News from the USA, United States of America

MPR News: 'Minnesota Now: Jan. 15, 2025'

'We learn about the survey’s findings from the supervisor of Minnesota’s Long COVID response'

"It's the first major insight public health officials are getting into Long COVID..."

(segment time 6:25 - 16 min)

Kate Murray, Long COVID Program Manager: "..some of the more common symptoms we found in our survey were tiredness and fatigue. This is not just needing a nap. This is fatigue that is interfering with their daily lives.."

"We had a highly trained and experienced team making the calls and conducting the survey...we asked them about symptoms, severity, duration...changes in ability to perform daily activities, experiences in healthcare...social support.."

"This is important for helping us identify some of our priorities in public health actions, as well as those of healthcare providers and understanding social service utilization..it's important to have some data behind what we've been hearing about from people with Long COVID and caregivers...this is pretty consistent with what we're hearing with how this is impacting people's lives.."

"...for some, this has been really debilitating and has upended their lives.."

"Our program is raising awareness about Long COVID...this isn't a new phenomenon. These kinds of chronic conditions can happen after a lot other acute infections."

"We certainly hope there are better treatments that come out in the next 2 years, or sooner. That there is easier diagnostic tests and more straightforward ways of identifying people with Long COVID, because that can be a challenge for providers. And to continue getting a better sense of what the impacts are and how we can increase access to quality support to people with Long COVID..."
 
Last edited:
1/16/25: 'Dr. Ian Simon, PhD - Director, Office of Long COVID Research and Practice, U.S. HHS' Simon'

'This long-lasting chronic set of symptoms following an acute infection, it's actually come to the forefront of our minds now...17 million Americans..'

"NIH is tackling that basic biomedical investigation to try to understand the underlying causes to Long COVID, so that we can target the mechanisms that need to be targeted for treatments to develop diagnostics, to develop therapeutics - to really get at what's the cause'

"We're looping in things like ME/CFS & other kinds of chronic conditions that have long gone under-appreciated, underfunded - the hope is that not only will this robust research effort yield answers for Long COVID, but could also yield answers for those other conditions..'

(on HHS LC Advisory Committee)

"We've got 14 wonderful members to be our first cohort that span a whole range of expertise from researchers, to clinicians, to people with lived experience. So, we're bringing patients, bringing people with Long COVID, with the experience of surviving Long COVID, recovering from Long COVID, onto the committee and they are going to be charged with providing the government, providing HHS, with their recommendations for how best to address Long COVID and other infection-associated chronic conditions.

We have folks with expertise in civil rights related to disabilities experience working on other infectious-associated chronic conditions. So, it's really their expertise that now has a formal mechanism to provide independent advice to the government to tell us what is it, where should we be focusing, on what gaps still need to be filled and so we're going to get rolling with that work - our first public meeting is going to be March 10th and 11th - we're really excited to be to be moving with that as we get into 2025..”
 
Last edited:
1/2/25, Johns Hopkins: 'Taking a Shot at POTS'

'In the U.S., there are few physicians and clinicians who treat POTS..'

'Madeline Brown..I’m a doctor..there was something wrong with me. I went from being completely healthy to basically being bedridden..'

"But what’s really driven an “explosion” in POTS cases, Adler says, has been the COVID-19 pandemic. Before COVID-19, an estimated 500,000 to 3 million patients in the United States were believed to suffer from POTS. Since the pandemic, that number has risen dramatically.

“We’ve seen a large increase in patients who develop POTS after COVID-19,” she says. “There just aren’t enough doctors to evaluate and treat them. It’s a huge public health problem.”

“There’s probably dozens of different causes of POTS,” says Adler, “and we don’t have a biopsy or single diagnostic test to guide us.” In her research, Adler is pushing to gain a better understanding of the immunologic basis of POTS in distinct subgroups of patients.

'She is working closely with infectious disease specialist John Aucott, M.D., director of the Johns Hopkins Lyme Disease Research Center, to examine how POTS develops after Lyme disease, in addition to after COVID-19.'

“We are at the forefront of this emerging field, which has become a hot area of study since the pandemic. It is a very exciting time for research,” she says. “For too long, doctors dismissed patients with POTS. It’s very clear at this point that POTS is something very real and I am hopeful that we will start to unravel this complex disease.”
 
(18-page slide presentation, ME mentions)

2024 - Long COVID Guiding Council, convened by Minnesota Department of Health Long COVID Program: 'Could My Patient Have Long COVID?'

'Patients need to feel heard and believed'

Session Objectives:
• Describe scope and impact of long COVID in Minnesota and United States
• Identify key features in the clinical presentation of common COVID phenotypes
• Discuss options available for symptom management and support for patients presenting with symptoms consistent with long COVID

By Jane Rudd, MD, Essentia Health; Stephanie Grach, MD, Mayo Clinic; Jay Desai, PhD, MN Department of Health
 
Last edited:
Sharing this analysis published today in terms of economic impact of LC.

Center for Infectious Disease Research and Policy (CIDRAP), University of Minnesota: 'Analysis shows significant financial burden of long COVID in US'

‘Long COVID could end up costing US society $2.01 billion to $6.56 billion, employers at least $1.99 billion to $6.49 billion, and third-party payers $21.0 million to 68.5 million annually’
 
I wouldn't expect any government-funded biomedical news out of US now that everything is halted indefinitely. I just got personally hit by this--not related at all to public health or ME but for another side project I've been involved with on media diversity. I've worked for 25 years with an organization called Media Diversity Institute in London that has State Dept grants related to promoting diversity in media coverage. All State Dept foreign aid grants, like all NIH and other programs, are now on hold indefinitely.

ADDED: So far, I haven't been impacted on the public health side. I'm not currently involved in any US-government funded public health programs, given that I crowdfund. But I expect these disruptions will be huge hits for all University of California campuses and all major universities.
 
Last edited:
New Hampshire Bulletin: 'The pandemic may have ended, but for these NH long COVID patients, the virus’ impact continues'

'One of New Hampshire’s lawmakers is among those experiencing long COVID, Wendy Thomas...'

'That’s why Thomas proposed House Bill 58. The bill would create a commission tasked with studying possible protections and accommodations for people with long COVID.'

“I’ve become an advocate for people who have post-viral symptoms,” she said.

"For Ballard, the condition came with brain fog, forgetfulness, shortness of breath, fatigue, and increased heart rate. “It was the brain fog and the forgetfulness that was really the scariest thing...ultimately, she didn’t return and resigned from police work."
 
Salk Institute: 'Connecting the dots—From the immune system to the brain and back again'

'Adinig is not alone; an estimated 17 million adults have some form of long COVID..clinicians still don’t know who is most likely to develop lasting cognitive symptoms or why'

“When our immune system responds to an infection, our brain and cognition are clearly impacted in ways that we don’t fully understand.”

'Armed with a new $20 million, five-year gift from the NOMIS Foundation, Kaech and her faculty colleague Associate Professor Nicola Allen are co-leading a new Neuroimmunology Initiative at Salk to focus on this topic.'

'Once Salk researchers identify the brain changes that follow an infection, their next task will be to figure out exactly how they come about.'

'Could immunotherapies one day treat or prevent these brain diseases? Could similar drugs stop the lasting brain fog and cognitive dysfunction of long COVID or chronic fatigue syndrome? Could our brains hold the key to treating allergies and autoimmune diseases?'

'By bringing neuroscientists and immunologists together, the Salk Neuroimmunology Initiative hopes to answer questions like these.'
 
From: Dr. Marc-Alexander Fluks

Source: U.S. Federal Register Vol. 90, #20, p 6912 Date: January 21, 2025 URL: https://www.federalregister.gov/doc...268/rehabilitation-long-term-training-program
https://www.govinfo.gov/content/pkg/FR-2025-01-21/pdf/2025-00268.pdf
[A Proposed Rule by the Education Department]
Rehabilitation Long-Term Training Program

-----------------------------------------
AGENCY: Office of Special Education and Rehabilitative Services (OSERS), Department of Education.
ACTION: Proposed priorities and requirements.

SUMMARY:
The Department of Education (Department) proposes 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 Department may use these priorities and requirements for competitions in fiscal year (FY) 2025 and later years. This action is intended to address the national needs for the RLTT program, particularly the retention of qualified vocational rehabilitation (VR) personnel in the field of State VR services and the training of RSA scholars who aspire to become VR professionals and will fill critical VR positions where there are shortages.
(...)
Proposed Priority:
Under the Proposed Priority 2, applicants must propose a project that provides academic training to RSA scholars where the training leads to a degree (undergraduate or master's level) or academic certificate in one of six rehabilitation topic areas that follow:
(...)
3. Rehabilitation of Individuals With Mental Health Disorders or Illnesses (ALN 84.129H). Projects in this topic area must be designed to support RSA scholars interested in pursuing a degree or certificate for careers that provide specialized services to individuals who have mental health disorders or illnesses and are participants in the State VR programs. Additionally, projects must be designed to prepare RSA scholars to address a range of issues in VR services for individuals with mental health disorders or illnesses to assist them to achieve and maintain competitive integrated employment. 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.
(...)
Glenna Wright-Gallo, Assistant Secretary for Special Education and Rehabilitative Services. [FR Doc. 2025-00268 Filed 1-17-25; 8:45 am] BILLING CODE 4000-01-P
-------- (c) 2025 U.S. Federal Register
 
New York Times: “I Love You. Please Find Someone Else.”

“In sickness and in health” may sound romantic — until you’re sidelined with a chronic illness”

“..I didn’t know that the virus had left me with post-exertional malaise, a hallmark of long Covid..”

“The Groundhog Day of it all — managing the same symptoms day after tedious day — breaks you mentally. Then it breaks your heart.”
 
Reposting because I put the wrong Zoom link the first time.

---

Research Roundtable with P. Rowe, MD, & A. Azola, MD, of Johns Hopkins ME/CFS Clinic, hosted by Renegade Research

Feb 1, 2025 01:00 PM in Eastern Time (US and Canada)
Johns Hopkins MECFS Clinic Update Part I (Clinical)

Drs. Azola and Rowe will prepare a case presentation and then respond to Q&A from the audience.

Alba Azola, MD is an Assistant Professor of Physical Medicine and Rehabilitation. In 2023, Dr. Azola joined the Chronic Fatigue Clinic at the Children's Center, founded in 1996 by Peter Rowe, MD, with the goal of expanding care to the pre and post pandemic adult ME/CFS population.

Dr. Azola has been a panelist for Renegade Research events. We look forward to hearing her and Dr. Rowe's full clinical approach to people with ME/CFS and similar complex conditions.

Dr. Rowe gave Renegade Research a two part series on Orthostatic Intolerance, Brain Blood Flow, Venous Compression Syndromes, Structural (NeuroAnatomical) Issues, and MCAS in Feb 2024. [Both videos are up at youtube.com/@RemissionBiome.] In August 2024, his book Living Well with Orthostatic Intolerance, A Guide to Diagnosis and Treatment came out.

Part 2 of the 2025 series will be on Friday 2/14/2025 at 1 pm Eastern US. You may register here: https://us06web.zoom.us/webinar/register/6017345588072/WN_6BRjxAliTB29UKZ70Rl6-Q

Link for the Chronic Fatigue Syndrome (CFS) and Related Disorder Program at Johns Hopkins. Includes descriptions of Dr. Rowe and Dr. Azola as well as a list of papers from their research teams. https://www.hopkinsmedicine.org/joh.../adolescent-medicine/chronic-fatigue-syndrome
Click to expand...

This talk will be in two and a half hours.

Link to register
 
You must log in or register to reply here.
Back
Top Bottom