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.'
Nature: 'Four lessons COVID taught us about the immune system' 4. 'Hints at the cause of post-viral illness' 'How best to treat long COVID is just one of many unanswered mysteries in the wake of the COVID-19 pandemic'
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) This talk will be in two and a half hours. Link to register
The Hill by Janet Golden, Ph.D, Rutgers University: 'When infection disease becomes chronic: Lessons from COVID and beyond' 'Long COVID...is now a critical area of study for chronic disease researchers..the estimates of the incidence of long COVID among those infected in the U.S. is 14 percent' 'Treatments for infectious diseases often prevent the lifelong misery of chronic infections. Funding streams for both chronic and acute medical conditions are, and have always been, a critically conjoined public health need.' 'What long COVID will mean going forward for those of us who have been infected and continue to face infections is uncertain. What we can be sure of is that it is dangerous to view acute infectious disease and chronic disease funding as a competition.' 'At the same time, efforts to find treatments and cures for chronic diseases is vital. Research in both areas is integral to the public health enterprise.'
ABC News: 'Long COVID impacting more than 1 million children: CDC study suggests' ‘More than 1 million children may have been affected by long COVID in 2023, new federal data published Monday suggests.' 'Another theory is that virus particles may be persistently active, causing people to suffer long-term symptoms.' (I think [?] this is the associated JAMA reference)
Just FYI that link has an analytics tracker that connects referrals (sites have been known to sell this data to create social networks used for targeted advertising) https://abcnews.go.com/Health/long-covid-impacting-1-million-children-cdc-study/story?id=118393880 If you remove the “id” number at the end of the link it should work fine. Here’s a “clean” link: https://abcnews.go.com/Health/long-covid-impacting-1-million-children-cdc-study/story A lot of sites do this automatically when you share so don’t worry about it, but I’m just giving members the option to use a non-tracking link.
“Social Security Enshrines Remote Options for Disability Hearings: Pandemic accommodations made permanent as SSA seeks to reduce wait times” https://www.aarp.org/retirement/social-security/info-2024/remote-disability-hearings.html
Yale Medicine: 'A Scientist Unravels Clues in His Own Long COVID Battle' 'What he discovered—a critical clue about a specific antibody attacking his nervous system—didn’t just change his treatment plan. It highlighted the promise of precision medicine...'
Healio: 'On its 5th anniversary, experts address questions about COVID-19’ 'Koroshetz told Healio Infectious Disease News in January that future long COVID research should include consideration for ME/CFS, given that nearly 90% of people in the study who experienced the condition after COVID-19 also had been diagnosed with long COVID.’ '“We are concerned about the long-term health trajectory of affected people,” Al-Aly said. “We have individuals who have been suffering from long COVID for nearly 5 years and have not experienced any measurable improvement. There is a huge concern about the downstream implications — the 7-year, 10-year and 15-year health trajectory of these individuals — and potential reduction in life expectancy.”
https://www.nysenate.gov/legislation/bills/2025/J98 Source: State of New York Senate Resolution No. 98 Date: January 14, 2025 2025-J98 Commemorating the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York Sponsored By Roxanne J. Persaud (D) 19th Senate District text 2025-J98 Senate Resolution No. 98 BY: Senator PERSAUD COMMEMORATING the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York WHEREAS, It is the custom of this Legislative Body to recognize official days that are set aside to increase awareness of serious illnesses that affect the lives of citizens of New York State; and WHEREAS, Attendant to such concern, and in full accord with its long-standing traditions, this Legislative Body is justly proud to commemorate the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York; and WHEREAS, International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day is observed every year on May 12th to support and recognize people with this disease and other chronic immunological and neurological diseases by raising awareness and providing useful information; and WHEREAS, On May 12, 2025, people from across the world are encouraged to wear blue to raise awareness and show support for people with ME/CFS, their families and caregivers, and researchers who study this disease; and WHEREAS, ME/CFS is a serious, long-term illness that affects multiple body systems; people with this illness suffer from inability to perform usual activities associated with extreme fatigue, post-exertional malaise or PEM, sleep problems, and other problems with thinking and concentrating, pain, and dizziness; and WHEREAS, In 2018, it was reported 1 to 2.5 million Americans of all ages, races and genders are living with ME/CFS, and approximately 62,000-152,000 people in New York; and WHEREAS, Myalgic Encephalomyelitis persists for years or decades due to a lack of treatments, leaving 25% of patients housebound or bedbound, with many students unable to attend school and 75%-85% of patients unable to work, costing the economy of New York State millions of dollars; and WHEREAS, The National Academy of Medicine noted a lack of knowledge about the disease due to a lack of research and funding for research, owing largely to a lack of awareness of the disease; and WHEREAS, The National Academy of Medicine stated that as a result of this lack of awareness and research, many patients encounter medical professionals who doubt the existence of their disease and have tremendous difficulty being properly diagnosed and accessing appropriate medical care; and WHEREAS, ME/CFS is a tragic, disabling disease which destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers; and WHEREAS, It is imperative that there be greater awareness of this serious health condition, and more must be done to increase awareness and funding at the local, State and National levels; now, therefore, be it RESOLVED, That this Legislative Body pause in its deliberations to commemorate the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York. actions 09 / Jan / 2025 REFERRED TO FINANCE 14 / Jan / 2025 REPORTED TO CALENDAR FOR CONSIDERATION 14 / Jan / 2025 ADOPTED Resolution Details
Source: State of New York Senate Resolution No. 99 Date: January 14, 2025 Author: Governor Kathy Hochul of State of New York URL: https://www.nysenate.gov/legislation/bills/2025/J99 Memorializing Governor Kathy Hochul to proclaim May 2025, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York -------------------------------------------------------------------- WHEREAS, It is the custom of this Legislative Body to recognize official months that are set aside to increase awareness of serious illnesses that affect the lives of citizens of New York State; and WHEREAS, Attendant to such concern, and in full accord with its long- standing traditions, this Legislative Body is justly proud to memorialize Governor Kathy Hochul to proclaim May 2025, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York, in conjunction with the observance of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day; and WHEREAS, International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day is observed every year on May 12th to support and recognize people with this disease and other chronic immunological and neurological diseases by raising awareness and providing useful information; and WHEREAS, On May 12, 2025, people from across the world are encouraged to wear blue to raise awareness and show support for people with ME/CFS, their families and caregivers, and researchers who study this disease; and WHEREAS, ME/CFS is a serious, long-term illness that affects multiple body systems; people with this illness suffer from inability to perform usual activities associated with extreme fatigue, post-exertional malaise or PEM, sleep problems, and other problems with thinking and concentrating, pain, and dizziness; and WHEREAS, In 2018, it was reported 1 to 2.5 million Americans of all ages, races and genders are living with ME/CFS, and approximately 62,000-152,000 people in New York; and WHEREAS, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome persists for years or decades due to a lack of treatments, leaving 25% of patients housebound or bedbound, with many students unable to attend school and 75%-85% of patients unable to work, costing the economy of New York State millions of dollars; and WHEREAS, The National Academy of Medicine noted a lack of knowledge about the disease due to a lack of research and funding for research, owing largely to a lack of awareness of the disease; and WHEREAS, The National Academy of Medicine stated that as a result of this lack of awareness and research, many patients encounter medical professionals who doubt the existence of their disease and have tremendous difficulty being properly diagnosed and accessing appropriate medical care; and WHEREAS, ME/CFS is a tragic, disabling disease which destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers; and WHEREAS, It is imperative that there be greater awareness of this serious health condition, and more must be done to increase awareness and funding at the local, State and National levels; now, therefore, be it RESOLVED, That this Legislative Body pause in its deliberations to memorialize Governor Kathy Hochul to proclaim May 2025, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York; and be it further RESOLVED, That a copy of this Resolution, suitably engrossed, be transmitted to The Honorable Kathy Hochul, Governor of the State of New York.
American Association of Immunologists: “AAI Congressional Briefing Understanding and Combatting Long COVID: The Essential Role of the Immune System Wednesday, February 26, 2025 12:00 p.m. – 1:00 p.m. Hart Senate Office Building, Room 902 Washington, DC Co-Chairs Stephen Jameson, PhD, University of Minnesota Medical School, Twin Cities; AAI President Cherié Butts, Ph.D., Medical Director, Biogen; Chair, AAI Committee on Public Affairs Speakers: Akiko Iwasaki, Ph.D., Sterling Professor of Immunobiology; Professor of Dermatology and of Molecular, Cellular, and Developmental Biology and of Epidemiology; Director, Center for Infection and Immunity, Yale School of Medicine; AAI Past President E. John Wherry, Ph.D., Chair, Department of Systems Pharmacology & Translational Therapeutics; Richard and Barbara Schiffrin President's Distinguished Professor; Director, Institute for Immunology and Immune Health, University of Pennsylvania Lisa McCorkell, M.P.P., Co-founder of the Patient-Led Research Collaborative; Long COVID patient advocate “Please join The American Association of Immunologists for an enlightening presentation on the latest advancements in understanding and addressing Long COVID..” https://www.aai.org/Public-Affairs/AAI-Congressional-Briefing#gsc.tab=0
Daily Utah Chronicle: 'How the U’s Long COVID Clinic ‘Streamlines’ Patient Care' 'Utah is among the top 10 states experiencing high rates of long COVID. The U’s Long Covid Clinic helps those experiencing the condition by providing a range of treatments and connecting patients to specialists.' 'The clinic received $4 million from the state legislature in 2023. The expenditures came from the Coronavirus Aid, Relief and Economic Security Act (CARES Act)...Funding from the CARES Act lasts until 2026' 'Long COVID is not the only infection that can cause a disease state after recovery. Notable infection-associated conditions include post-dengue fatigue syndrome and post-Lyme disease syndrome, among others. Still, patients struggling with long COVID can feel invalidated by medical providers.' “the clinic has treated over 3,200 patients.”
I'm not sure since I'm not a patient at Utah's LC clinic. You could reach out to the science writer if you'd like to ask (https://dailyutahchronicle.com/staff_name/giovanni-radtke/). I was curious too with that line...I assume it's just what we all know already...or being a RECOVER site maybe Utah's clinic has a little runway for various trials (conjecture) https://twitter.com/user/status/1889831514084614326 From X: "Utah is among the top 10 states experiencing high rates of long COVID. The U’s Long Covid Clinic helps those experiencing the condition by providing a range of treatments and connecting patients to specialists."
Winter 2025, Issues in Science & Technology, the magazine of The National Academy of Sciences - “Centering Patients in Long COVID Research” By Brian Vastag (H/T @B_V) https://issues.org/long-covid-research-vastag/ From Brian's Mastodon (https://mastodon.social/@brianvastag@sciencemastodon.com/113986591087263037): "Out now: My article on the importance of centering patients in #LongCovid research, published in Issues in Science & Technology, the magazine of The National Academy of Sciences. The NIH program to find treatments for long covid, RECOVER-TLC, appears to be much more tuned into patients than the earlier RECOVER study. Because this program operates with dedicated funding outside normal NIH procedures, it appears insulated from the Trump vandals for now."
