News from the USA, United States of America

We discussed this back in May in the Long Covid social media thread when he had just shared the news about his Long Covid. But it was early days then since the acute infection, and he's said in his podcast that he is now fully recovered. So I'm unsure how precise it is to call it Long Covid even though he struggled for a couple of months after the infection. Anyway, very glad that he's now back to normal again!
 
HHS Announces the Formation of the Office of Long COVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative
Current analysis estimates that 7.7 million to 23 million Americans have developed Long COVID.
“The Office of Long COVID Research and Practice will enhance efforts being undertaken across the U.S. government to improve the lives of those who continue to experience the long-term impacts of the worst public health crisis in a century,” said Adm Rachel Levine, M.D. “Bringing together the resources and expertise of federal, state, and local partners, patients, providers, researchers, and the business sector to answer the American peoples most urgent calls to action.”
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Background on the Office of Long COVID Research and Practice:

The Office of Long COVID Research will be located within HHS’s Office of the Assistant Secretary for Health under the leadership of the HHS Assistant Secretary for Health, Admiral Rachel Levine. The Office is charged with on-going coordination of the whole-of-government response to the longer-term effects of COVID-19, including Long COVID and associated conditions and the implementation of the National Research Action Plan on Long COVID - PDF and the Services and Supports for Longer-Term Impacts of COVID-19 - PDF. Currently 14 federal departments engage on Long COVID, including over a dozen HHS Operating and Staff Divisions with a goal to reduce the impacts of Long COVID by improving quality of life for people living with Long COVID and reducing disparities related to Long COVID.
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https://www.hhs.gov/about/news/2023...inical-trials-through-recover-initiative.html


Biden administration opens new office to study long COVID response, NIH begins clinical trials
An estimated 7.7. million to 23 million Americans have long COVID.

Video that goes with the article has the following caption at 1.30:
EXPERTS ALSO SUGGEST LONG COVID PATIENTS AND THEIR FAMILIES CREATE A FINANCIAL PLAN TO PREPARE FOR A LENGTHY ILLNESS.
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https://abcnews.go.com/Health/biden...ew-office-study-long-covid/story?id=101873413


Biden administration announces launch of HHS office focused on long Covid research

https://www.cnn.com/2023/07/31/health/long-covid-research-office/index.html

The CNN article uses a picture from the Millions Missing protest in front of the White House.

Edited to add first quote box. It was temporarily lost in my executive function!
 
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A Paradigm Shift in Research for Infection-Associated Illnesses, 2023, Ryan Prior

More than three years out from the beginning of the COVID-19 pandemic, scientific authorities continue to monitor Long COVID, the syndrome comprising the disabling aftereffects of SARS-CoV-2 that can last for months and years after one’s initial infection.

If public health policymakers are to fully learn the profound lessons about human biology and pandemic resilience that this crisis has presented, it means grappling with the reality of complex, chronic illness as an outcome of any infection, whether it be viral or bacterial.

To do so, it’s time to establish and fully fund an Office at the National Institutes of Health (NIH) solely dedicated to researching infection-associated chronic illness.
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This summer, the National Academy of Science, Engineering and Medicine held a landmark workshop intended to establish a national research agenda for infection-associated chronic illnesses.

Held on June 29 and 30 in Washington, D.C., the event brought together scientists and advocates working on a host of infection-associated chronic diseases, including Long COVID, multiple sclerosis, persistent Lyme disease, myalgic encephalomyelitis, and fibromyalgia.
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In an opinion essay about Long COVID last summer, the New York Times’ Zeynep Tufecki called for the creation of a “National Institute for Postviral Conditions,” modeled after the National Cancer Institute.

Such a bold vision is admirable. But homing in on the specific category of conditions is critical. While those with Long COVID are experiencing a post-viral condition, those with post-treatment Lyme disease syndrome were sickened by a Borrelia burgdorferi, which is a bacterium rather than a virus. Further, Lyme and Long COVID are driven by pathogens capable of persisting in reservoirs in the body—as a growing body of research seems to point—the conditions might not be post-infectious at all. They may be the result of hidden pathogens that biomedical science has so far just not yet had the tools to detect.

Finally, many people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) either cannot identify the original virus that threw their nervous systems and immune systems into a yearslong tailspin
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Large funders and advocacy groups are organizing around the idea as well. The Long Covid Alliance, in partnership with Solve M.E., recently launched a new push for what it calls the Office of Infection-Associated Chronic Illness Research, or “Office of IACIR.” That effort could have galvanizing power, as the CDC Foundation recently awarded a grant for patient advocacy organizations for the various diseases to create partnerships and convene meetings to set a common advocacy agenda.
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https://tcf.org/content/commentary/a-paradigm-shift-in-research-for-infection-associated-illnesses/
 
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I think there may be merit to an Office of IACIR. But this should not be business as usual in terms of selecting the researchers who work there. I think a well-vetted patient task force should be formed that has a large amount of influence into who populates that institution in terms of researchers.

If it were me, as far as Lyme is concerned, I'd assign selection of researchers solely to the patient task force.
 
From @MassMECFS e-newsletter:

CONGRATULATIONS to ME/CFS Advocates in Minnesota!
A group of dedicated advocates helped to craft legislation that establishes a comprehensive, statewide monitoring and support program for individuals suffering from Long COVID, ME/CFS, Dysautonomia, and POTS. The legislation is included in the state's 2023 Omnibus Health Care bill, signed by the Governor and implemented as SF2995, Section 50: Long COVID and Related Conditions Assessment Monitoring. (Pg 213)

The legislation is supported by funding for the Minnesota Department of Health in the order of $3.14M per year for each of the next 4 years.


Link:
https://www.revisor.mn.gov/bills/te...ssion=ls93&session_year=2023&session_number=0
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According to the U.S. Department of Health and Human Services (HHS), current analysis estimates that 7.7 million to 23 million Americans have developed Long COVID. Here are some recent developments in the study of and response to Long COVID that may be of interest to HIV.gov readers:

  • HHS Announces the Formation of the Office of Long COVID Research and Practice. This office will be located within HHS’s Office of the Assistant Secretary for Health under the leadership of the HHS Assistant Secretary for Health, Admiral Rachel Levine, MD. The new office is charged with ongoing coordination of the whole-of-government response to the longer-term effects of COVID-19, including Long COVID and associated conditions and the implementation of the National Research Action Plan on Long COVID (PDF, 1.26MB) and the Services and Supports for Longer-Term Impacts of COVID-19. Currently, 14 federal departments engage on Long COVID, including over a dozen HHS Operating and Staff Divisions, with a goal to reduce the impacts of Long COVID by improving quality of life for people living with Long COVID and reducing disparities related to Long COVID.
  • NIH Launches Long COVID Clinical Trials Through the RECOVER Initiative, Opening Enrollment. The National Institutes of Health (NIH) RECOVER InitiativeExit Disclaimeris a $1.15 billion nationwide research program designed to understand, treat, and prevent Long COVID. Launched in 2021, RECOVER established one of the largest, most diverse study groups of patients with Long COVID in the world. The initial stage of the initiative involved launching large observational multi-site studies examining and following people through their experience with COVID-19 to learn why some people develop long-term symptoms while others recover completely. These studies are ongoing and have recruited more than 24,000 participants to date. Researchers also are analyzing 60 million electronic health records and conducting more than 40 pathobiology studies on how COVID-19 affects different body tissues and organs. This study cohort participated in RECOVER observational studies that allowed researchers to characterize the condition in great detail, which is critical for informing the development of clinical trials to test interventions. The clinical trials are designed to study multiple treatments and therapies across five focus areas. Platform protocols for two of these areas were posted on July 31, with enrollment for these trials taking place throughout the summer. Read more about the newly-launched Long COVID trials and additional trials to be launched in the coming months.
  • White House Launches Office of Pandemic Preparedness and Response Policy (OPPR). On July 21, 2023, the White House announced the launch of OPPR. It will be a permanent office in the Executive Office of the President, charged with leading, coordinating, and implementing actions related to preparedness for, and response to, known and unknown biological threats or pathogens that could lead to a pandemic or to significant public health-related disruptions in the United States. OPPR will take over the duties of the current COVID-19 Response Team and Mpox Team at the White House and will continue to coordinate and develop policies and priorities related to pandemic preparedness and response. To lead this work, the President announced that Major General (ret) Paul Friedrichs will serve as the inaugural Director of OPPR and Principal Advisor on Pandemic Preparedness and Response.

https://www.hiv.gov/blog/recent-long-covid-pandemic-preparedness-news-updates/
 
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Monica Bertagnolli, M.D., takes the helm at NIH
Monica M. Bertagnolli, M.D., started today as the 17th director of the National Institutes of Health, the nation’s biomedical research agency and largest public funder of biomedical research in the world. She is the first surgeon and the second woman to hold the position. Nominated by President Biden, Dr. Bertagnolli was confirmed on a bipartisan basis by the U.S. Senate on November 7. She transitioned from her role as the 16th director of the National Cancer Institute, a position she has held since October 2022. NCI Principal Deputy Director Douglas R. Lowy, M.D., will serve as the NCI acting director until President Biden appoints a new director.
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Chief among her key priorities is ensuring clinical trials yield the best results by increasing the diversity of participants; embracing the rapid expansion of new learning-based analytical tools and ensuring their use improves care for all people; and restoring trust in science by making it accessible to all communities and inspiring the next generation of doctors and scientists. Dr. Bertagnolli also is committed to leveraging commonalities across all diseases — from biology to accessing care — to strengthen collaboration across the 27 NIH institutes and centers.

“My research focused on how inflammation causes cancer,” said Dr. Bertagnolli. “We know, however, that inflammation also is a major component behind Alzheimer’s disease, autoimmune disorders, Long COVID, arthritis and many other diseases. As NIH director, I’m excited to drive cross-cutting research to capitalize on such commonalities.”
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Dr. Bertagnolli has been a cancer surgeon for more than 35 years. Before joining NCI, she specialized in treating and researching gastrointestinal cancers in her roles as the Richard E. Wilson Professor of Surgery at Harvard Medical School, a surgeon at Brigham and Women’s Hospital and a member of the Gastrointestinal Cancer Treatment and Sarcoma Centers at Dana-Farber Cancer Institute, all in Boston.

Dr. Bertagnolli’s research has advanced the current understanding of the gene mutation that promotes gastrointestinal cancer development and the role of inflammation as a driver of cancer growth. She also has worked to increase responsible access and sharing of cancer clinical trial data among researchers and has promoted the inclusion of rural communities in clinical studies. She is a past president and chair of the board of directors of the American Society of Clinical Oncology and has served on the board of directors of the American Cancer Society and the Prevent Cancer Foundation. She was elected to the National Academy of Medicine in 2021.

Dr. Bertagnolli graduated from Princeton University with a bachelor’s degree in engineering and went on to receive a Doctor of Medicine degree from the University of Utah in Salt Lake City. She trained in surgery at Brigham and Women’s Hospital and was a research fellow in tumor immunology at the Dana-Farber Cancer Institute.
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https://www.nih.gov/news-events/news-releases/monica-bertagnolli-md-takes-helm-nih


National Institutes of Health Director Nominee Monica Bertagnolli Confirmation Hearing

https://www.c-span.org/video/?53119...minee-monica-bertagnolli-confirmation-hearing

47.57 - 51.34

Senator Kane describes the problems at the NIH regarding long COVID research, funding, lack of transparency and patient advocates not being listened to.

Senator Kane also mentions the disbelief that patients face, patients having fluctuating heart rates, and that his wife went with a friend who has long COVID to see a lawyer last week to help her file for bankruptcy.

Senator Kane said that about 5.3% of Americans now have long COVID and that it significantly limits life activities for 80% of those people.

Dr. Bertagnolli agrees to work with Senator Kane and patient advocates. She said, "I think this is one of the greatest tragedies we have recently seen". She also said that she loves the expression, "nothing about us without us" and that she lives by that in her research.
 
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FYI just sharing this note that Koroshetz sent me today: "And to mention I spoke with Dr. Bertagnolli about ME/CFS at our first face-to-face. I feel she will be supportive." (I know it’s lip service but sharing, at least)
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I'd be surprised if she didn't talk with Fauci. Let's hope he really means it and will advise to make something out of it. I doubt he said the thing about what he'd do if he started his career now just like that (in a recent interview, he said he'd be interested in working on ME). Especially in medicine, more often than not progress occurs through who is in charge, at the pace of funerals/retirement.

What ruined everything was always lack of will. It's all it takes. Well, that and a pandemic that massively increased the visibility of this issue. Both, it seems.
 
14th November 2023 is Long Covid Moonshot Day.

https://longcovidmoonshot.com/

US residents are encouraged to call their representatives in Congress.

WHAT WE WANT:
  • Invest in a moonshot for Long Covid – a commitment to invest at least $1B per year over the next 10 years into NIH research funding and clinical trials.
  • Back the Long COVID Support Act (S. 2560), TREAT Long COVID Act (HR 3258), and Long COVID RECOVERY NOW Act (HR 1114).
 
(2 minutes)
Medical Minute: Fibromyalgia Versus Chronic Fatigue

News On 6/KOTV
36.2K subscribers

236 views 26 Nov 2023
Fibromyalgia and chronic fatigue share some of the same symptoms, so it's hard to tell a difference. News On 6 anchor Leanne Taylor explains how you can tell them apart in this morning's Medical Minute.



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Superficial analysis.
Recommends patients adopt a healthy lifestyle and stay active (then shows somebody doing weights).
Says the main symptom of fibromyalgia that sets it apart from chronic fatigue syndrome is pain and the main symptom of chronic fatigue syndrome that sets apart from fibromyalgia is fatigue: people with this condition report fatigue that worsens with activity and doesn't improve after rest.
 
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