I think that is a bit harsh. Even with robust honest science it is hard. There are heaps of adequate negative studies in ME/CFS. The problem has been in finding a positive lead. If anyone knows where to look I would certainly like to know.
Science Magazine Podcast, 4/11/24: 'Trialing treatments for Long Covid...' (Transcript here) In this segment: Michael Peluso, Sara Cherry, Shelley Hayden 'Reporter Jennifer Couzin-Frankel takes a look at the different trials on the table to treat Long COVID' 'Sara Cherry, a virologist at the University of Pennsylvania has been studying how the virus interacts with different tissues in the body since the beginning of the pandemic. Now, she's looking for biomarkers, molecules, or other substances in the body that largely show up in people with Long COVID. If virus or antigens, viral fragments can be detected, they could help clinicians better track how well treatments work.' 'What we've also been trying to do is look in stool samples from Long COVID patients to see if we can continue to detect viral antigen, and if so, that will give us lots of information. Potentially, we can use that as a biomarker for treatments, watching to see if that goes away. There are other strategies being looked at to try to find remnants of the virus in various accessible tissues. Maybe then, we can be more careful or more thoughtful about which clinical trials we enroll, which patients in to potentially have a better efficacy. MP: 'I had actually wanted to do a study of a monoclonal antibody for Long COVID basically from the moment that we identified that at least some people had these viral remnants. And a subset of people, we think that these remnants are intermittently present in blood, and if that's the case, they could almost act sort of like as a toxin. Setting off an immune response.' JC: 'I think the hope is that we will see results from some of these small trials. By the end of this year, it's gonna be important to be thoughtful about how we interpret the results' SH: In the meanwhile, people need support, and that looks like financial support, that looks like caregiving support, that looks like better training for Long COVID doctors. There needs to be some kind of immediate action to get some education in place so that people have better access to care until we do have treatments. There's not a day that goes by that I don't think about what this is like for the people who don't have family to support them or help them if they aren't able to support themselves anymore.' SC: While patients like Shelly wait for answers, researchers also hope that what we learn from these trials can be used to better understand other chronic conditions that people develop after viral infections. Megan Cantwell: 'So if we understand the mechanisms that drive Long COVID, we may then really be able to understand these other syndromes that we really knew very little about..'
New York Times: Anthony Fauci: 'A Mosquito in My Backyard Made Me the Sickest I’ve Ever Been' 'I began to experience unexplained, severe fatigue & exhaustion..there is no treatment for West Nile virus disease..I was left to deal with its toll on my body..' 'A very scary part of the ordeal was the effect on my cognition. I was disoriented, unable to remember certain words, asking questions of my family that I should have known the answers to. I was afraid that I would never recover and return to normal.' '...it has been a harrowing experience.' 'I tell my story because West Nile virus is a disease that, for many people, can have devastating and permanent consequences. At my age of 83, I was at risk of permanent neurological impairment...' 'There are many people who have not been as lucky as I have been in my recovery. Considerably more resources must be put into addressing this threat now, not when the threat becomes an even greater crisis. As a society, we cannot accept this as the status quo.'
Rare mosquito-borne virus with no cure confirmed in my city last month. The resident died of easter equine encephalitis(EEE) virus. It was the first known case in Canada in years.
The Hill: 'Fauci feared he would never ‘return to normal’ after contracting West Nile virus' “I tell my story because West Nile virus is a disease that, for many people, can have devastating and permanent consequences,” he said.
Saturday, October 12: ‘The Long COVID RISE Symposium’ ‘Join us 10/12/24 for the Long COVID Recovery, Insights, Support, and Education (RISE) Symposium @ UW Seattle.’ “Join us for The Long COVID RISE Symposium where speakers and panels will present information for both patient and clinician audiences. In-person and virtual attendance options available.” “The UW Medicine Long COVID Clinic and RISE Symposium are funded in part by the Agency for Healthcare Research and Quality (AHRQ) as part of the AHRQ Long COVID Care Network.“ Link to agenda: https://t.co/RVzDyc225G (a session with Dr. Beth Unger on ME and Post-Infectious Syndromes is listed)
Harvard Gazette: 'Getting to the bottom of long COVID' 'A reservoir of virus in the body may explain why some people experience long COVID symptoms’ 'The study analyzed 1,569 blood samples collected from 706 people, including 392 participants from the National Institutes of Health-supported Researching COVID to Enhance Recovery (RECOVER) Initiative..’ “Another possible cause of long-COVID symptoms could be that the virus harms the immune system, causing immune dysfunction to continue after the virus is cleared.”- David Walt, a professor of pathology at BWH and principal investigator on the study" “Other viruses are associated with similar post-acute syndromes" - Zoe Swank, Dept. of Pathology, BWH
"Mount Sinai Opens State-of-the-Art Center for Patients With Complex Conditions Including Lyme Disease and Long COVID" 'The Cohen Center for Recovery From Complex Chronic Illnesses will also research new therapies for these conditions"
https://twitter.com/user/status/1844564967183319137 From 10/10/24, 'Live Town hall: Latinos Ask… Kamala Harris Responds (at 18:52 mark)
The Nevada Independent: 'At Vegas town hall, Harris faces questions from Latinos on immigration, health care' 'Harris touted the Biden administration’s efforts to have long COVID included as a disability under the Americans with Disabilities Act..'
Of course, a purely administrative thing with zero real-life benefits in 99%+ of cases and an insignificant, and expensive and difficult to achieve, impact on the few who can manage it. Very fitting response. It symbolizes very aptly how chronic illness is systematically disrespected and discriminated against. Any attempt at getting this enforced will be met with boilerplate "Long Covid is a new and mysterious condition" and a shrug of indifference about how they can't/won't do anything. Then you need to pay for expensive attorneys, which if you can afford you probably don't need its protections, and face years of wasted efforts for token gains. Glad that the issue was raised, but every single country has failed miserably at this. Every single one. The problem is with the health care industry, and they are not affected by elections nor swayed by growing evidence that they enabled a mass disabling event, promising pretty much the opposite.
Brown Daily Herald: 'COVID-19 declared endemic in RI as students continue to grapple with virus' “That’s not to minimize the risk of the suffering of people who already have long COVID..we’ve got to figure out how to take better care of them” - Ashish Jha, dean of the School of Public Health and the Biden Administration’s former White House COVID-19 response coordinator. "Votta contracted COVID-19 in February and was diagnosed with long COVID shortly after. “You just feel this level of exhaustion constantly that nothing alleviates,” Votta explained. “It doesn’t matter if you get a good night’s sleep. It doesn’t matter if you rest during the day. It never goes away.” For Votta, the loosening of pandemic-era public health policies renders disabled and vulnerable communities invisible. The fact that COVID-19 might not be “killing people outright doesn’t mean that it’s not disabling (people) still, and further disabling people who are already living with pre-existing disability,” she said."
ANCC (American Nurses Credentialing Center): 'Sigma Theta Tau & ANCC Announce Winner of the 2024 Evidence-Based Practice Implementation Grant' 'Sigma Theta Tau International Honor Society of Nursing (Sigma) and the American Nurses Credentialing Center (ANCC) are excited to announce the 2024 recipient of the Sigma/ANCC Evidence-Based Practice (EBP) Implementation Grant: an interprofessional team led by Nisha Mathews, PhD, MSN, RN, from the University of Houston-Clear Lake. Their award-winning project, titled “Community Insight to Clinical Care: A Nursing-Led Evidence-Based Patient Education Program for ME/CFS,” aims to improve care for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a patient-centered, evidence-based education program.' Dr. Mathews is joined by an interprofessional team, including: Jessica Ask, MSN, RN, Ambulatory Nurse Manager, Mayo Clinic Stephanie Grach, MS, MD, Assistant Professor of Medicine, Mayo Clinic-Rochester Jaime Seltzer, MS, Scientific Director, MEAction 'The winning team will be honored at the 2024 ANA Enterprise Research Symposium - Elevating Nursing Through Innovation and Research on October 29, 2024, in New Orleans, LA. This event is hosted by the ANA Enterprise Research Advisory Council and the ANA Enterprise Institute for Nursing Research & Quality Management.' 'Expected outcomes include improved patient engagement and enhanced quality of life for individuals with ME/CFS. This project will serve as a model for future patient-centered, evidence-based education programs in chronic disease management.'
https://twitter.com/user/status/1844788637969367486 Link: https://edition.pagesuite-professio...me=&edid=353dbd78-8163-4d2e-8db5-b270e1c0e938 (page 40-41)
Fortune: 'COVID-19 raises the stakes for heart attacks, strokes, and even death long after infection, new study finds' “These findings are undeniable and extremely troubling,” says David Putrino.. "How COVID-19 elevates the risk for cardiovascular problems is the subject of much study and conjecture. Research into long COVID has highlighted the disease’s deleterious effects on the body’s normal functions over time, and some of the same factors may well be at work here." "COVID-19 may lead to inflammation of endothelial cells (that line blood vessels),” says Ziyad Al-Aly, chief of research and development at VA St. Louis Health Care, whose previous work foretold many of the results from the U.K. Biobank study." Sandeep Das, co-chair of the American Heart Association’s COVID-19 CVD Registry committee and a director at UT Southwestern Medical Center in Dallas: “I think this study should perhaps push some people out of complacency and into thinking about their longer-term risk.” “You may have forgotten that you had COVID years ago, but it has not forgotten about you,” Al-Aly says, “Trivializing COVID as just a cold or an inconsequential nothing-burger is wishful thinking that does not align with scientific evidence.”
Forbes: 'New Research Provides Clues About Cause Of Long Covid' "There is no conclusive test for long Covid. There are no reliable treatment modalities for long Covid" "Long Covid remains a vexing problem. It is a very real, and potentially very debilitating outcome of SARS-CoV-2 infections. But like ME/CFS, it is difficult to diagnose and treat."
Contagion Live: 'Unmasking Long COVID Through Understanding Prevalence and Diagnosis' 'This Long COVID roundtable is a collaborative project from ContagionLive and NeurologyLive.' 'In this first episode, clinicians discuss the prevalence of Long COVID, its underestimation due to subclinical cases and recruitment challenges, and stress the importance of thorough history-taking for accurate diagnosis, especially regarding its overlap with ME/CFS..' Our panel of clinicians includes: Ravindra Ganesh, MD, MBBS, FACP, Dip ABOM, general medicine doctor at the Mayo Clinic and leader of their Long COVID clinic. Svetlana Blitshteyn, MD, FAAN, clinical associate professor of neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences, director of the Dysautonomia Clinic. Monica Verduzco-Gutierrez, MD, physical medicine and rehabilitation physician, professor, and chair of rehabilitation medicine at UT Health, leader of the Long COVID clinic.
Mother Jones: 'Tens of Thousands of People Are Dying on the Disability Wait List' 'Three years ago, after developing Long Covid, 62-year-old Martha applied for Social Security Disability Insurance..on Thursday..she asked VP Kamala Harris about the issue..' 'Harris, starting off on track, highlighted her recent push for Long Covid to be included in the Americans with Disabilities Act. But the vice president didn’t acknowledge the issue of wait times for federal disability benefit determinations, talking instead about how medical debt impacted credit scores.' 'Harris’ push to incorporate Long Covid into the ADA is welcome; it’s about time. Latino people are the likeliest of any racial group to report having Long Covid, according to Census data; many also participate in SSDI, and her Univision non-answer on wait times was eyebrow-raising.' 'But a Long Covid–friendly ADA doesn’t mean any change in Social Security practices, which are separate. Securing disability income is a much more complex, demanding process than securing ADA accommodations (which can be hard enough). Separate action is needed on both—and within Harris’ grasp, should she land in the White House.' 'That’s not to say that Democrats have made no moves to address challenges around Long Covid and Social Security disability delays. In August, a Senate group including Sen. Tim Kaine (D-Vir.), Sen. Ed Markey (D-Mass.), Sen Tammy Duckworth (D-Ill.), and Sen. Bernie Sanders (I-Ver.) sent O’Malley a letter asking a similar question: what was the Social Security Administration doing to address the barriers that applicants with Long Covid face? They have yet to receive a response—at least publicly.'
The Sick Times: “Kamala Harris responds to voter with Long COVID” “Harris responded with a lengthy answer that advocates and many people with Long COVID said was inadequate” “The Sick Times and The 19th reached out to the Harris campaign for comment on how the campaign will recognize and address Long COVID response but did not receive a response.”
