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STAT News: 'Chronic fatigue patients fight back'

'Patients with ME/CFS — myalgic encephalomyelitis/chronic fatigue syndrome — know the depths of medical neglect. It is a disease without FDA-approved therapies, and with historically little federal investment in research. “It's kind of like you're just on your own to figure it out,” said Elizabeth Ansell, who founded the group #NotJustFatigue and has been bedbound for 9 years. Still, ME/CFS groups like Ansell’s are fighting back against Trump administration cuts, which eliminated one of the few remaining research centers for the condition at Columbia University.

The groups have written a letter to Kennedy protesting the funding cuts, met with congressional offices, and on Thursday issued a report on the economic impacts of ME/CFS.'
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The link here links to an archive version of an article titled "FDA eyes additional Covid vaccine trials, as WHO suggests no update to Covid shot".
 
New York Times, Guest Opinion Essay: '13 Ways to Save Health and Science'

9. Support patient-led research.

Fiona Lowenstein, writer, editor and founder of Body Politic: When health agencies fracture, we shouldn’t forget the power of patients. Early in the Covid-19 pandemic, a strained health care system and confusing messages left those of us developing long Covid without guidance. So we built our own resources and infrastructure. The Body Politic Covid-19 support group grew to over 14,000 members in over 30 countries — a space for support and patient-led research, including surveys of our experiences and symptoms. The work helped secure recognition that our illness is real, leading to updated C.D.C. symptom lists, funding for N.I.H. research and the creation of long Covid clinics. Peer-to-peer support is always important, but it becomes vital during new disease outbreaks.
 
Johns Hopkins: 'One Woman’s Fight for Recovery Highlights Urgent Need for Long COVID Research'

"Dr. Azola diagnosed her with Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—conditions now increasingly associated with Long COVID. Since then, Shalisha has received comprehensive care and, just as importantly, hope. She has participated in several clinical research studies at Johns Hopkins to help others still searching for answers.

Shalisha’s story is one of resilience—but also a call to action.

Long COVID is not rare. It is not temporary. And for millions, it is disabling. Research is the only path forward.

At Johns Hopkins, clinician-scientists like Dr. Azola are uncovering the underlying biology, testing treatments, and reshaping how the world understands post-viral illness. Every patient like Shalisha is not just receiving care—they’re contributing to discoveries that will save lives."
 
Bulletin of Atomic Scientists: 'The impact of DOGE’s funding cuts on biomedical research, from the point of view of former NIH director Monica Bertagnolli'

Bertagnolli: 'The whole issue of COVID was complicated, and there were so many reasons why it was—and still is—an incredibly difficult episode for us in this country. And there’s still big parts of the COVID pandemic that are lingering. Long COVID remains a serious problem that we haven’t solved—though we’ve learned a lot, we’ve got a lot more to learn."
 
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5/20/25, American Neurological Association: 'ANA Investigates Myalgic Encephalomyelitis in the Age of Long COVID'

'The emergence of the syndrome known as long COVID has brought new attention to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)'

In this episode, we explore the advances in science that may soon lead to answers.

Guests: Drs. Sonya Marshall-Gradisnik & Kiran Thapaliya from the National Centre for Neuroimmunology & Emerging Diseases (NCNED), Griffith University

Interviewer/Producer: Dr. Megan Richie, UCSF
 
Yale Global Health Review: 'A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles'

By Violet Affleck

'The phenomenon known as Long COVID poses a threat to even the healthiest individuals, with one of the largest studies finding that a quarter of young, fit Marines were impacted. At present, at least ten percent of infections are understood to result in Long COVID..'

'Arguably worst of all, though, some half (half!) of Long COVID cases trigger myalgic encephalomyelitis (ME). The hallmark symptom of ME is post-exertional malaise, or PEM, a kind of bodily overdraft fee that hits when people with ME expend energy beyond the slim “energy envelope” available to them..'
 
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(8 minute video ft. Dr. Janko Nikolich of Univ. of Arizona, RECOVER PI, along with several patient testimonies)

Arizona Illustrated: 'The Long Shadow of COVID'

'Faced with a frustrating array of over 200 potential symptoms, many individuals endure a slow and challenging path to understanding their condition. Yet, amidst this uncertainty, the scientific community is making promising strides towards illuminating the biological mechanisms of this persistent illness, offering a beacon of hope for those yearning for relief and recovery.'

Nikolich: "It is really a national economic issue and a national security issue..these people, not only are not imagining that this is happening, they need help. It is really in the interest of all of us to provide it."
 
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Science: 'What does the new FDA framework mean for the future of COVID-19 vaccines in the U.S.?'

'Will people with Long Covid be able to get boosters?'

'Neither Long Covid, a chronic illness from a COVID-19 infection, nor the related condition myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is included on Makary and Prasad’s list of underlying conditions that increase the risk of severe COVID-19. That means it may be difficult for some Long Covid patients who do want a new booster to receive it based on that diagnosis alone.'

'Still, several conditions listed as part of the new framework’s risk assessment criteria, including mood disorders and “physical inactivity,” frequently appear in people with Long Covid and ME/CFS, so many may still be able to be vaccinated.'

'...Überla says. “We do know that the vaccine protects against Long Covid, but whether the fifth booster makes any difference is unclear,” he says.'
 
KSTP: 'Long COVID patients urged to enroll in U of M clinical trial'

'The University of Minnesota is one of a few colleges participating in the nationwide study “Reverse LC,” to see if the FDA-approved drug Baricitinib'

“I can’t, you know, walk, or drive, or cook, or clean, or go out for dinner. I can barely leave the house because of the fatigue.”

Three other universities, including Vanderbilt University Medical Center, are enrolling or plan to enroll patients soon.

“The trial is specifically enrolling individuals who had neurocognitive deficits develop after they were infected with SARS-CoV-2,” Bramante said.

Her goal is to enroll 135 people and conduct the trial in smaller “batches” over the next couple of years.
 
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5/19/25, Minnesota Department of Health: 'Long COVID and Other Post-viral infection Associated Chronic Conditions: Program Overview'

The Minnesota Public Health Response

'The Minnesota Department of Health (MDH) is leading efforts in Minnesota to convene, coordinate, and build public health, health system, and community capacity to support the more than 375,000 children and adults who have ever or are currently experiencing long COVID and other post-viral infection associated chronic conditions (IACC). Post-viral IACCs are lingering symptoms, particularly severe fatigue, that persist after recovering from a viral infection, and can significantly impact daily life. These are leading causes of new disabilities. In a 2023 survey, 66% of Minnesotans experiencing at least one long COVID symptom reported difficulty with at least one daily activity.'
 
Evanston resident Rebecca Groble greets Mayor Daniel Biss before she spoke to City Council about her 26-year-old son, Gabriel Hull, who has been bed bound with severe chronic fatigue syndrome for six years. Gabriel was a college student when he contracted the disease, also called myalgic encephalomyelitis. “His mind is fine, but he’s trapped in a body that doesn’t work,” she told the council. Major research funding has been halted by the Trump administration, Groble said. “Raising awareness of its impact and the need for research and funding is my cause, but my son Gabriel is my reason.” Said Biss: “I would just ask the council and those in the public to join me in recognizing Rebecca and thanking her for her advocacy.”
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https://evanstonroundtable.com/2025/05/28/at-this-time-for-her-son/
 
Healio: '‘Evidence-based and ethically sound’ definition of long COVID still ‘too sensitive’'

ME/CFS ‘eerily similar’ to long COVID

“ME/CFS shares overlapping symptoms with long COVID, such as profound fatigue, post-exertional malaise and cognitive dysfunction,” Fineberg said.

This overlap has historical context, according to Peluso.

“If you read early accounts of ME/CFS outbreaks from the 1980s, the clinical descriptions are eerily similar to what we were seeing in March 2020 to June 2020,” he said. “The challenge has been that most cases of IACCs before long COVID are sporadic and have been challenging to study at scale.”

The circumstances of the COVID-19 pandemic were unique in that nearly the entire global population was simultaneously at risk for SARS-CoV-2 infection, Peluso added.

“Many infections were confirmed through widely available testing, and there was a broad awareness of the post-acute condition from early on due to patients sharing their experiences on popular and social media,” he said.

The question, though, is what this means for patients with either long COVID or ME/CFS, or both.

“It means that studying one of the conditions is expected to potentially be of benefit in understanding the other,” Peluso said. “It means that there is probably some shared biology of these conditions, and that if we identify treatments for one there will be a strong rationale to test them for others. It also provides a strong argument against the skeptics and those who engage in medical gaslighting.

“These conditions are real and with the right resources we should be able to figure them out,” he added.
 
National Academy of Medicine: 'Dr. Betty Diamond on Scientific Progress, Patient Experience & Expanding Research on Chronic Lyme Disease'

'Another important point the report makes is that Lyme IACI isn’t alone. There are other post-infectious conditions like it — Long COVID, for example — where people simply don’t fully recover. Many of the symptoms are similar: fatigue, pain, brain fog. The report argues that we don’t have to wait until we fully understand the biology before we act. We can begin conducting well-designed clinical trials now to address some of the most debilitating symptoms.'

'I think COVID affected so many people. It’s probably hard to find someone who didn’t get it. So now, nearly everyone knows someone with Long COVID. And when that person is someone you know well — someone who’s honest, doesn’t complain unnecessarily, enjoys their work and hobbies, and suddenly can’t do those things anymore — it forces you to see that this is real.

Long COVID has changed how we think. I’ve also worked on the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome, and the same challenges apply there.'

As we learn more about the pathogenesis of this disease, we’ll move from managing symptoms — which is where clinical trials can start today — to actually trying to interrupt or slow down the disease process itself.'
 
6/2/25 - Conversations on Health Care: '400 Million+ People Globally With Long COVID: A Top Researcher Seeks Solutions'

'Dr. Igor Koralnik, the co-director of Northwestern Medicine’s Comprehensive COVID-19 Center, is one of the world’s leading Long COVID researchers.

I the second part of our two-part series on Long COVID, Dr. Koralnik explains how patients who have experienced more episodes of COVID are at a higher risk of developing Long COVID. He explains that his work includes investigating potential causes such as viral persistence, autoimmune responses, and microvascular changes. His clinic also supports patients through regular virtual support groups that provide education and emotional care.'
 
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