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.”
