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. 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: 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!
The above post has been copied and further posts about the clinical trials being run under the RECOVER program have been moved to USA: The RECOVER Initiative - Long Covid research
Merged thread A Paradigm Shift in Research for Infection-Associated Illnesses, 2023, Ryan Prior https://tcf.org/content/commentary/a-paradigm-shift-in-research-for-infection-associated-illnesses/
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
merged 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/
HealthWatch: Fibromyalgia or Chronic Fatigue? 9/22/2023 https://news.yahoo.com/healthwatch-fibromyalgia-chronic-fatigue-9-222152330.html?guccounter=1
short news item on News4JAX Are you suffering from fibromyalgia or chronic fatigue? not helpful at all.
Merged thread Ady Barkan has died of complications of ALS . A tireless advocate and campaigner who has helped to change the narrative around care in US . RIP https://twitter.com/user/status/1719895098954322210
Monica Bertagnolli, M.D., takes the helm at NIH 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.
https://twitter.com/user/status/1723080843977994487 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).
Merged thread Long time advocate for people with MECFS Democratic Rep. Anna Eshoo to retire at end of term https://thehill.com/homenews/house/4320994-democratic-rep-anna-eshoo-to-retire-at-end-of-term/ https://www.mercurynews.com/2023/11/21/longtime-congresswoman-anna-eshoo-will-not-seek-re-election/
At 81 I'm not surprised that she is retiring! She has been an MECFS supporter and I'm guessing it's been helpful to have her on the Congressional Health subcommittee. I wonder where her replacement will stand on Long Covid and ME...............
(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. https://www.youtube.com/watch?v=N8fqYJK4CoE ------ 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.
