News from the USA, United States of America

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.

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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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Rolling Stone: 'Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid'

'We've been discounted for half a decade, still sick from a pandemic the rest of the world would rather forget'

'Everyone with Long Covid — with any chronic condition, really — is grieving. We’re all mourning something, whether that’s our old body or brain, our ability to work or socialize, our financial stability and housing, relationships that are now broken or strained, or simply the person we used to be.'
 
Refinery29: 5 Years Later, Women Are Still Living With Long Covid
Long Covid has affected 6.9% of Americans (as of 2022 data) and 2.9% of British people (as of 2023 data).

Women are far more likely to get long Covid than men, which is another piece of the puzzle we don’t yet have an answer for.

The concrete knowledge stops there — long Covid is still a debilitating diagnosis without a cure or known cause, and there’s no promise of ever recovering. Many people with the condition aren’t believed by healthcare professionals.
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We can’t forget the people still living with long Covid. In fact, some experts argue we’ve already seen what’s happening with long Covid sufferers play out before with another condition, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a long-term condition causing fatigue, brain fog and body aches.

Like long Covid, ME/CFS affects women more than men, doesn’t have a known cause or cure, and patients are often dismissed. The symptoms are similar, if not the same.

Dr Charles Shepherd, from the ME Association, is currently working on the link between these two conditions, seeing where they overlap and how symptom management compares. He’s trying to learn if what we know about ME/CFS can help those with long Covid.

“People are so frustrated, they will try anything and they’ll spend vast amounts of money on all kinds of unproven and highly speculative forms of treatment,” says Shepherd. “There are a lot of people out there promoting this, including clinics — it’s the same with ME/CFS.”

Long Covid clinics across the world popped up in the wake of the pandemic, promising results with unaccredited treatments at a high cost. Forums recommend random products to people who are desperately trying to get well. People arrive at this point because they’ve already been neglected by their first ports of call.

Shepherd says “a lot of doctors don’t know about or recognize these conditions, and researchers aren’t interested in it”. He says it took a long time for the healthcare industry to make the link between the two conditions to begin with. His goal is to make his patients' lives “as good as we can”.
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Note: I added some line breaks to the quotes to make them easier to read.
 
The Sick Times: Half a decade of Long COVID

Over the coming weeks and months, first-wavers around the world will observe five years with Long COVID. Many already have. Others with related diseases like myalgic encephalomyelitis (ME) — who warned us about the long-term effects of pathogens early in the pandemic — have been sick for decades.
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None of our understanding about Long COVID today could exist without people with the disease. We filled out thousands of surveys, showing the disease has more than 200 different symptoms. We gave blood and organ samples to researchers. We informed clinicians on what interventions have moved the needle, leading to important clinical trials. We made life-saving support groups and groundbreaking advocacy organizations. We even set up our own research collaborations that have led to scientific breakthroughs.
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Sharing front page feature today, Minnesota Star Tribune: 'Five years later, long COVID remains a frustrating medical mystery for thousands of Minnesotans'

'..many continue to struggle with work and daily activities after being diagnosed with post-COVID fatigue and other symptoms'

Dr. Amy Engebretson...years later, she still sleeps about half of every day while waiting for answers and hoping for better treatments.'

'Rushing back caused post-exertional malaise, and working harder, she later learned, only sapped more strength'

'A state survey earlier this year showed fatigue is common among Minnesotans with long COVID, along with shortness of breath and brain fog (disrupted memory and focus).'

'An estimated 5% to 50% of long COVID cases progress to an exhausting form of chronic fatigue syndrome known by the acronym ME/CFS. Patients in their prime find themselves struggling to get through their days and are punished if they try to return to old routines too quickly.'

'Recent budget cuts by President Donald Trump’s administration could save taxpayers money but reduce long COVID research, which has advocates concerned. The pace of discovery was too slow before cuts, especially for patients with ME/CFS, who have about a 5% chance of full recovery.."

“We are five years into this health disaster. … Research is not moving fast enough for the millions suffering"

'Research is starting to map out the biological and cellular origins of long COVID, a key step before new drugs..”

Grach said long COVID is at least partly linked to an overreaction by the immune system, which “doesn’t seem to be shutting off in the way that it’s supposed to” after illness. Treatments that moderate the immune system could help, but the Mayo doctor said a combination of causes are probably at work.

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San Diego Union-Tribune: 'El Cajon nurse can’t shake COVID-19’s unrelenting grip: ‘I have lost relationships’'

'New cases of the debilitating syndrome known as long COVID are still being diagnosed daily'

“My last day at work, I caught myself forgetting what I was doing, and I felt like I was on cold medicine, but I wasn’t,” she said. “I developed shortness of breath, a fever, fatigue, extreme bone pain, cough, diarrhea and dizziness.'

'But, eventually, her blood pressure changes in response to elevation changes arrived at POTS, an acronym for a medical condition called postural orthostatic tachycardia syndrome'

'Five years after the pandemic, Baca said, it has begun to feel like the public just is not interested in understanding the syndrome that has so permanently changed her life. While she got sick literally caring for others during a global pandemic, that sacrifice doesn’t seem to count for much these days, especially since her POTS symptoms don’t affect her outward appearance.'

“I have lost relationships with family members and with friends of mine over my condition,” she said.
 
Mercury News: 'Q&A with a researcher fighting long COVID and searching for relief'

'Five years after the pandemic, scientist says clinical trial landscape must expand'

“What we’ve learned is that there seems to be this sort of cliff you can fall off of that we call post exertional malaise,” Vogel said. “If you do too much all at once, you can really exacerbate your symptoms.”

"There are probably 50 trials in the planning stages or early stages for long COVID, and I feel like we’re finally, just this year, starting to make some progress toward understanding treatments. When I first got sick, I thought, ‘OK, I’ll just need to hang on for three to five years, and then we should have some symptom management, but I feel like we’re still at that point where we’re three to five years away."

"I would also work to get the Long COVID Moonshot bill passed, including substantial investment in expanding the clinical trial portfolio so that we can identify effective treatments."
 
The Globe (Worthington, MN): 'Five years later: Long Covid still creating medical mysteries'

'Jolene Wieneke, of rural Adrian, has had acute Covid three times, but it was her first bout with the virus that resulted in her being diagnosed with Long Covid'

'When she received her official Long Covid diagnosis in 2021, Wieneke said it was a diagnosis of dysautonomia, a dysfunction of the autonomic nervous system. She has since been diagnosed with post-exertional malaise as well. Her symptoms included blood pressure instability, dizziness, fatigue, chronic pain, stomach issues, heat intolerance and frequent brain fog, which made it difficult for her to process information.'

Wieneke said she experienced fatigue while battling breast cancer, but it was different from the fatigue she experiences now with Long Covid.

“With Long Covid you do not have the energy to get out of your bed,” she said.

“There are some theories that there’s damage to our mitochondrial DNA so we have damage to our energy conversion,” she said
 
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