Thinking of any members in LA and hoping you are OK . There are currently 3 wildfires and 2 evacuation orders https://news.sky.com/story/la-wildf...-mother-natures-terrifying-levellers-13285287
This is from 2023, but sharing for sight as I came across today from an MD affiliated with Univ. of Minnesota in a letter addressed to the MN House of Representatives on LC & ME. 3/20/23, 'Bazak Sharon, MD - Univ. of Minnesota: 'Letter to Minnesota House of Representatives, Chair Leibling & Committee Members' Excerpts: 'So far I have seen more than 100 children with complaints of variety of persistent, and often debilitating symptoms. This experience gives me an excellent vantage point to explain Long Covid, its clinical presentation, and its impact on individuals, communities, and society, particularly children and their families. 'ME/CFS is a complex disease that is characterized by overwhelming fatigue and causes substantial loss of physical and mental stamina. It debilitates patients and many cannot maintain their regular daily activities, cannot work, function as they used to, and some are bed ridden and lose their mobility. But ME/CFS not only incapacitate individual patients, but it also represents a substantial burden of families, communities, and the economy. The estimate annual direct and indirect economic costs of ME/CFS are between $17 and $24 billion.' 'The pathology seen in patients with Long Covid is very similar to other post-viral syndrome and in addition to ME/CFS..' 'This association between Long Covid and ME/CFS also represents an opportunity to tackle these challenges in two fronts. First, we can build on the knowledge and experience we have about the diagnosis and management of ME/CFS to design the optimal response to long covid. Model for effective management include increasing access to healthcare, educating primary care providers and providing resources, promoting clinics to provide coordinated, holistic, and individual care.' 'Second, ME/CFS and other post-viral syndromes have long been a significant blind spot in the field of medicine. These chronic illnesses have been misunderstood for generations before becoming controversial in the age of evidence-based medicine. But even after scientific theories have emerged to explain fatigue and other chronic illnesses as sequalae of acute infection, the sporadic epidemiology of these syndromes has been a major obstacle to research. SARS-CoV-2 and the COVID-19 pandemic have provided a unique, once in a generation opportunity to combine clinical care with observational and hypotheses driven projects to study chronic illness and its association with viral infection. The same concepts that are so important to effective management (access to care, educating primary providers, promoting coordinated care) can also serve as the foundation to longitudinal studies on a large cohort of children infected with SARS-CoV-2 in Minnesota, with implications on the scientific understanding of post-viral syndromes in all populations everywhere in the world.’
1/8/25: “Secretary’s Advisory Committee on Long COVID (ACLC) Members” “Today I am excited to announce the U.S. Department of Health & Human Services will induct in the first wave of members to the Secretary’s Advisory Committee on Long COVID” - Ian Simon, Director, Office of Long COVID Research and Practice https://www.hhs.gov/ash/advisory-committees/long-covid/members/index.html
The story had no link to the bill (or maybe I missed it...) but I'm pretty sure the legislation being discussed is the Long Covid Moonshot bill. https://www.congress.gov/bill/118th-congress/senate-bill/4964/text/is https://longcovidmoonshot.com/
1/10/25, Minnesota Department of Health: 'Impact of Long COVID Symptoms in Minnesota' 'In 2023, the Minnesota Department of Health (MDH) called 20,000 adult Minnesotans with a known COVID-19 infection to learn about symptoms and experiences occurring three months or more after their infection. A total of 1,270 people completed the interview.' 'Over 40% of the survey respondents reported having at least one symptom lasting three months or longer after they had COVID-19. Many experienced symptoms lasting six months or longer. Approximately 1 in 5 respondents had a long-lasting symptom that was severe. The most common long-lasting symptoms were tiredness, fatigue, shortness of breath, brain fog, and cough.' 'Two-thirds of those with long-lasting symptoms said they had difficulty performing daily activities, such as household tasks or going to work or school.' 'MDH is one of the first state health departments in the country to have a program and staff dedicated to long COVID. Work includes: - Providing funding to 18 community partner organizations that serve disabled, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), low income, rural, American Indian, Latine, African American, African immigrant, Asian American, Asian immigrant, and LGBTQ+ communities throughout Minnesota. These organizations reach thousands of individuals disproportionately impacted by the COVID-19 pandemic. They are helping us to understand the impacts of long COVID, raise awareness, and increase access to quality care and support for long COVID and related conditions.' Link to website as well.
CIDRAP: '4 in 10 Minnesota COVID survivors report having at least one lingering symptom' "This suggests that an estimated 365,000 adults in Minnesota could have experienced symptoms of long COVID," MDH wrote.' 'MDH said it is conducting a statewide study with 12 healthcare systems that serve over 90% of the state's population to recognize and describe long-COVID with the aim of improving diagnosis and treatment, particularly among underserved patient groups.'
Minnesota Star Tribune: 'Long COVID indeed: Symptoms linger after illness for four in 10 Minnesotans' 'State surveyors struggled to get Minnesotans to talk about their post-COVID health, but found a high rate of symptoms such as fatigue and brain fog.' 'It remains unclear why this happens, but researchers suspect that the COVID virus reprograms the immune system to mistakenly attack the body.'
CIDRAP: “1 in 20 COVID survivors may have condition characterized by extreme fatigue” "RECOVER provides the opportunity to identify objective biomarkers and to study the biology, mechanisms, and natural history of post-COVID-19 ME/CFS” https://www.cidrap.umn.edu/covid-19...-have-condition-characterized-extreme-fatigue
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..."
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..”
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.”
KSTP: “MDH releases results of first-of-its-kind survey on long COVID experience in Minnesota” “..Murray estimated it’s more likely that roughly 8% of Minnesotans have had long COVID, which would be an estimated 365,000 people” Amy Engebretson, medical doctor with Long COVID: “It’s a tragedy of the medical system.”
(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
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’
Live Science: '1 in 22 COVID survivors develop debilitating chronic syndrome' 'A study suggests that catching COVID-19 significantly raises the risk of developing ME/CFS..' "This study's findings underscore the urgent need for treatments," Pollack said
Forbes: 'Higher Risk Of Long COVID In Women, Link Between SARS-CoV-2 And ME/CFS' 'As Dr. Horwitz remarked, “For the millions of people suffering from long COVID worldwide, finding effective treatments is an urgent priority.”
Huh, I think that's the first time I've seen a headline use the phrase "debilitating chronic syndrome" to refer to ME/CFS. Much better than using "chronic fatigue."
(18 minute segment) 1/24, Science Friday: 'Can Paxlovid Relieve Long COVID Symptoms? For Some, Yes' Joining Ira to talk about the results are two authors of the study, who have both had long COVID for years - Dr. Alison Cohen, UCSF - Dr. Julia Moore Vogel, Scripps Research
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.
Forbes: “Exercise Intolerance Is Common Among People With Persistent Long Covid: Study” “At least 14% of people who tested positive for Covid-19 in the United States have suffered or are still suffering from long Covid symptoms” https://www.forbes.com/sites/anurad...mong-people-with-persistent-long-covid-study/
