News from the USA, United States of America

From the link above:

Moving to Infection Associated Chronic Illnesses

The second NASEM consideration of infection and chronic illnesses, “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses,” was reported in 2024. This workshop focused on the unexplained syndromic illnesses that follow acute infection. These were first recognized simply as the failure to follow the expected recovery from acute infection, resulting in prolonged illness over many years or months. A review in 2022 used the term ‘unexplained post-acute infection syndromes’ while NASEM used the term ‘infection-associated chronic illness’ (IACI), in recognition of the uncertainty about whether the original triggering infection had indeed been cleared, but both terms refer to the same group of syndromic illnesses.

Many viral and non-viral infectious agents are recognized to be associated with these syndromes that have similar symptoms as well as considerable overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a poorly understood multisystemic illness often suspected to have an infectious trigger. The syndromic illnesses following a specific or, in the case of ME/CFS, unknown infection have been challenging to understand. Specific diagnostic tests and treatments have not been identified, leaving both the diagnosis and clinical care to be based on symptoms.

It could be argued that, given the significant symptom overlap between these conditions and failures of the siloed approach, considering these conditions as a whole or including several different conditions as comparison groups may be needed to identify the underlying causal pathways that may be shared.
 
Long COVID is best considered as a group of infection associated conditions requiring developing research studies and treatment trials that address the inherent heterogeneity.

I think we just don't know enough to be confident about that. I don't see a fatal flaw with the alternative interpretation that a common process or mechanism can drive disparate presentations.
 
RFK Jr has fired all 17 members of CDC’s Advisory Committee for Immunization Practices. The US now has no CDC director and no ACIP. Control of US vaccines is concentrated in the office of an HHS Sec who doesn’t believe any vaccine is safe and effective.

WSJ: June 9, 2025

RFK Jr: HHS Moves to Restore Public Trust in Vaccines

"We're reconstituting an advisory committee to avoid conflicts of interest."


 
The Bleach Community is ready for JFK Jr to Make their Dreams Come True

Online communities dedicated to the use of toxic bleach solutions to treat everything from cancer to autism believe Robert F. Kennedy Jr. is interested in their cause.

“We are thrilled that RFK Jr. is in charge,” Michelle Herman, who sells a nasal spray containing chlorine dioxide and says she’s discussed the topic with Kennedy, tells WIRED. She was pictured, along with other bleach enthusiasts and activists, at the recent Truth Seekers conference held at Trump’s Doral resort in Florida.

“The bleachers are back, making connections with powerful people, reaching RFK and Trump,” says Fiona O’Leary, an Ireland-based activist who has autistic children and has spent years trying to highlight the dangers of toxic bleach solutions being sold as an autism cure. “Bleachers want RFK to approve chlorine dioxide as a treatment for autism, cancer, and other conditions. It is like watching a horror show.”

Kennedy, according to chlorine dioxide advocates, has been interested in their cause dating back to at least 2023.
 
The Sick Times: 'Minnesota’s unique Long COVID program retains funding following advocacy'

'Advocates pushed back against threatened funding cuts and won continued support for Long COVID work in the Minnesota legislature’s final 2026–27 budget.'

'Minnesota advocates pushed back on the proposed cuts, led by local myalgic encephalomyelitis (ME) groups including #MEAction’s Minnesota chapter and Minnesota ME/CFS Alliance.'

'More than 375,000 people in Minnesota have been affected by Long COVID and related infection-associated chronic conditions (IACCs), according to MDH’s research'

'“We hope this news will be a glimmer of relief for those impacted by Long COVID and related conditions, as well as for everyone whose efforts are supported by this funding,” wrote program lead Kate Murray in an email sent to grantees and partners, shared with The Sick Times.'
 
U.S. Federal Register: Rehabilitation Long-Term Training Program: ME/CFS


Source: U.S. Federal Register
Vol. 90, #115, pp 25493-25494
Date: June 17, 2025
URL:
https://www.federalregister.gov/doc...nts-rehabilitation-long-term-training-program

https://www.govinfo.gov/content/pkg/FR-2025-06-17/pdf/2025-11117.pdf


[A Rule by the Education Department]

Final Priorities and Requirements - Rehabilitation Long-Term Training Program
-----------------------------------------------------------------------------

The Department of Education (Department) announces priorities and requirements under the Rehabilitation Long-Term Training (RLTT) program with a focus on the Comprehensive System of Personnel Development (CSPD)
and six rehabilitation topic areas.

(...)

The priorities and requirements are effective July 17, 2025.

(...)

We have removed 'Such mental health disorders and illnesses might include mood disorders (e.g., depressive disorders and bipolar
disorders), suicidality, schizophrenia, eating disorders, post-traumatic
stress disorder, and other mild to severe mental health disorders. This
can include mental health issues related to long-term effects of
post-acute infection syndromes (COVID-19 and myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) for which mental
health care may be part of treating a potentially more systematic
illness.' from Priority 2, Topic Area 3.

(...)


Diana Diaz,
Deputy Assistant Secretary and Acting Assistant Secretary for Special
Education and Rehabilitative Services.

[FR Doc. 2025-11117 Filed 6-16-25; 8:45 am]
BILLING CODE 4000-01-P
 
Raleigh News & Observer: 'Funding cuts force one of North Carolina’s only Long COVID clinics to shut its doors'

'The UNC COVID Recovery Clinic, one of the only clinics in the state designed to treat patients with Long COVID, closed on June 16 due to funding cuts, according to a news release.'

'Since 2021, the clinic in Chapel Hill has seen thousands of patients, most of whom report fatigue, brain fog, sleep impairment, shortness of breath and anxiety lasting months or years after a COVID-19 diagnosis, according to data from the clinic.'

“We are committed to ensuring that all of these patients continue to receive medical care, with as little disruption as possible,” a spokesperson for UNC Health said in a statement to The Charlotte Observer.'
 
Maryland Today: 'COVID ‘Long-Haulers’ Lack Reliable Information, UMD Study Shows'

'INFO's Beth St. Jean finds long COVID patients face info gaps, fueling distrust and risky decisions'

“They’re just being dismissed and gaslighted,” said College of Information Associate Professor and coauthor Beth St. Jean. “They’re facing an information dumpster fire.”

“I was so frustrated with the lack of answers,” said the ultrarunner. “It was just me typing in my symptoms, asking Dr. Google.”
 
'Weill Cornell Medicine-Led Consortium Receives $13.5 Million to Expand Patient Data Network'

''The INSIGHT Clinical Research Network (CRN), a database of more than 23 million patient health records, has received $13.5 million in renewed funding from the Patient-Centered Outcomes Research Institute (PCORI).'

'During Phase 3, Drs. Kaushal, Weiner and Campion utilized INSIGHT to co-lead the “RECOVER PCORnet Adult Initiative to Use Real World and Electronic Health Record (EHR) Data to Study Post-Acute SARS CoV-2 Syndrome (PASC),” a nationwide consortium of more than 40 health care institutions analyzing EHR data to detect, predict, treat and prevent Long COVID. Results of Phase 3 studies included identifying four major subtypes of long COVID and finding the risk of long COVID varies in different populations.'
 
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C&EN: “Reactions: ACS’s response to Trump, and US funding decisions”

RE: “White House Proposes to Slash Science Spending” (C&EN, May 12, 2025, page 12)

The US budget deficit requires some spending cuts and efficiency gains, but gutting the National Science Foundation, the Department of Health and Human Services, and the Environmental Protection Agency while adding NASA spending for crewed missions to the moon and Mars makes no sense. Crewed Mars and moon missions should be deprioritized for at least a decade since they have near-zero return on investment (ROI) and huge risks to people. Funding should be spent on Earth or in low-Earth orbit, which will have better ROI. Much better ROI for the US would be to fully fund R&D to find diagnostics, treatments, and cures for long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and related chronic illnesses that are disabling million in the US so we can indeed make America healthy again. HHS director Robert F. Kennedy Jr. testified that his son has long COVID. Senator Tim Kaine is also affected.

Mark J. Camenzind
San Ramon, California
 
Allison O'Donnell Substack: 'A Love Letter to Long COVID'

"Note: Since 2022 I worked with a team that coordinated the federal response to Long COVID from the Department of Health and Human Services. I was the Deputy Director and creator of the Office of Long COVID Research and Practice. We worked with hundreds of federal colleagues, patient advocates, clinicians, researchers, and public health professionals to find solutions to Long COVID across all aspects of life. In April 2025 the office was abolished, and my position was eliminated as part of the federal Reduction in Force led by the Trump Administration."

'People living with Long COVID remind us that we cannot go back and we must not forget'

'And we must not abandon those with Long COVID. We do not understand Long COVID. We don’t know what it is doing in our body to wreak such havoc'

'People with Long COVID also want their life back. They want to move their bodies. Think clearly, learn, produce, and be creative. They want to spend time with friends. Travel to see family.'

'Thank you to everyone living with Long COVID for being our collective memory. I am sorry you must carry this burden, but I am eternally grateful for you.'
 
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