News from the USA, United States of America

[rvallee]

The immunity debt will be paid any time now. Well, it won't, but somehow people stopped talking about it. It was always total BS, and the fact that total BS has dominated almost all discussion of this topic for years, mostly coming from experts, will never be talked about.

I'm not sure if we can deal with the crisis of credibility and integrity in medicine until we deal with the broader crisis of: everyone seems to lie all the time about everything because this is the best way to get ahead in life. They come hand in hand.

 

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In the Fragmented Landscape of Long COVID Care, Pharmacists Are Essential | Pharmacy Times

While long COVID remains a complex disease, pharmacists are critical team members for patient symptom validation, managing polypharmacy, and navigating therapy access.

www.pharmacytimes.com

The expert panel included moderators Zanthia Wiley, MD, associate professor of medicine at Emory University School of Medicine and Michael Peluso, MD, assistant professor at University of California San Francisco. Featured panelists were Marta Cerda, Juris Doctor, CEO of ASI Home Care; Melissa Stockwell, MD, MPH, department of pediatrics at Columbia University Irving Medical Center; and Igho Ofotokun, MD, MSc, FIDSA, Grady distinguished professor of medicine at Emory University School of Medicine.

The Essential Role of Pharmacists in the Fragmented Landscape of Long COVID Care

Understanding Long COVID and Its Complexity
Five years after the start of the COVID-19 pandemic, long COVID has emerged as a persistent and complex condition that continues to challenge patients and healthcare providers. Characterized by a wide range of symptoms—such as brain fog, dizziness, inflammation, and respiratory issues—long COVID lacks a clear, universal definition. Experts at the Infectious Disease Week 2025 conference emphasized the importance of multidisciplinary collaboration to address the condition’s diverse impacts and the fragmented nature of current care systems.

Patient Voices and the Realities of Living with Long COVID
Marta Cerda, a panelist and long COVID patient, shared her personal experiences with multiple systemic symptoms, urging the medical community to recognize and validate patient struggles. She highlighted the emotional toll of being disbelieved and the urgent need for comprehensive care and understanding for millions suffering from long COVID.

Challenges in Pediatric and Adolescent Long COVID
Dr. Melissa Stockwell addressed a major misconception: that children are unlikely to suffer from long COVID. She argued the opposite, citing estimates that 2% to 10% of children may be affected, which translates to millions of cases. Challenges in this area include vague symptoms in children, lack of standardized research protocols, and insufficient clinical trials. The RECOVER-Pediatrics initiative is working to develop tools like age-specific indexes to aid diagnosis and research, but more pediatric-focused studies are urgently needed.

Current Therapeutic Limitations
Dr. Igho Ofotokun discussed the difficulties in developing effective treatments for long COVID due to its varied manifestations and poorly understood mechanisms. Current therapeutic efforts fall into three main categories:

• Antivirals: Trials involving nirmatrelvir-ritonavir (Paxlovid) have shown minimal or no benefit for long COVID patients.
• Immune Modulators: Low-dose naltrexone and GLP-1 receptor agonists are being explored for their potential anti-inflammatory effects.
• Symptomatic Relief: Techniques like stellate ganglion block injections may help alleviate certain neurocognitive and inflammatory symptoms.

Pharmacists as Key Team Members in Long COVID Care
As no single treatment currently exists for long COVID, pharmacists play a vital role in patient care. They help validate patient experiences, manage symptoms, and prevent harmful drug interactions—especially important when patients self-prescribe supplements or medications.

Pharmacists act as accessible healthcare providers who can guide patients toward appropriate specialists, educate parents about pediatric long COVID, and help evaluate complex medication regimens. Their ability to monitor polypharmacy and address drug-drug interactions makes them indispensable in long COVID care teams.

Conclusion
While long COVID research and treatment remain in early and uncertain stages, the involvement of pharmacists provides a critical bridge in care. Their expertise in medication management, patient communication, and symptom control makes them essential members of healthcare teams navigating the ongoing challenges of long COVID.

 

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Traverse City Is Now Home To America's First National Long COVID Treatment Center | The Ticker

The project brings together Dr. Bruce Patterson, formerly of Stanford University and now head of HealthBio, and Dr. Shawn Cole of Celly Health.

HealthBio’s method uses two FDA-approved drugs: maraviroc, typically used for HIV, and atorvastatin, used for high cholesterol.

Traverse City Launches First National Long COVID Treatment Center

A Pioneering Healthcare Collaboration in Northern Michigan

Traverse City, Michigan, is becoming the national hub for long COVID treatment thanks to a new collaboration between Celly Health Medical Group and HealthBio Inc. The new treatment center, based at the Bayview Professional Centre, aims to provide comprehensive, research-based care for the estimated 30 million Americans suffering from long COVID. This condition, recognized by the CDC as symptoms persisting for three months or more after COVID-19 infection, affects roughly 10% of Americans.

The Minds Behind the Mission

The project brings together Dr. Bruce Patterson, formerly of Stanford University and now head of HealthBio, and Dr. Shawn Cole of Celly Health. Patterson moved to northern Michigan in part due to support from local investment firm Boomerang Catapult. His research has focused on diagnosing and treating long COVID using repurposed medications to reduce vascular inflammation.

From Shared Office Space to Shared Mission

Cole and Patterson began collaborating after discovering their offices were in the same building. Cole was drawn to HealthBio’s work, and together they planned the nation’s first dedicated long COVID treatment center. Patterson is also a key member of a national long COVID consortium chaired by U.S. Health Secretary Robert F. Kennedy Jr.

Treatment Strategy and Medication Approach

HealthBio’s method uses two FDA-approved drugs: maraviroc, typically used for HIV, and atorvastatin, used for high cholesterol. This combination has been administered to over 12,000 long COVID patients via telemedicine through the Chronic Inflammation Center, which also treats conditions like Lyme disease. The goal is to target and reduce inflammation caused by lingering protein fragments in immune cells.

Why a Physical Location Matters

While telehealth has proven effective, many patients expressed the need for a physical treatment center where they could receive in-person care and access broader primary care services. Celly Health’s national infrastructure and licensing in all 50 states now make that possible. The Traverse City center fulfills this need while continuing to serve patients remotely.

The Broader Vision and National Impact

Although Traverse City will be the first of its kind, Celly Health is planning additional centers across the country. The typical treatment plan spans 6 to 12 weeks and is well-suited to telehealth, minimizing the need for travel. Patterson hopes the center will not only treat patients but also demonstrate the effectiveness of this approach to federal health agencies.

FDA Trials and the Push for Funding

HealthBio has received approval to begin FDA trials for the drug combination but still requires additional funding to proceed. Patterson says some political momentum is building, noting that among the 12,000 treated patients are members of Congress who are now advocating for NIH funding.

If approved, the treatment could gain widespread acceptance, provide insurance coverage for patients, and offer new hope for millions living with long COVID.

 

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It’s been a month. And we still don’t know much about Kennedy’s Long COVID consortium. - The Sick Times

Preliminary meetings are occurring amid the ongoing government shutdown, while some advocates call for Health Secretary Kennedy’s removal

thesicktimes.org

Key points you should know:

• On September 18, Health Secretary Kennedy convened a Long COVID roundtable event with leading researchers and government officials. The event included commitments to further federal government action to tackle this disease.
  
• One month later, we don’t know much about Kennedy’s promised Long COVID consortium, such as who is involved, what its goals might be, and further funding that may be available.
  
• Researchers who attended the roundtable event and Senator Todd Young said some meetings are happening behind the scenes to determine next steps for the consortium and other initiatives, but the government shutdown has caused delays.
  
• Meanwhile, some Long COVID advocates are rejecting Kennedy and calling for his resignation, in a letter to Senators.

 

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Yale Podcast:​

Akiko Iwasaki: What Have We Learned About Long COVID?​

Akiko Iwasaki: What Have We Learned About Long COVID?

Howie and Harlan are joined by Yale School of Medicine immunologist Akiko Iwasaki, a leading authority on vaccines and long COVID. Harlan reflects on America’s crisis of trust in federal agencies; Howie provides some good news about bird flu.

insights.som.yale.edu

Longer AI summary with timestamps (mmss):

0000-0033: The podcast "Health and Veritas" is hosted by Harlan Krumholtz and Howie Foreman, physicians and professors at Yale University, aiming to explore health and healthcare truths. Their guest is Dr. Akiko Iwasaki, a renowned immunobiologist and expert on COVID-19 and long COVID.[1]

0037-0138: The hosts discuss current health topics including mental health concerns globally and in the U.S., the impact of political tensions, government shutdowns, food insecurity for federal workers, and declining public trust in major health agencies like the CDC and FDA, which are rated at historic lows of around 31% and 27% trust respectively. The Post Office and Department of Defense have the highest trust. There is also mention of a measles outbreak in South Carolina with vaccination rates as low as 17% in some schools.[1]

0745-0918: Dr. Akiko Iwasaki is introduced formally as Sterling Professor at Yale and Director of the Center for Infection and Immunity. Her research focuses on immune defense against mucosal viruses and vaccine development. Since the COVID pandemic, she has advanced understanding of COVID-19, long COVID, and treatments, advocating for women in science. She previously appeared on the podcast during the Omicron wave in early 2022.[1]

0926-1154: Iwasaki discusses progress on long COVID research over the past two years, focusing on several hypotheses: persistent virus infection, autoimmunity triggered by infection, reactivation of latent herpes viruses, and lasting tissue damage and inflammation. These mechanisms may vary by patient and understanding the root cause is key to treatment. She notes ongoing clinical trials, including a Paxlovid trial that was negative but highlights hope for new antivirals and monoclonal antibodies targeting viral components.[1]

1317-1452: The conversation highlights the frustration many patients face due to a lack of diagnostic tests and effective treatments for long COVID. Symptoms include pain, fatigue, and cognitive issues. Despite recent trial failures like colchicine and Paxlovid, Iwasaki remains hopeful that future trials with appropriate drugs and durations will yield results.[1]

1555-1957: Iwasaki explains post-infectious syndromes as a broad group of chronic conditions that occur after various infections, not just COVID-19, including viruses such as Ebola and SARS, as well as bacterial and parasitic pathogens. She contrasts these syndromes with well-defined autoimmune diseases like type 1 diabetes and multiple sclerosis. She advocates using the term post-acute infection syndrome for medically unexplained chronic conditions including myalgic encephalomyelitis/chronic fatigue syndrome (ME-CFS).[1]

2012-2335: Iwasaki discusses a recent European study showing the shingles vaccine (Shingrix) may reduce dementia risk, highlighting long-term vaccine benefits beyond prevention of immediate illness. The vaccines prevent herpes virus reactivation that is linked to nerve damage and neurodegenerative diseases. Two doses provide stronger immunity and ongoing questions remain about the need for booster doses as people age and live longer.[1]

2425-2756: The hosts explore post-vaccination syndrome with symptoms similar to long COVID but triggered after vaccination, often in healthy individuals. This condition faces political polarization and limited medical recognition. Iwasaki emphasizes the importance of acknowledging and researching these patients to develop therapies and improve vaccine safety, despite the challenges and criticism from multiple sides.[1]

2956-3339: Iwasaki shares her personal experience with alpha-gal syndrome, a tick-borne allergy to mammalian meat affecting over 400,000 people and increasing due to climate changes. The allergy causes severe reactions and requires strict avoidance of mammalian products. Diagnosis can take months or years. Interestingly, the allergy does not affect cannibals because human muscle lacks the triggering antigen.[1]

3440-3628: Iwasaki discusses her continued use of the social media platform X (formerly Twitter) because many patients follow her there. She acknowledges it has become a more hostile environment but values its reach across diverse political spectrums. She also holds Instagram for personal use and is banned from TikTok by her daughters.[1]

3702-3758: The hosts congratulate Iwasaki on receiving the prestigious science prize from Keio University in Japan, noting she is the first Japanese woman recipient. Her leadership, mentorship, and extensive contributions to science and society are highly praised.[1]

3813-4135: The podcast ends on a positive note with an update on H5N1 avian influenza. Human cases are stable around 70, but outbreaks in poultry remain widespread. Researchers in Bern developed an RNA replicant vaccine for birds that induces strong immunity and reduces viral shedding, potentially stopping spread at the farm level and leading to eventual eradication. Despite the virus's mutation risk to humans, there is hope from scientific progress. The hosts express optimism amidst current challenges.

 

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EXPANSION OF LIINC COLLABORATIVE STUDY TO ME/CFS​

Expansion of LIINC collaborative study to ME/CFS - PolyBio Research Foundation

Project Summary: To use advanced technologies to study critically important – yet understudied – biological factors in ME/CFS patients whose illness...

polybio.org

Project Summary: To use advanced technologies to study critically important – yet understudied – biological factors in ME/CFS patients whose illness began before 2019. These include enterovirus tissue persistence and T cell brain & spinal cord immune activation. Specifically:

• The UCSF LIINC team is beginning to study root cause drivers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
• A group of very well-characterized ME/CFS patients will be followed over time, with many samples collected and stored in a biobank per patient
• Samples will be shared widely within the UCSF and PolyBio networks so that a range of infectious, immune, and genetic analyses canbe performed
• Gut tissue will be collected from a subset of patients to search for enterovirus viral persistence and other abnormalities
• Advanced full-body imaging for T cell activation throughout the brain and spinal cord will also be conducted on a subset of patients

Project background:

Started in April 2020, the PolyBio-supported LIINC study was among the first collaborative studies of long COVID in the U.S. The team has since enrolled more than 1000 individuals and published more than 25 papers on long COVID biology. Biological samples collected by the team are banked, and serve as a clinical sample core for PolyBio’s LongCovid Research Consortium.

PROJECT TEAM​

Michael Peluso, MD, Assistant Professor, Division of HIV, Infectious Diseases, and Global Medicine, Department of Medicine, University of California San Francisco

Steven Deeks, MD, Professor, Division of HIV, Infectious Diseases, and Global Medicine, Department of Medicine, University of California San Francisco

Tim Henrich, MD, Associate Professor, Division of Experimental Medicine, Department of Medicine, University of California San Francisco

 

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Runner sidelined by long COVID for 4 years to compete in Marine Corps Marathon​

Runner sidelined by long COVID for 4 years to compete in Marine Corps Marathon

Just a few months ago, working out on a stationary bike wouldn’t have been possible for Sarah Weimer. She struggled with the effects of long-haul COVID-19 for four years. Now she rode a bike as she prepared for the Marine Corps Marathon. Weimer described what she went through with long COVID...

www.nbcwashington.com

Just a few months ago, working out on a stationary bike wouldn’t have been possible for Sarah Weimer. She struggled with the effects of long-haul COVID-19 for four years.

Now she rode a bike as she prepared for the Marine Corps Marathon.

Weimer described what she went through with long COVID.

“The most debilitating was definitely the fatigue. I just couldn’t get out of bed. I couldn’t work a full schedule. I had heart palpitations. My lymph nodes would swell up. I had severe headaches. I had it all checked out and nothing came up except long-haul symptoms,” she said.

Weimer was an avid runner who has completed the Marine Corps Marathon twice. She’s also a physical therapist specializing in the treatment of orthopedic injuries, with a specific focus on runners. As she struggled with her symptoms, she had to give up many of the things she loved.

“It took everything away from me, from running to my mental health. I was in some really deep, dark places at that time because everything I did was around physical fitness and there wasn’t anything that I could do about that,” she said.

Last summer, she had a breakthrough after a second bout with COVID.

“I actually got COVID again in July of this year and, for some reason, all of my symptoms have gone away. I’ve been able to run and I’ve started training again, which has been fantastic,” she said.

She started training in August for this year’s marathon. She said she’s nervous but ready for the challenge.

“This marathon means everything to me because I have not been able to run for four years. I haven’t run a marathon in eight years,” she said. “So, being able to just do this marathon, even if I have to walk it in, it’s completion for me. It’s telling me that I can end this chapter in my life of sickness and move on from there.”

 

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I think I just discovered a way to promote oneself as ME & long covid specialist.

https://www.news10.com/business/press-releases/ein-presswire/859078390/texas-physician-reports-multi-system-treatment-protocol-helping-long-covid-patients-recover-faster/

Inspired by this article about

Dr Robert Grosman, Long Covid Specialist
…
The six mechanisms Dr. Groysman has identified work in combination to create Long COVID’s debilitating effects:

• Dysautonomia disrupts the autonomic nervous system, causing dizziness on standing, rapid heart rate and blood pressure instability
• Mitochondrial dysfunction starves cells of energy at the molecular level
• Endothelial damage restricts the use of oxygen throughout the body
• Mast cell activation triggers inflammatory signaling
• Gut dysbiosis compromises immune system function
• Hormonal disruption throws off the body's chemical messaging system

Rather than treating these systems independently, Dr. Groysman's protocol first addresses how they’re interconnected. This approach has shown results even in patients who’ve suffered for years.
…
Dr. Groysman treats patients internationally from his Plano practice. He's published five volumes of his planned 7-volume “The Complete Long COVID Handbook series” to share his findings on the six-mechanism treatment framework with patients and physicians globally.

The service that published this self-promotion article:

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RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness​

By Effie Seiberg, Contributor

https://www.sfchronicle.com/opinion/openforum/article/rfk-chronic-illness-hhs-21110673.php

 

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Metformin has been shown to reduce the risk of Long COVID. Why isn’t it more widely used? - The Sick Times

Recent studies add evidence to a prior phase 3 clinical trial, suggesting that taking the diabetes drug during acute COVID-19 reduces the risk of long-term symptoms.

thesicktimes.org

Key points you should know:

• Metformin is a medication that is prescribed to help manage blood sugar levels and is often used for treating type 2 diabetes.
  
• A major clinical trial, which included about 1,300 participants, found that taking metformin during acute COVID-19 reduced the risk of developing Long COVID by 40%.
  
• A second major clinical trial, which included nearly 3,000 participants, also found a reduced risk of developing Long COVID in patients who took metformin during acute COVID-19.
  
• A new retrospective cohort study similarly found that higher-weight adults who took metformin during an active SARS-CoV-2 infection had a lower chance of developing Long COVID.
  
• In spite of this evidence, metformin is not widely used to prevent Long COVID, with many doctors unaware of this benefit.

 

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Long COVID in Kids: What Pediatricians Need to Know

New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.

www.medscape.com

Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know​

It was there, under Malone’s care, that Denault finally received a diagnosis — postural orthostatic tachycardia syndrome, a condition associated with long COVID — and a treatment plan that changed everything.

A key part of that plan was the medication midodrine, used to manage hypotension, which Denault called his “miracle drug.”

“It got me kind of off the couch and into the classroom, which was really awesome,” he said. “It definitely gave me a boost.”

The second part of his recovery was a meticulous physical rehabilitation regimen, monitored by Malone. The goal was to find a delicate balance: doing enough exercise to challenge his body without pushing it into a relapse.

This painstaking process, which also included a rigid sleep schedule and structured daily routines, eventually paid off. Nearly 2 years after contracting long COVID, Denault, who once needed a wheelchair for college tours, stepped onto the basketball court for his senior season.

 

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Pandora Org​

Dear ME/CFS Community,

After decades of dedicated service, education, and advocacy, the Patient Alliance for Neuroendocrineimmune Diseases Organization for Research and Advocacy (PANDORA Org) will officially dissolve. As we close this chapter, we pause to honor the remarkable work, compassion, and perseverance of all who have advanced awareness and improved the lives of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related neuroendocrine-immune diseases.

PANDORA Org, previously known as CFS Solutions of West Michigan, was led by Lori Chapo-Kroger, RN, President and CEO, along with Board Members Donna Robillard, Teresa Dutmer, Dawn Schulte, and Laurie DeDecker (deceased). Together, this dedicated team guided the organization’s mission to support patients, educate medical professionals, and advocate for recognition and research.

Our work began in 2005 with in-person support groups across Michigan, continuing through 2014. These gatherings provided education, resources, and fellowship at a time when few medical professionals understood ME/CFS. In 2007, we hosted the first-ever ME/CFS continuing medical education conference in Traverse City, presented by Kenneth Friedman, PhD.

On July 15, 2011, Marly Silverman of PANDORA Org, Mike Munoz of the Rocky Mountain CFS/FM Association, Lori Kroger of CFS Solutions of West Michigan, and independent advocate Mary Dimmock submitted the first-ever advocacy proposal to the CDC’s National Center for Health Statistics to reclassify the U.S. ME/CFS diagnostic code. This effort sought to move ME/CFS from R53.82 (unspecified chronic fatigue) to the neurological chapter of the ICD-10-CM. After years of persistence, the proposal succeeded in 2022, establishing the new code G93.32 for myalgic encephalomyelitis, chronic fatigue syndrome, and myalgic encephalomyelitis/chronic fatigue syndrome.

In 2012, PANDORA Org and CFS Solutions of West Michigan merged and continued operating under the PANDORA Org name, expanding our advocacy at both state and national levels.

In May 2018, Michigan advocates met with Senator Debbie Stabenow’s office to discuss advancing ME/CFS funding and medical education. Her staff connected us with the Michigan Department of Health, medical leaders, and members of the Health Policy Committee to help move forward Resolution 0372.

On May 12, 2018, PANDORA Org helped host a free community screening of the documentary Unrest at the Clinton-Macomb Library, followed by a panel discussion and visibility action. Led by Kristina Osobka, attendees recorded messages to NIH Director Dr. Francis Collins, urging for increased research funding and a cure.

In March 2019, Senator Lana Theis introduced a resolution recognizing ME/CFS as a serious, debilitating disease and calling for improvements in patient care, medical education, and research. With the leadership of Michigan advocate Brian Schull, the resolution was adopted on May 15, 2019.

That same year, Kristina Osobka reached out to the Michigan State Medical Society (MSMS) to propose continuing medical education (CME) credits focused on ME/CFS. Through collaboration between PANDORA Org and the Bateman Horne Center, this initiative helped educate physicians across Michigan.
In 2019, PANDORA Org presented a poster at the International Conference for ME/CFS on the challenges patients face accessing knowledgeable care. That same year, our study, “Lack of Knowledgeable Healthcare Access for Patients with Neuro-Endocrine-Immune Diseases,” was published on ResearchGate, highlighting the urgent need for systemic change. Tina Tidemore was the lead author.

Also in May 2019, Congressman Jack Bergman met with Dr. Ron Davis at Stanford University to learn more about ME/CFS—an introduction made possible through our advocacy. Congressman Bergman later spoke at ME/CFS Day in Washington, D.C., and sponsored letters supporting increased federal research funding.

In September 2021, PANDORA Org joined other national organizations to submit a proposal to add ME/CFS to the U.S. International Classification of Diseases (ICD-10-CM). The proposal was approved, and as of October 1, 2022, ME/CFS is officially recognized in the U.S. classification system—allowing improved data tracking and visibility for patients, including those who developed ME/CFS following COVID-19 infection.

Beyond advocacy and education, PANDORA Org reached people in deeply personal and practical ways. Under Donna Robillard’s leadership, the “Covered in Love” Quilt Program provided more than 150 handmade quilts to people with ME/CFS as gifts of warmth and hope. The “PANDORA Delivers” Meal Program supplied over 1,200 meals to patients across the U.S., led by Sandy Sizemore. Volunteers also distributed gas cards for medical travel, testified before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, D.C., and provided in-service education for hospitals and physicians’ offices.

As PANDORA Org concludes its formal operations, we do so with deep gratitude to every volunteer, advocate, donor, and supporter who made this mission possible. Together, we built community, educated the public, and gave voice to thousands of patients too often overlooked by the medical system.

Though the organization is closing, our shared commitment to awareness, compassion, and change will live on—in every quilt sewn, every meal delivered, every voice raised, and every life touched by PANDORA Org’s enduring legacy.

In Loving Service,
Lori Chapo-Kroger, RN, President & CEO
and the PANDORA Org Board of Directors