News from the USA, United States of America

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.'
 
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Dakota15 said:
ABC News: 'Long COVID impacting more than 1 million children: CDC study suggests'

'Another theory is that virus particles may be persistently active, causing people to suffer long-term symptoms.'
Click to expand...
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.
 
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

https://twitter.com/user/status/1888994776894050753
Click to expand...
 
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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.

https://twitter.com/user/status/1888996420684071365
Click to expand...
 
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
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.”
 
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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."
 
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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."
 
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Winter 2025, Society for Neuroscience - 'Future of Neuroscience: Ya’el Courtney'

Ya’el Courtney is a PhD candidate in neuroscience at Harvard Medical School

'After an immunology postdoc, she aims to lead a lab focused on mitigating post-infection brain effects, providing hope for those impacted.'

'I found online forums of people noting similar cognitive impairments after a viral infection....I’ve become integrated in these patient communities for people with long COVID..people with ME/CFS..'

'Moving forward, I’m hoping to study the effects of viruses on the brain post-infection. I don't know why I recovered following my undergrad mono and strep infections compared to someone else who didn’t. My life goal is to figure that out and help the people who are on disability, who cannot work, who can't function, who are not living the life that they used to live because of these mysterious post-viral infection disorders.'

'A key part of my success came from funded summer research programs. I did the Blueprint Initiative Enhancing Neuroscience Diversity through Undergraduate Research Education Experiences (ENDURE), which is funded through NINDS'

https://twitter.com/user/status/1890539454672056630
 
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Mercury News: 'Bay Area long COVID sufferers battle mysterious symptoms and medical skepticism'

'Millions of patients nationwide are often left scrambling to find doctors who take their symptoms seriously — and can find an effective treatment'

'Her initial fever and cough contorted into crushing fatigue, brain fog, blurred vision, dizziness, chest pain and more — and the debilitating symptoms never left.'

'Hooper’s experience is all too common. An estimated 17 million adults in the United States have long COVID, according to the CDC..'

'Dr. Hector Bonilla, co-director of the Stanford PACS clinic, sees 15 to 20 long COVID patients a week'

“Medical societies need to reach out for help in educating their providers on chronic illnesses like long COVID and ME/CFS,” said Jaime Seltzer, a researcher at Stanford Medicine — which is not affiliated with the PACS clinic — and scientific director for #MEAction, a nonprofit organization advocating for chronic illnesses.'
 
I'm surprised that Amy, who I believe had some mild post-viral syndrome once, is framing long-covid like hiv, presumably because of her belief that viral persistence is the driver and causing multiple consequences, and also because that's the way to get her the funds she wants? Most of the LC cases I see on Twitter are so ME or CFS-like (I regard the two as different /overlapping concepts) , although that might just reflect Twitter circles, And this way of framing long covid is that Anything that covid triggers is in the "in group" to be researched which urgency and anything outside of it is , well, out of it. M,e is mentioned as something that might also benefit, (perhaps years down the line though, who is even looking at viral persistence in m,e? & we are all lumped together, whatever the course or trigger) and Yet she refers to m.e and Lyme researchers as being in a battle to understand them. Afaics, in the US, most ME scientists have jumped ship to follow the money (because yes, big sums of money do entice researchers) and the NIH is turning down the dial on m,e research to simmer level.
 
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The News-Item: 'Dear Secretary Kennedy, cure long COVID'

'My daughter has it. It is a nightmare, and there is currently no cure. We need you, Secretary Kennedy.'

"...you get post-exertional malaise (PEM), also known as “crashing.”

'Long COVID is an umbrella term for a host of symptoms that come after a COVID infection. Long COVID has many symptoms in common with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia and postural orthostatic tachycardia syndrome (POTS). Research estimates that half the people with long COVID meet ME/CFS diagnostic criteria'
 
For what it's worth, and I doubt it's much, the billionaire owner of the LATimes, a physician who made a fortune selling cancer drugs, is all in on the MAGA train, has been trying to get a position in the cabinet, and seems to be very focused on two issues for the future: cancer and Long Covid. Not my impression, he's been Xitting a lot about it. The first makes sense, it's how he got rich, LC I don't know why.

I doubt anything useful would come out of it, but it's worth monitoring, maybe approaching him. I don't see him as an ally, but he could be useful. Perhaps more as a workforce issue. For all the physical impairment that LC is responsible for, it's the brain fog that is the most important problem, given that this is now an intelligence economy. Brain fog is very bad for an innovation economy.
 
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