplified and people hear "oh, they got this under control now", when the very best that they have is slowly integrating things we knew 4 decades ago and the medical profession suppressed and opposed. Pathetic.
 
An article in New Scientist called "Fight the Fatigue" that briefly mentions ME/CFS. It's somewhat muddled in places but thought it worth posting due to the commentary on GDF15, which has been postulated to be involved in ME/CFS; Picard's work on it might be worth a look.

new_scientist_mar25_1.jpg new_scientist_mar25_2.jpg new_scientist_mar25_3.jpg
 
KCRW: 'Long COVID: Much yet to learn 5 years after pandemic'

'Dr. Nisha Viswanathan, director of the UCLA Long COVID Clinic, says even though the original virus is less worrisome than it once was, long COVID is creating a lasting public health crisis.'

"Yet, no approved medications or treatment options exist for those diagnosed with long COVID. But Viswanathan says researchers and doctors have used information from other post-viral syndromes to successfully offer patients care."

“A lot of our understanding of how to treat, for example, the fatigue or brain fog in long COVID is informed by the research done on patients with myalgic encephalomyelitis/chronic fatigue syndrome,” Viswanathan says.
 
Austin American-Stateman: 'Yes, Long COVID survivors are still out here. And we need your compassion'

'At age 22, my world came crashing down as I succumbed to a wave of crippling symptoms that took me from a healthy, able-bodied young woman to someone with moderate disability over the course of several weeks. I suffered from extreme fatigue, shortness of breath, large fluctuations in my heart rate, severe nausea, weight loss, panic attacks, brain fog and exercise intolerance. Even doing something as simple as walking to another room, taking a shower or doing some computer work could worsen my symptoms and leave me wiped out in bed for days.'

'Despite its surging prevalence, many people have never heard of Long COVID. Due to a combination of public ignorance, political controversy and lack of medical research funding, most people who say they have Long COVID are met with a blank stare.

Societal misunderstanding and lack of awareness can feel like a final punch in the longest match of their life.

“When I had cancer, I was called a fighter and a survivor. But with Long COVID, it’s the opposite,” said Kohler. “Suddenly, I’m met with skepticism or dismissal.”
 
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