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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
 
Bangor Daily News: '5 years and trillions of dollars later, we’re still unaware of the full extent of COVID'

'There is hope. Maine legislators will soon be asked to consider LR 2135 , a bill sponsored by Rep. Ambureen Rana that urges providers to seek continuing medical education focused on infection-associated chronic conditions like Long COVID and Lyme. LR 2135 could be life changing for patients and providers alike.'

'During this Long COVID Awareness Month, I implore all Mainers to consider not only the devastation wrought by this condition but also look to the hope and change that could be brought by supporting greater awareness of this and similar conditions.'
 
Previous post about Virax Biolabs:
Dakota15 said:
Contagion: 'Detecting T Cell Dysfunction in Post-Acute Infection Syndromes'

'At IDWeek, Nigel McCracken, PhD, COO of Virax Biolabs, discussed their work on developing a diagnostic test for early detection of T cell dysfunction in post-acute infection syndromes like Long COVID, chronic fatigue syndrome, and Lyme disease.'

[...]
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New press releases:

'Virax Biolabs Presents Data on T-Cell Dysfunction in Post-acute Infection Syndromes at the 19th World Immune Regulation Meeting'
LONDON, March 13, 2025 /PRNewswire/ -- Virax Biolabs Group Limited ("Virax" or the "Company") (Nasdaq: VRAX), an innovative biotechnology company focused on the detection of immune responses and diagnosis of viral diseases, today announced it has presented data evaluating the role of T-Cell dysfunction in post-acute infection syndromes (PAIS) at the World Immune Regulation Meeting (WIRM) in Davos, Switzerland.

PAISs are often associated with a dysfunction of the immune system, notably progressive T-Cell exhaustion. Chronic antigen stimulation following a chronic infection can cause upregulation of T-Cell exhaustion markers. Data demonstrated that repeated stimulation of peripheral blood mononuclear cells (PBMCs) with SARS-CoV-2 and CMV peptide pools increases the proportion of CD4⁺ and CD8⁺ T-Cells expressing exhaustion markers PD-1, LAG-3, TIGIT, TIM-3, and CD39 with each stimulation cycle. T-Cell exhaustion is well documented to correlate with reduced cytokine production, particularly of pro-inflammatory cytokines, resulting in impaired immune functionality. Additionally, preliminary data from the ViraxImmune™ PAIS assay showed significant changes in the levels of a number of cytokines investigated in patients with PAIS compared to healthy controls.

"This data highlights the critical role of T-Cell exhaustion in immune dysfunction, particularly in PAIS conditions like long COVID, ME/CFS and chronic Lyme disease," said Nigel McCracken, Chief Operating Officer at Virax Biolabs. "In conjunction, we have initiated a number of clinical validation studies to evaluate the performance our T-Cell-based diagnostic in assessing the link between T-Cell dysfunction and symptoms of chronic fatigue and cognitive impairment."

A link to the poster presentation can be found here on the Virax Biolabs corporate website.
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'Virax Biolabs Enrolls First Patients in Clinical Study Assessing T cell Dysfunction in Post-acute Infection Syndromes'
LONDON, March 18, 2025 /PRNewswire/ -- Virax Biolabs Group Limited (NASDAQ: VRAX) ("Virax" or the "Company"), an innovative biotechnology company focused on the detection of immune responses and diagnosis of viral diseases, announced today that it has started enrolling patients into its United Kingdom based, multi-center clinical study (NCT06731179).

Conducted in collaboration with the United Kingdom's National Health Service, investigators aim to assess the ViraxImmune™ FluoroSpot T cell assay performance in detecting T cell dysfunction in post-acute infection syndrome patients, including those with long COVID, post-treatment Lyme disease (PTLD), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). As part of the regulatory approval pathway, up to 200 participants will be enrolled into the study, with initial data from this longitudinal assessment expected in Q2 2026.

"There are currently no reliable diagnostics for patients with these conditions associated with post-acute infection syndromes," said James Foster, CEO of Virax Biolabs, "The data generated from this clinical study will provide additional insights into the immune dysregulation in these conditions, enabling us to improve diagnostics and patient care. ViraxImmune™ has the potential to improve the assessment of immune health, ultimately paving the way for earlier treatment intervention and better patient outcomes."
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WGLT: 'Long COVID still mires some in the pandemic'

'Rachel Mesouani contracted COVID-19 early in the pandemic before there were vaccines. Its effects are still with her.'

'Lay recovered but has had it again and spent another month in what the Mayo Clinic calls a Long COVID crash.'

“It's a fatigue that’s hard to even comprehend," Lay said. "I went to the ER, and I could not keep my eyes open to tell the doctor what was happening. It was like dragging yourself out of like muck. The effort just to even say words was like a marathon."

“The most alarming thing I noticed in March was it started getting harder to hold complex logic in my head," she said. "And I'm a software developer, and I've got to hold complex logic in my head. And then after I got sick in August, that skill was almost completely gone."

"If she over-extends, she must lay down because she can’t even hold her head up."
 
3/19, Ologies with Alie Ward: Post-Viral Epidemiology (Long COVID) Part 2 with Wes Ely

Ely: “The brain fog..it’s really neuropsychological impairment. Our NIH-sponsored study, Reverse Long COVID, the funding is there…can we improve brain function..”

“it's a drug called baricitinib, which is already used to treat COVID, can help improve thinking and memory problems and reduce fatigue for people who have Long Covid. And this study is federally funded by the National Institutes of Health for now.”

“I absolutely believe that we can get the brain back, just like we've done with the ICU survivors. I think that this can happen for Long Covid patients too. And so I hope that people don't lose hope.”

“what we think is happening there is…the glial cells are injured. And then when the glial cells are injured, the neurons get injured. I did that analogy of the plants with the soil and the water. And as covered in part one, the non-neuronal glial cells help support and clean up the neurons of the brain. So they're like the soil and the plants are doing the thinking part.

The plant itself can wilt and the neurons themselves can die. And when you have that occur, you can lose actual brain tissue. The good thing about this is though, that the brain can come back and we can rehabilitate the brain and the brain cells and neurons can regrow.”

“The drug Metformin, studied by Carolyn Bramante, did have some predictive nature of reducing long Covid. We need more data in that regard. And actually, we have a grant that's being reviewed by the NIH to see if Metformin can be tested in a double-blind, placebo-controlled fashion in patients who have long Covid.”

“I think that it will be years in the making, unfortunately. I think that this is not months away for a treatment protocol to be widespread adopted.”
 
Dakota15 said:
3/19, Ologies with Alie Ward: Post-Viral Epidemiology (Long COVID) Part 2 with Wes Ely
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Highlighting also the interposed 8 minute piece by Dianna Cowern's (PhysicsGirl) husband Kyle from 20:48 to 28:22 [see audio part 2 at this link]. In particular, the ridiculous ER experience where they went due to symptoms indicative of pulmonary embolus. No relevant tests performed but she was subjected to around 60 other tests before she rightly discharged herself "against medical advice". This when she was severely ill. A week later she returned to have presumably a CTPA to confirm the PE and was finally treated appropriately with anticoagulants.

On leaving against medical advice: "you do that and the next time you go to the emergency room the doctors treat you like crap because you're somebody who doesn't listen to them."
 
Massapequa Herald (NY): 'Millions are sick and tired of being sick and tired'

'The long Covid community needs help immediately.'

'Benign-sounding terminology — fatigue, “brain fog,” “post-exertion malaise,” and even the name, long Covid — belie the condition’s severity. Millions of long haulers can’t work or even leave their beds.'

'Last Saturday’s International Long Covid Awareness Day highlighted the disorder’s devastating human toll. Children missing their formative years, and single parents unable to support their families, are just a few examples'

'In a rare show of unity, elected officials from both sides of the aisle, as well as scientists, doctors and policy experts, agree: America is failing the long Covid community.'

'At a January 2024 committee hearing, senators from both parties expressed frustration with federal efforts to find a cure.'

'We hope the new administration, including President Trump and Health and Human Services Secretary Robert F. Kennedy Jr., will take action commensurate with this growing crisis.'
 
WBEZ Chicago: 'One Chicagoan's battle with Long COVID'

'WBEZ’s Araceli Gómez-Aldana talked to one Chicagoan about her battle with Long COVID and what’s been helping'

"...I have to plan everything...living your life with a very short cell phone battery, that constantly needs to be plugged in..."

"...she practices radical resting...folks with Long COVID are very frustrated by the fact that our symptoms are invisible, and so it doesn't necessarily look that we are suffering..."

"there are folks who are bed-bound, home-bound, unable to have access to medical treatment..."

Second report here.
 
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About a 25 min+ interview

13 News Now: 'Interview: Living with long COVID'

'Marta Berglund speaks with Rachel Beale, who has suffered from long COVID since 2021, and is hoping for answers and a cure.'

Beale: "If I'm in a crash...I don't move from the couch or the bed, I can't do anything.."

"I speak up because somebody needs to know about us"

Second report here.
 
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NBC Chicago: '5 years after onset of COVID-19 pandemic, suburban mother remains impacted by long COVID'

'..a Tinley Park mother is speaking out on the continued impact of long COVID. NBC Chicago’s Patrick Fazio reports'

"I couldn't walk to the end of the block.."

Sue had to start using a wheelchair and noticed she lost brain function.

"I'm a calculus teacher and can't count by two's. What is happening here?"

She ended up having to quit her teaching job.

"The more people that can come forward and talk about it, the more help we can hopefully eventually get."
 
Long Covid office 'will be closing', Trump administration announces

The move comes as part of the administration’s reorganization of HHS, according to an internal email seen by POLITICO.

The Trump administration is shuttering HHS’ long Covid office as part of its reorganization, according to an internal email seen by POLITICO.

The email was sent Monday by Ian Simon, the head of the Office of Long Covid Research and Practice. It said the closing is part of the Department of Health and Human Services’ reorganization.
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