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‘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/
 
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.
 
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Nightsong said:
Article in Salon today:

"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again
Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"

https://www.salon.com/2025/04/01/ad...earch-abandons-long-and-mecfs-patients-again/
Click to expand...
“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.” :thumbup:
 
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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.
 
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.'
 
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.
 
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”
 
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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.
 
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