4/14/25, TEDx Talk: "I Am One of the Millions Missing | Maggie Boxey" "Do you know one of the millions missing? For those with disabling chronic illnesses, it can feel like they are invisible, watching their lives from a remote distance. In this emotional talk, author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option." "I first got sick in July of 2020 during the COVID-19 pandemic. At the time I swore it was COVID - my symptoms were neurological, the headaches were excruciating, my skin was on fire with buzzing and severe itching. The fatigue and brain fog were like nothing that I had experienced before. All my labs were normal - my doctors assumed that I would eventually get better as long as I kept pushing and trying harder..." "...you're probably familiar with Long COVID. It's a chronic disease that occurs after a COVID-19 infection where symptoms are present for three months or more. About half of those with Long COVID meet the diagnostic criteria for ME, so the amount of people with ME in the United States could be more like five to nine million." "...the hallmark symptom of ME is called PEM or post-exertional malaise. People with ME call this a crash. This means our symptoms worsen after minimal physical or cognitive activity or even with sensory overload.."
Stats News 4/15/25: RFK Jr. plans changes to vaccine injury reporting system The HHS secretary has long questioned the adequacy of the current system WASHINGTON — Health secretary Robert F. Kennedy Jr. said Tuesday that he plans to roll out changes to the vaccine injury monitoring system that would automate and increase data collection as well as look for negative impacts of the shots. Reforming the current Vaccine Adverse Event Reporting System has long been part of Kennedy’s agenda to raise questins about the safety of immunizations that are currently in use. While the general idea of improving the system is uncontroversial, Kennedy has exaggerated the extent to which side effects of vaccinations go unrecorded, according to researchers.
PolyBio: 'Chan Soon-Shiong Family Foundation donation expands PolyBio Long COVID program' Funds will support exploration of SARS-CoV-2’s potential to drive cancer, as well as continued work delineating persistence of the virus in long COVID tissue, including therapies to optimally clear persistent virus
Psychology Today: 'I'm the Mom, But No One Listened to Me' 'Personal Perspective: My kid got sick. I was dismissed. My voice mattered most.' 'Kids with Long COVID aren't lazy. They're sick.' 'Today, invisible illnesses like long COVID and chronic fatigue are the new frontline in an age-old information war. But in this fight, moms are set up to fail.'
Spectrum News 1: 'Leading long COVID researcher fears it could become a national epidemic' “They go to the doctor, they test and they get told good news, everything tested normal, which is not good news for someone who is feeling as terrible as most people with long COVID feel" - Dr. David Putrino One of those people was Nicole Lopez-Jantzen, who used to run marathons, and now can barely walk her dog. “I’m tired right now," she said on a walk with NY1 just across the street from her apartment in Queens. "My energy just goes down, down. And then I have to go lie down.” "Seventy percent of people with long COVID have something called autonomic dysfunction, meaning that we have a part of our nervous system, this is the part of your nervous system that controls all the things you don’t usually think about that’s under autonomous control," he said. Someone with long COVID will feel overexerted just from sitting. "What we saw in people with long COVID is they were burning 20, 30 percent more energy than someone that we would expect for their height, weight, gender and age," he said. "So even though we were asking them to sit very still and not use any energy at all, their bodies were working really, really hard to maintain that."
CIDRAP: 'Episode 181: Public Health Policy Is Political' In "Public Health Policy Is Political" 'Chris Dall and Dr. Osterholm discuss the ongoing measles outbreak, the latest round of job cuts in the public health workforce, and new studies on long COVID' Osterholm: “Other research suggests that muscles of long COVID patients aren't able to extract the proper amount of oxygen from the blood, and that the mitochondria, often referred to as the powerhouse of the cell, may not work at full capacity in long COVID patients, also hindering muscle tissue. All this is why we have so often described long COVID as a complex puzzle, an understatement, with many, many missing pieces. But each study uncovers another piece, helping us get closer to seeing the full picture, and ultimately finding treatments for this condition that have impacted so many lives.” “We also have more to learn about the cause of circulatory long COVID symptoms, which can include fatigue, shortness of breath, and exercise intolerance. Just as with other long COVID symptoms, researchers believe that the inflammation is a key factor, potentially damaging the nerve fibers in our body that control the squeezing ability of blood vessels, ultimately resulting in reduced blood flow.” “Finally, I want to say to all our listeners who are struggling with long COVID, we see you, we read all the impactful messages you share with us, and now more than ever, we will continue to advocate for you.”
Some screenshots shared in thread below in X from LA County's Long COVID Town Hall event tonight, for any interested in viewing https://twitter.com/user/status/1913044440878285280 From X: 'Tuning into Los Angeles County Public Health's 'Public Health Virtual Town Hall on Long COVID' tonight' 1-hour recording here: https://www.youtube.com/watch?v=RfFtmCHtw8Q
Source: 132nd Maine State Legislature H.P. 1123 Dale: April 17, 2025 URL: https://legislature.maine.gov/legis/bills/getPDF.asp?paper=HP1123&item=1&snum=132 FIRST SPECIAL SESSION-202 ------------------------- An Act to Encourage Continuing Education Relating to Certain Infection-associated Chronic Conditions for Physicians and Nurses Reference to the Committee on Health Coverage, Insurance and Financial Services suggested and ordered printed. Presented by Representative RANA of Bangor. Cosponsored by Senator STEWART of Aroostook and Representatives: JULIA of Waterville, MATHIESON of Kittery, ROEDER of Bangor, Senators: BAILEY of York, INGWERSEN of York Be it enacted by the People of the State of Maine as follows: (...) Sec. 1. 32 MRSA paragraph 2158 is enacted to read: Paragraph 2158. Medical education relating to infection-associated chronic conditions The board shall encourage a licensee or applicant for relicensure under this chapter to attend continuing education, including continuing education required for licensure of an advanced practice registered nurse, relating to infection-associated chronic conditions, including long COVID, chronic Lyme disease, myalgic encephalomyelitis, postural orthostatic tachycardia syndrome and dysautonomia. (...) Sec. 2. 32 MRSA paragraph 2581, as amended by PL 2017, c. 189, paragraph 1, is further amended by enacting at the end a new paragraph to read: The board shall encourage a licensee or applicant for relicensure to attend continuing education approved by the board under this section relating to infection-associated chronic conditions, including long COVID, chronic Lyme disease, myalgic encephalomyelitis, postural orthostatic tachycardia syndrome and dysautonomia. (...) Sec. 3. 32 MRSA paragraph 3280-A, sub-paragraph 5 is enacted to read: 5. Continuing medical education relating to infection-associated chronic conditions. The board shall encourage a licensee to attend continuing medical education under subsection 2, paragraph B, relating to infection-associated chronic conditions, including long COVID, chronic Lyme disease, myalgic encephalomyelitis, postural orthostatic tachycardia syndrome and dysautonomia. (...) SUMMARY This bill requires the Board of Osteopathic Licensure, the Board of Licensure in Medicine and the State Board of Nursing to encourage licensees and applicants for relicensure to attend continuing education relating to infection-associated chronic conditions, including long COVID, chronic Lyme disease, myalgic encephalomyelitis, postural orthostatic tachycardia syndrome and dysautonomia.
