News from the USA, United States of America

4/14/25, TEDx Talk: "I Am One of the Millions Missing | Maggie Boxey"

"Do you know one of the millions missing? For those with disabling chronic illnesses, it can feel like they are invisible, watching their lives from a remote distance. In this emotional talk, author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option."

"I first got sick in July of 2020 during the COVID-19 pandemic. At the time I swore it was COVID - my symptoms were neurological, the headaches were excruciating, my skin was on fire with buzzing and severe itching. The fatigue and brain fog were like nothing that I had experienced before. All my labs were normal - my doctors assumed that I would eventually get better as long as I kept pushing and trying harder..."

"...you're probably familiar with Long COVID. It's a chronic disease that occurs after a COVID-19 infection where symptoms are present for three months or more. About half of those with Long COVID meet the diagnostic criteria for ME, so the amount of people with ME in the United States could be more like five to nine million."

"...the hallmark symptom of ME is called PEM or post-exertional malaise. People with ME call this a crash. This means our symptoms worsen after minimal physical or cognitive activity or even with sensory overload.."

 

Stats News 4/15/25: RFK Jr. plans changes to vaccine injury reporting system

The HHS secretary has long questioned the adequacy of the current system

WASHINGTON — Health secretary Robert F. Kennedy Jr. said Tuesday that he plans to roll out changes to the vaccine injury monitoring system that would automate and increase data collection as well as look for negative impacts of the shots.

Reforming the current Vaccine Adverse Event Reporting System has long been part of Kennedy’s agenda to raise questins about the safety of immunizations that are currently in use. While the general idea of improving the system is uncontroversial, Kennedy has exaggerated the extent to which side effects of vaccinations go unrecorded, according to researchers.

 

PolyBio: 'Chan Soon-Shiong Family Foundation donation expands PolyBio Long COVID program'

Funds will support exploration of SARS-CoV-2’s potential to drive cancer, as well as continued work delineating persistence of the virus in long COVID tissue, including therapies to optimally clear persistent virus

 

Psychology Today: 'I'm the Mom, But No One Listened to Me'

'Personal Perspective: My kid got sick. I was dismissed. My voice mattered most.'

'Kids with Long COVID aren't lazy. They're sick.'

'Today, invisible illnesses like long COVID and chronic fatigue are the new frontline in an age-old information war. But in this fight, moms are set up to fail.'

 

Spectrum News 1: 'Leading long COVID researcher fears it could become a national epidemic'

“They go to the doctor, they test and they get told good news, everything tested normal, which is not good news for someone who is feeling as terrible as most people with long COVID feel" - Dr. David Putrino

One of those people was Nicole Lopez-Jantzen, who used to run marathons, and now can barely walk her dog.

“I’m tired right now," she said on a walk with NY1 just across the street from her apartment in Queens. "My energy just goes down, down. And then I have to go lie down.”

"Seventy percent of people with long COVID have something called autonomic dysfunction, meaning that we have a part of our nervous system, this is the part of your nervous system that controls all the things you don’t usually think about that’s under autonomous control," he said.

Someone with long COVID will feel overexerted just from sitting.

"What we saw in people with long COVID is they were burning 20, 30 percent more energy than someone that we would expect for their height, weight, gender and age," he said. "So even though we were asking them to sit very still and not use any energy at all, their bodies were working really, really hard to maintain that."

 

CIDRAP: 'Episode 181: Public Health Policy Is Political' In "Public Health Policy Is Political"

'Chris Dall and Dr. Osterholm discuss the ongoing measles outbreak, the latest round of job cuts in the public health workforce, and new studies on long COVID'

Osterholm: “Other research suggests that muscles of long COVID patients aren't able to extract the proper amount of oxygen from the blood, and that the mitochondria, often referred to as the powerhouse of the cell, may not work at full capacity in long COVID patients, also hindering muscle tissue. All this is why we have so often described long COVID as a complex puzzle, an understatement, with many, many missing pieces. But each study uncovers another piece, helping us get closer to seeing the full picture, and ultimately finding treatments for this condition that have impacted so many lives.”

“We also have more to learn about the cause of circulatory long COVID symptoms, which can include fatigue, shortness of breath, and exercise intolerance. Just as with other long COVID symptoms, researchers believe that the inflammation is a key factor, potentially damaging the nerve fibers in our body that control the squeezing ability of blood vessels, ultimately resulting in reduced blood flow.”

“Finally, I want to say to all our listeners who are struggling with long COVID, we see you, we read all the impactful messages you share with us, and now more than ever, we will continue to advocate for you.”

 

Some screenshots shared in thread below in X from LA County's Long COVID Town Hall event tonight, for any interested in viewing

https://twitter.com/user/status/1913044440878285280


From X: 'Tuning into Los Angeles County Public Health's 'Public Health Virtual Town Hall on Long COVID' tonight'

1-hour recording here:

https://www.youtube.com/watch?v=RfFtmCHtw8Q

 

Source: 132nd Maine State Legislature
H.P. 1123
Dale: April 17, 2025
URL:
https://legislature.maine.gov/legis/bills/getPDF.asp?paper=HP1123&item=1&snum=132


FIRST SPECIAL SESSION-202
-------------------------
An Act to Encourage Continuing Education Relating to Certain
Infection-associated Chronic Conditions for Physicians and Nurses

Reference to the Committee on Health Coverage, Insurance and Financial
Services suggested and ordered printed.

Presented by Representative RANA of Bangor.
Cosponsored by Senator STEWART of Aroostook and Representatives: JULIA
of Waterville, MATHIESON of Kittery, ROEDER of Bangor, Senators: BAILEY
of York, INGWERSEN of York

Be it enacted by the People of the State of Maine as follows:

(...)

Sec. 1. 32 MRSA paragraph 2158 is enacted to read:
Paragraph 2158. Medical education relating to infection-associated
chronic conditions
The board shall encourage a licensee or applicant for relicensure under
this chapter to attend continuing education, including continuing
education required for licensure of an advanced practice registered
nurse, relating to infection-associated chronic conditions, including
long COVID, chronic Lyme disease, myalgic encephalomyelitis, postural
orthostatic tachycardia syndrome and dysautonomia.

(...)


Sec. 2. 32 MRSA paragraph 2581, as amended by PL 2017, c. 189, paragraph
1, is further amended by enacting at the end a new paragraph to read:
The board shall encourage a licensee or applicant for relicensure to
attend continuing education approved by the board under this section
relating to infection-associated chronic conditions, including long
COVID, chronic Lyme disease, myalgic encephalomyelitis, postural
orthostatic tachycardia syndrome and dysautonomia.

(...)

Sec. 3. 32 MRSA paragraph 3280-A, sub-paragraph 5 is enacted to read:
5. Continuing medical education relating to infection-associated
chronic conditions. The board shall encourage a licensee to attend
continuing medical education under subsection 2, paragraph B, relating
to infection-associated chronic conditions, including long COVID,
chronic Lyme disease, myalgic encephalomyelitis, postural orthostatic
tachycardia syndrome and dysautonomia.

(...)


SUMMARY

This bill requires the Board of Osteopathic Licensure, the Board of
Licensure in Medicine and the State Board of Nursing to encourage
licensees and applicants for relicensure to attend continuing education
relating to infection-associated chronic conditions, including long
COVID, chronic Lyme disease, myalgic encephalomyelitis, postural
orthostatic tachycardia syndrome and dysautonomia.

 

Medscape: '5 Long COVID Predictions for 2025 and Beyond'

'As scientists have gained a broader understanding of the nature of long COVID, they and other health experts hope to make strides in treating this debilitating condition'

 

4/21/25 - "Docology with Dr. Howard Zucker - Ian Lipkin interview"

Excerpts from a 40 minute sit-down with Ian Lipkin below

Lipkin: “Myalgic Encephalomyelitis….it is a crippling disorder...the irony is that over the past five years, we've come so close to be able to talk about clinical trials that would help these people...we got some support from the Hutchinson Family Foundation and then more recently from the NIH. Losing that means that I can't do any work because the university won't let me do work on this project because it's not funded anymore and we were told to stop working on the project."

Question from audience: "Can you clarify where the funding status currently sits between Columbia's ME/CFS Center for Solutions and the Trump administration freeze?"

Lipkin: "The answer is we don't know. The communication breakdown has been quite extraordinary. So my institution has a sponsored project administration - tells me that the grant has been terminated, and then when I call my Program Officer at NIH, she tells me that she has no record of that. So, it’s like the right hand doesn’t know what the left hand is doing. What I do know is that I cannot work on that project, with the exception of a piece of it. Fortunately, I have a benefactor, a donor, who is funding one of the people in our group to continue to work on that. And it's really, it's really exciting - I mean, it's been years that we've been trying to get out of the force. And I think we're finally there.

So, I will tell you that what I find the most interesting is that it looks as though there's some sort of a trigger for innate immunity. Innate immunity is sort of the early immune system. It actually precedes things like antibodies, T-cells and NK cells. Any sort of a microbial exposure triggers the innate immune system to activate, and that gives you the problems that you have. Now, with some of these viruses that we think are implicated, they also do direct damage to mitochondria…So Herpes viruses particularly have the ability to fragment these mitochondria inside the cells. So, with this information in hand, we were poised to do a final set of experiments and make some very specific proposals for what the control clinical trials should be. But that's all stopped. So, if anybody here online has any way of breaking through that logjam, please do.

As you know, we don't we don't have diagnostic tests, and we don't have the treatment. This is insane. I think we could. We should."

Question from audience: "Dr. Lipkin, in a Fierce Biotech report it was stated that the Columbia ME/CFS team recently submitted a paper for publication that suggests certain approved drugs could possibly be repurposed for ME - will this publication be visible at some point to the public and community?"

Lipkin: "It will. So, we want to get it into a major periodical, because we think that that's the best way to have an impact, particularly as the drugs we're talking about, we have to convince people to invest in, right? But the answer is, absolutely, we intend to publish that, no question. I'm sorry for the delay."

 

4/22/25, Health Affairs: 'Addressing The Long COVID Quandary'

By Michael S. Sinha & Monica Verduzco-Gutierrez

'As COVID-19 cases continue in the United States, waves of newly disabled people are now fighting for recognition and access to health care, largely on their own. Anthony Fauci, MD, characterized Long COVID as an “insidious” public health emergency affecting millions of people.'

'While Long COVID presents new challenges, its pathophysiology is not entirely novel. Other infection-associated chronic conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, chronic Epstein-Barr virus, and post-treatment Lyme disease syndrome often arise after an infection and present with heterogenous symptoms.'

'With millions of people experiencing post-COVID impairments, the need for a dramatic scale-up of health care services has never been more urgent.'

Proposal: The Long COVID Recover Strong Initiative (LCRSI)

'Following the blueprint of the hugely impactful Ryan White HIV/AIDS Program, a federal Long COVID program is necessary to promote, develop, and enhance comprehensive multidisciplinary Long COVID clinics with clinicians trained in infection-associated chronic care..'

'Like the Ryan White HIV/AIDS program, the Long COVID Recover Strong Initiative (LCRSI) would provide accessible health care services and improve quality of care, particularly for underserved, rural, vulnerable, or minoritized populations who are disproportionately impacted by Long COVID.'

'Long COVID remains a major public health issue that demands urgent attention'

 

The Ice Bucket Challenge worked. Why not try it again?

The trend that dominated social media a decade ago — and raised millions for A.L.S. research — has been reborn as a vehicle to raise mental health awareness.

https://www.nytimes.com/2025/04/22/...e_code=1.B08.1b0F.Kp8VHLifCuNT&smid=url-share

 

Northwestern: 'Post-treatment Lyme disease syndrome may be driven by remnants of infection'

'Researchers learn why the body may continue to respond to an invisible threat long after bacterial death'

'Lyme’s post-infection features share some similarities to long COVID-19 and could be due to lingering antigens'

'This matches one theory behind the underlying causes of long COVID-19 in that persisting viral molecules may encourage a strong, albeit unnecessary, immune response, said bacteriologist Brandon L. Jutras.'

“Lyme and long COVID-19 are clearly vastly different diseases, but it’s possible that they share a more general mechanism of inappropriate inflammation caused by remnants of a previous infection,” said Jutras, who led the research. “The maladaptive response is a product of an infection, but perhaps not necessarily an active one in all cases.”

----

Report from STAT News on study here.

"Proal said it’s possible the antigens are being actively produced by bacteria lingering in hidden reservoirs, as is the case with the SARS-CoV-2 virus in long Covid."

"In both studies, the scientists used mouse models to explore unique chemical components that persist in the roughly 15% of people who don’t recover from Lyme infections and go on to develop a syndrome similar to other infection-associated illnesses, including long Covid. One study tracked antigens among the bacterial remnants that travel to the liver, and the other study screened more than 500 approved antibiotics to find one that may be safer and more effective at a lower dose than standard-of-care doxycycline."

Thread here: Peptidoglycan of Borrelia burgdorferi can persist in discrete tissues and cause systemic responses consistent with chronic illness, McClune et al,2025

 

Western University: 'Global clinical trial to test existing drugs as long COVID treatments'

'Western and Schmidt Initiative for Long Covid will enroll more than 300 patients across four continents’

'The trial, funded by SILC, will examine whether upadacitinib and pirfenidone – approved for treating arthritis and lung disease, respectively – can be repurposed to reduce or eliminate symptoms of long COVID.'

'The drugs were identified by an earlier SILC-funded study that, over the past 18 months, examined over 5,400 blood proteins from 1,028 participants with and without long COVID and found 13 common biological pathways for the progression of the disease. Upadacitinib and pirfenidone were identified using artificial intelligence as two existing drugs that could interrupt several of those pathways.’

'Researchers will track five symptoms – fatigue, breathing issues, memory and thinking problems, muscle and joint aches and circulation – to determine which is most severe in each patient. Researchers will investigate the two drugs versus placebos for the first three months, perform an analysis, and then monitor participants for an additional three months.'

Thread here: Global clinical trial to test existing drugs as long COVID treatments

 

Harvard T.H. Chan School of Public Health: "A long COVID researcher continues to search for answers"

'Beth Stelson, postdoctoral research fellow in the Department of Epidemiology, long COVID researcher, and herself a patient, discusses her research and the ramifications of the office’s closure (HHS Office of Long Covid Research and Practice).'

'We’ve made huge headway in understanding the pathophysiology of how this condition can develop and have uncovered similarities with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia, which are also conditions that are often overlooked in health care'

'I’d like to see more investment in clinical trials to test treatments. We also need to invest in long-term cohorts so we can study patients over time.'

'..it feels like a kick in the gut to have it closed at a time when we have really put long COVID on the map as a condition and as a health care and public health crisis. We need more awareness around long COVID, not less.'

 

(10 minute documentary) 4/26/25, 'Invisible - Life With Long COVID'

'For millions of Americans, the pandemic is not a thing of the past. With limited answers, debilitating consequences, and threats to funding, long COVID continues to hamper the lives..rendering them virtually invisible..'

Produced by: Henry Bova, Lauren Salemo, Renée Nearing

Special thank you to: Jill Fitzgerald, Julie Sullivan, David Systrom, M.D., Ellen Alden and Jody Santos, our instructor

From Producer below (on LinkedIn)

Text: "All semester long, Lauren Salemo, Renee Nearing, and I have been working on a documentary about an issue near and dear to my heart: the plight of long COVID patients. We drove around Massachusetts interviewing doctors, experts, and people who have had their lives upended by the chronic condition to uncover what complicating factors continue to undermine successful treatments, from mysteries about the disease itself to funding threats. I'm proud to say that our 10-minute-long documentary, "INVISIBLE," is now available to watch on YouTube.

The three of us would like to thank all the wonderful people we spoke with: david systrom, Julie Sullivan, Ellen Alden, and Jill Fitzgerald. We would also like to thank our instructor, Jody Santos, who was immeasurably helpful throughout the process, as well as our classmates, who offered well-tuned feedback to help us shape our final cut."