Washington State Standard: 'Washington sues over RFK Jr.’s canceled health funding' 'One of the specific programs affected is Care Connect,..the program later shifted to meet the needs of those suffering from long COVID, among other things'
3/27/25, "From Make Visible: Understanding Complex Illness: "Chronic Overlapping Pain Conditions in ME/CFS, new insights with the C.D.C’s Dr Elizabeth Unger, Yang Chen & Elizabeth Fall" Unger: “I think identifying biologic sub-groups that are going to be responsive to therapies, that's the thing that's most exciting to me.”
The Atlantic: 'Long-COVID Care Is Disintegrating' 'Access to clinics has only gotten patchier as attention to the disease has faded'
‘Long-overdue Crack in the Dam’: RFK Jr. to Create CDC Sub-agency Focused on Vaccine Injuries Vaccine safety advocates hailed HHS Secretary Kennedy’s plan to create an agency within the CDC focused on vaccine injuries and also long COVID and Lyme disease. In an interview with Chris Cuomo, Kennedy also revealed that when he asked an HHS agency for patient data, he was told he’d have to purchase it. https://childrenshealthdefense.org/defender/rfk-jr-hhs-secretary-cdc-sub-agency-vaccine-injuries/
No idea whether good information or not is being taught: NEWS RELEASE 31-MAR-2025 Virtual Long COVID training educates pediatric healthcare providers nationwide Kennedy Krieger’s innovative ECHO program strengthens clinician knowledge and confidence Peer-Reviewed Publication KENNEDY KRIEGER INSTITUTE https://www.eurekalert.org/news-releases/1078842
Source: Minnesota Senate Health and Human Services Committee Auuthor: DIBBLE, Boldon and Gustafson Date: March 27 and April 1, 2025 URL: https://legiscan.com/MN/text/SF3179/id/3194838/Minnesota-2025-SF3179-Introduced.pdf [Introduction and first reading] Minnesota Senate Bill 3179 -------------------------- A bill for an act relating to health; requiring issuance of grants by the commissioner of health to support education and outreach for myalgic encephalomyelitis/chronic fatigue syndrome; requiring the commissioner of health to establish a ME/CFS program; requiring issuance of grants by the commissioner of human services to establish and improve access to social services for myalgic encephalomyelitis/chronic fatigue syndrome; requiring a report; appropriating money. Section 1. MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME GRANTS. Subdivision 1. Grants authorized. (a) The commissioner of health must award grants to increase awareness and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) among health care professionals, individuals diagnosed with ME/CFS, individuals with symptoms of ME/CFS and who believe they may have ME/CFS, health plan companies, and the public. The commissioner must issue a request for proposals to competitively determine grant recipients. The grants may be awarded to community health boards as defined in Minnesota Statutes, section 145A.02, subdivision 5, state agencies, state councils, or nonprofit corporations. (b) The commissioner must develop the request for proposals, review the resulting proposals, and determine grant awards in consultation and cooperation with members of the ME/CFS community. (c) The commissioner may contract with members of the ME/CFS community to perform all or part of the grant award process required under this subdivision. (d) For purposes of this subdivision, 'members of the ME/CFS community' means the following persons among others: (1) health care providers familiar with the diagnosis, treatment, and awareness of ME/CFS; (2) individuals diagnosed with or having symptoms of ME/CFS; and (3) other individuals with subject matter expertise on ME/CFS. Subd. 2. Use of grant funds. (a) Grant recipients must use grant funds to do one or more of the following: (1) improve the availability of free, evidence-based, or community best practice educational materials on ME/CFS to health care professionals, human resource professionals, and individuals with ME/CFS symptoms; (2) raise awareness among health care professionals about ME/CFS symptoms and the importance of an appropriate ME/CFS diagnosis, symptom management, identification of associated comorbidities, and pharmacological treatment options; and (3) increase public awareness of ME/CFS, ME/CFS symptoms, available community resources, and practices and techniques to effectively access and navigate community resources for those experiencing the effects of ME/CFS. (b) The commissioner must provide technical assistance and support to grant recipients to improve outreach and education, especially in greater Minnesota, Tribal Nations, and marginalized communities, such as Black, Indigenous, Hispanic, Asian, and other people of color, LGBTQ+ community, and those experiencing economic insecurity, and other groups where services to address the effects of ME/CFS have not been established. Sec. 2. MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME HUMAN SERVICES GRANTS. Subdivision 1. Grants authorized. (a) The commissioner of human services must award grants to establish and improve access to services for individuals experiencing effects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The commissioner must issue a request for proposals to competitively determine grant recipients. The grants may be awarded to community health boards as defined in Minnesota Statutes, section 145A.02, subdivision 5, state agencies, state councils, or nonprofit corporations. (b) The commissioner must develop the request for proposals, review the resulting proposals, and determine grant awards in consultation and cooperation with members of the ME/CFS community. (c) The commissioner may contract with members of the ME/CFS community to perform all or part of the grant award process required under this subdivision. (d) For purposes of this subdivision, 'members of the ME/CFS community' means the following persons among others: (1) health care providers familiar with the diagnosis, treatment, and awareness of ME/CFS; (2) individuals diagnosed with or having symptoms of ME/CFS; and (3) other individuals with subject matter expertise on ME/CFS. Subd. 2. Use of grant funds. (a) Grant recipients must use grant funds to establish or facilitate access to one or more of the following services for individuals diagnosed with, or seeking a health care or integrative care professional's evaluation for symptoms of, ME/CFS: (1) professional or peer delivered supportive counseling, such as counseling for an individual with symptoms of ME/CFS and caregivers or family members of an individual with symptoms of ME/CFS; (2) professional or peer delivered health education; (3) care coordination; (4) medical case management, including but not limited to coordination of medical equipment and home health services; (5) health or social service transportation services; (6) outpatient ambulatory services; (7) social work; (8) financial assistance; (9) legal and other nonmedical case management; (10) referrals for supportive services; (11) practical support home services, such as assistance with cooking, laundry, and cleaning; (12) workplace and disability accommodation counseling and navigation services; and (13) professional or peer-led support groups for people with ME/CFS symptoms, family members, and caregivers. (b) The commissioner must provide technical assistance and support to grant recipients to improve outreach and the provision of services, especially in greater Minnesota, Tribal Nations, marginalized communities, such as Black, Indigenous, Hispanic, Asian, and other people of color, LGBTQ+ community, and those experiencing economic insecurity, and other groups where services to address the effects of ME/CFS have not been established. Sec. 3. ME/CFS PROGRAM. The commissioner of health must establish a program to conduct community assessments and epidemiologic investigations to monitor and address impacts of ME/CFS and related conditions. The purposes of these activities are to: (1) monitor trends in: incidence, prevalence, mortality, and health outcomes; changes in disability status, employment, and quality of life; service needs of individuals with ME/CFS or related conditions and to detect potential public health problems, predict risks, and assist in investigating health inequities in ME/CFS and related conditions; (2) more accurately target information and resources for communities and patients and their families; (3) inform health professionals and citizens about risks and early detection; (4) promote evidence-based practices around ME/CFS and related conditions prevention and management, and to address public concerns and questions about ME/CFS and related conditions; (5) identify demographics of those affected by ME/CFS, including but not limited to: (i) gender; (ii) race; (iii) age; (iv) geographic location; (v) economic status; and (vi) education; and (6) research and track related conditions. Sec. 4. REPORT TO THE LEGISLATURE. The commissioners of health and human services must submit a report by December 1, 2027, to the legislative committees with jurisdiction over health and human services on the effectiveness of the ME/CFS grants established in section 1 and the ME/CFS human services grants established in section 2. The report must include but is not limited to information on: (1) the ability of grant recipients to achieve the objectives set forth in section 1, subdivision 2, paragraph (a), clauses (1) to (3), and section 2, subdivision 2, paragraph (a), clauses (1) to (13); (2) additional areas of need for ME/CFS diagnosis, treatment, symptom management, insurance coverage, and access to health or integrative providers and social services; (3) recommended legislative action and a five-year written plan to improve ME/CFS outcomes, based on quality of life indicators and deliverables from the grants awarded in sections 1 and 2, in Minnesota; and (4) findings from data collection under the program in section 3, including but not limited to: (i) demographics, including but not limited to those set forth in section 3, clause (5); (ii) common challenges; (iii) gaps in services; (iv) disease impacts on individuals, other than economic effects; and (v) future community needs. Sec. 5. APPROPRIATIONS. Subdivision 1. ME/CFS grants.$....... in fiscal year 2026 is appropriated from the general fund to the commissioner of health for grants to increase awareness and understanding of ME/CFS among health care professionals, individuals diagnosed with ME/CFS, individuals with symptoms of ME/CFS and who believe they may have ME/CFS, health plan companies, and the public. This is a onetime appropriation and is available until June 30, 2028. Subd. 2.ME/CFS human services grants.$....... in fiscal year 2026 is appropriated from the general fund to the commissioner of health for grants to improve access to services for individuals experiencing effects of ME/CFS. This is a onetime appropriation and is available until June 30, 2028. Subd. 3. ME/CFS program. $....... in fiscal year 2026 is appropriated from the general fund to the commissioner of health for a program to conduct community assessments and epidemiologic investigations to monitor and address impacts of ME/CFS and related conditions. This is a onetime appropriation and is available until June 30, 2028.
Source: House of Representatives 104th General Assembly State of Illinois Date: March 28, 2025 Author: Rep. Robyn Gabel URL: https://www.ilga.gov/legislation/fulltext.asp?SessionId=114&DocTypeId=HR&DocNum=223&GAID=18 Illinois House Resolution 223 ----------------------------- Declares May 12, 2025 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day HOUSE RESOLUTION WHEREAS, Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a complex, debilitating neurological and immunological disease that affects millions worldwide, including an estimated two to three million people in the United States; and WHEREAS, ME/CFS is characterized by profound fatigue, post-exertional malaise, a worsening of symptoms after even minor exertion, cognitive impairment 'brain fog', chronic pain, immune dysfunction, dizziness, and a range of other disabling symptoms that significantly reduce quality of life; and WHEREAS, ME/CFS can affect individuals of all ages, genders, and backgrounds, often leaving patients bedridden or housebound for years or even a lifetime, with only a small percentage achieving full recovery; and WHEREAS, Scientific research has demonstrated that ME/CFS is a serious, multi-system disease, yet it remains underfunded, under-researched, and widely misunderstood, contributing to significant delays in diagnosis, limited treatment options, and ongoing stigma for patients; and WHEREAS, Over 65 million people worldwide, including those suffering from long COVID and other post-viral conditions, now face similar challenges, highlighting the urgent need for increased biomedical research, healthcare provider education, and public awareness of infection-associated chronic conditions; and WHEREAS, The economic impact of ME/CFS in the U.S. alone is estimated to be in the hundreds of billions of dollars annually due to lost productivity, medical costs, and the need for full-time caregiving; and WHEREAS, Recognizing ME/CFS and related conditions as serious public health concerns will help accelerate research funding, improve clinical care, and promote policies that support affected individuals and their families; therefore, be it RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare May 12, 2025 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of Illinois in recognition of the millions of people living with ME/CFS and related post-infectious diseases; and be it further RESOLVED, That suitable copies of this resolution be presented to Gabriel Henry Hull and his mother, Rebbeca Groble Hull.
In case anybody does not know, Children's Health Defense (Wikipedia article) is the organisation JFK Jr. helped set up and run to promote scepticism about vaccines and other some public health measures like fluoridation of water supplies.
2/11, Make Visible: Understanding Complex Illness: “Exploring the drivers of post-infectious illness, with Harvard Neuroimmunologist Michael VanElzakker” “Where with ME, I don't really think that what happens in most cases is that there's a trigger that is then gone but then has lasting effects. I suspect in the words of the NIH's recent study that I know people criticize, but there were some parts that people should notice like persistent antigenic stimulation.”
“Lipkin is personally donating money to help keep a small portion of the research afloat, but this barely covers a single employee and some supplies, he said.”
Univ. of Utah: 'Ever curious but often distracted is how Clayton Powers would describe himself—and he’ll tell you he never cared much for school' 'Determined to help, he dedicated his free time studying conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which causes extreme fatigue, muscle weakness, and brain fog—often linked to long COVID. After a global pandemic, some COVID survivors were affected long-term, potentially forever, with new symptoms of dizziness and unrelenting fatigue. Clayton quickly realized that traditional treatment methods—like exercise—were not working for his patients. Instead, he changed his approach to focus on personalized treatment plans that focus on pacing energy, calming the nervous system, and improving blood flow.' 'These new insights into personalized PT treatments led Clayton to educate physical therapists worldwide and partner with the Bateman Horne Center, a Salt Lake City research and clinical care facility that focuses on patients with multi-symptom chronic complex diseases.
Literary Hub by Jessie Chaffee: 'A Single Ray of Light: On Ray Bradbury’s “All Summer in a Day” and Living in the Shadow of Long COVID' 'I’ve felt isolated in this experience, but I am not alone. I’ve felt invisible, but there are activists like the three women testifying—and all the advocates beside them—who, despite the prisons of their bodies, have found a way to make their voices heard, to ensure that people are noticing the missing.'
Waverly Newspaper: 'Forging our Future Together: Get serious about long COVID, vaccines' 'Many of us talk about COVID in the past tense, but for roughly 7% of Iowans suffering from Long COVID like me, the pandemic never ended' 'I can't always think straight (brain fog). If I do too much stuff on any given day I get flu-like symptoms including crushing fatigue…for days sometimes. (This is called PEM, or Post Exertion Malaise.)' 'I'm writing this with three hopes. First, know there are people around you suffering from Long COVID that need your support. Second, please get vaccinated. Do it for people like me, who are one infection away from being severely disabled. Do it for the people you care about so that they can avoid Long COVID. Do it for yourself. You don't want what I have, trust me. Third, please contact both your state and federal representatives and let them know how important access to vaccines is to you, and the people you care about.'
New York Times - Wirecutter: 'Most Wearables Prompt You to Move More. This One Helps You Avoid Overdoing It.' 'Pacing is key to Visible’s approach' 'The signature symptom of long COVID and ME/CFS is post-exertional malaise'
How Family Physicians Can Better Diagnose and Treat Long COVID https://www.aafp.org/news/health-of-the-public/long-covid-treatment-diagnosis.html “The best way to prevent long COVID is to prevent COVID,” Herman explains. “Anything you can do to prevent COVID prevents long COVID. We also know that people that get multiple COVID infections are more likely to develop long COVID. Someone who's had one COVID infection is less likely to get long COVID compared to somebody that's had three or four or five or six acute episodes of COVID.” One vital step toward that prevention is to advise patients to stay up to date with COVID vaccinations. Additionally, some studies indicate that treatment with nirmatrelvir/ritonavir (Paxlovid) during an acute COVID infection can prevent some patients from ending up with long COVID. Herman says the best way to help patients who have long COVID recover is to help them avoid post-exertional malaise and build stamina through pacing. The first step is to stop post-exertional malaise by working with patients to establish an understanding of their “body battery.” From there, they can work to build stamina and rebuild the basic mitochondrial capabilities of their cells. For individuals with other comorbidities, such as POTS (postural orthostatic tachycardia syndrome) ensuring proper salt and fluid intake, as well as using medicines to treat other symptoms, can be important tools.
Mother Jones: 'For Some Disabled Protestors, “Hands Off” Went Virtual' “We know we have to teach everyone how to include us.” 'At a Hands Off rally for people with Long Covid, Amanda Finley was filled with emotions.'
Dance Magazine: “Often Confined to His Bed, a Chronically Ill Dancer Reflects on the Joy of Kinesthetic Empathy” ‘ME/CFS is a complex, multisystem illness that stole my ability to wake up feeling rested, think clearly..’ https://t.co/H6dgRoK07Q
Bloomberg: 'Should You Worry About Your Brain Fog?' 'The impairment, often associated with long Covid, doesn’t mean you’re more likely to get dementia or Alzheimer’s..' 'The phrase “brain fog” has exploded in our collective lexicon in recent years..'
LA ist: “The future of Long COVID research is unknown, five years after the start of the pandemic” (20 minute audio interview) 'The future of Long COVID research is unknown, five years after the start of the pandemic' 'Today on AirTalk, we'll take a look at the latest Long COVID research and what challenges future research faces. Joining us to discuss is Dr. Kimberly Shriner, Director of Infectious Disease and Prevention at Huntington Hospital in Pasadena and Emily Taylor, President and CEO SolveME Initiative and Co-Founder of the Long Covid Alliance.' Some excerpts: Host: “Have we gotten any answers at this point? Shriner: "It's been glacially slow, but we're persisting. And I think that it's beginning to kind of hone down on four major reasons for Long Covid, but we're certainly open to other possibilities. It certainly is in some sort of chronic inflammation and immune dysfunction.” “Most of the patients have some sort of fog, neurologic fog where they have trouble doing executive thinking. Many of them have chronic fatigue...some folks have dysfunction of their cardiac regulatory system, that's called autonomic dysfunction." “if there's maybe one good thing that came out of Covid, it's that we do have a better understanding of post-infectious viral syndromes that can cause chronic fatigue syndromes and other kinds of pain and neurocognitive issues. So I think there's really a lot to be gained and learned by studying Long Covid over the course of addressing some of these other diseases.” Emily: “In the research space, we are really excited to see finally some progress towards clinical trials and therapies that can hopefully go bench to bedside. But as Dr. Schriner said, that it has been glacially slow and the progress has been really frustrated and only disrupted and the uncertainty around funding cuts has really caused a massive ripple in both the community and the research space and obviously for clinical care as well.” “We are so close to kind of cracking this thing. And to have, at that moment, the rug pulled out from you in the form of these government cuts and funding losses, I think there is absolutely hope. I am so proud to represent an organization that provides private research grants and sort of fills those gaps as best we can”
Medscape: 'Long COVID Cuts Imperil Treatment Progress, Researchers Warn' “Millions of Americans are suffering, and they are depending on us for new treatments and care,” said Grace McComsey, MD, who leads one of the 15 nationwide long-COVID centers funded by the federal RECOVER Initiative in Cleveland. Data from RECOVER found that people with long COVID were more than twice as likely to have viral remnants in their blood, said McComsey. “There was a promise that we would focus on chronic diseases, and long COVID is a chronic disease with more than a million people disabled as a result of it,” said McComsey.
