Washington Post article giving some data on Long Covid in USA and urging action, posted here: https://www.s4me.info/threads/long-covid-in-the-media-and-social-media-2023.31490/page-6#post-460043
Residents near Ohio chemical train derailment site urged to take tests amid 'gaslighting' fears Residents near Ohio chemical train derailment site urged to take tests amid 'gaslighting' fears (msn.com) (reminds me of Camelford; Simon Wessely)
Moved from the Long Covid in the media thread March 15, 2023 Markey, Kaine, Duckworth Reintroduce Bill to Help Millions of Americans Living With Long COVID Legislation would improve research and boost access to resources and education regarding the condition https://www.markey.senate.gov/news/...-millions-of-americans-living-with-long-covid I was happy to see that the CARE for Long COVID Act is endorsed by a long list of organizations.
Congress needs to do something significant about the mismanagement of the NIH. People need to be held accountable.
Merged thread They Had $350,000 and a Dream to Live Together. Could They Make It in Manhattan?, NYT Not sure where to put this—one of the people has MECFS. https://www.nytimes.com/interactive...AOt_WnmCR56S9Qx0pxfC6eBjfPw2-c&smid=url-share
Posts moved from Long Covid in the media. Long Covid Help Gets Funding Push From Biden HHS, Lawmakers https://news.bloomberglaw.com/healt...lp-gets-funding-push-from-biden-hhs-lawmakers Hundreds of millions of dollars would go toward efforts to diagnose and treat people suffering long-term Covid symptoms under funding plans put forth by the Biden administration and lawmakers. ... The Biden administration is taking a stab at filling the void. In his fiscal 2024 budget request, President Joe Biden pitched Congress on $130 million for the Health and Human Services Department for long Covid programs that would help rural communities, low-income Americans with HIV, and others. The funds would filter through the HHS’ Health Resources and Services Administration, which serves hundreds of millions of low-income people. The administration has requested another $130 million for the HHS’ Indian Health Service to treat and diagnose long Covid in 2025. ... “The appetite on the positive side is this affects constituents in every one of our districts,” Beyer said. “On the yang side, we’re looking at this debt ceiling.” ... Congress in late 2020 approved over $1 billion for the HHS’ National Institutes of Health to study Covid’s long-term effects. In his budget request, Biden is pushing for $19 million for the Agency for Healthcare Research and Quality to keep researching long Covid care delivery. That’s $9 million over last year’s FY 2023 enacted budget amount. Meanwhile, the HHS said this month that it would issue a funding opportunity to broaden access to long Covid care, with a special emphasis on serving minority, rural, and other underserved communities. ... Lawmakers are pushing for more resources. In March, a trio of Democratic senators reintroduced the Comprehensive Access to Resources and Education (CARE) for Long COVID Act (S. 801). The bill directs the HHS secretary to create and regularly put out long Covid information to the public using plain language. That would include information on long Covid’s long- and short-term health effects, available treatment options, and ways to limit the likelihood of developing long Covid. ... In its current form, the bill would authorize the spending of over $150 million. But she warned that not passing such legislation would result in severe economic costs down the road. Of the millions of working-age adults with long Covid, fewer than half who were working pre-infection returned to work full time after, according to the Kaiser Family Foundation.
So $130 million to fund an agency that serves 'hundreds of millions of people'. From which I would conclude that each of these people is worth no more than 30 cents to those who've decided that this level of funding is not just appropriate but worth crowing about. .....and as far as it looks LC will only get a small chunk.
Projection August 2022 using a March 2021 study with cohort of 1047 post covid 50% over 50, pre illness health status not recorded.
Call for Public Comment from the National Academies of Sciences, Engineering, and Medicine https://survey.alchemer.com/s3/7301239/Long-COVID-Definition-Online-Public-Comment-Portal A National Academies of Sciences, Engineering, and Medicine committee is conducting a series of stakeholder engagement activities to examine the current U.S. Government (USG) working definition for Long COVID and related technical terms. The stakeholder engagement process is being conducted for the purpose of gathering a diverse and informed range of perspectives, experience, and expertise from key stakeholders to help inform refinements to the U.S. Government’s current working definition of Long COVID and related technical terms. Interim Working Definition: Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes. This Online Public Comment Portal will be available from April 10, 2023 – June 12, 2023, for public comments and resource submissions to the Committee on Examining the Working Definition for Long COVID about the current interim definition. There is a line that says "All written materials provided for consideration by the committee may be listed in the committee's Public Access File (PAF)". Whereas the committee page says "Contact the Public Access Records Office to make an inquiry, request a list of the public access file materials, or obtain a copy of the materials found in the file." I'll see if I can do that later, but it's a little complicated for me right now. If anyone can request those documents it would be great, and maybe this is worth doing a thread to help get more contributions.
More on the consultation process for the "Examining the Working Definition for Long COVID" here: USA: 'Examining the Working Definition for Long COVID' consultation 2023
Moved post NY Times article with behind the scenes look at the National Academy of Sciences and Engineering, etc. and the Sackler (Purdue Pharmacy opioid debacle) influence. https://www.nytimes.com/2023/04/23/...CkRCAyB29dqA&giftCopy=0_NoCopy&smid=url-share
HHS Issues Advisory on Mental Health Symptoms and Conditions Related to Long COVID https://www.hhs.gov/about/news/2023...mptoms-and-conditions-related-long-covid.html Identification and Management of Mental Health Symptoms and Conditions Associated with Long COVID https://store.samhsa.gov/sites/default/files/pep23-06-05-007.pdf
Quote from this document: There are other sections on various individual and group therapies that can be provided for psychological and cognitive problems that occur as part of being ill with long covid. I can't see any mention anywhere of ME/CFS or PEM, and no mention of needing to rest or pace activity if they have PEM. The main emphasis in this document seems to be insistence that any anxieties or sadness people experience as part of being ill need to be treated by psychiatrists and psychotherapy.
A couple more points that occur to me after reading the above documents. First, they seem to be overdiagnosing natural sadness and worry over being ill, including anxieties over finances etc as psychiatric disorders such as PTSD, anxiety and depression that need to be medicated or treated with therapy. It's far more likely supportive listening, help with physical symptoms where possible, and practical and financial support are what is needed, not psychiatric diagnosis and treatment. And second, they keep slipping between calling them psychiatric disorders and behavioural disorders, which seems to me to be suggesting the patient is behaving wrongly and needs to be corrected with CBT, ie a judgemental attitude.
You can't have a necessary condition out of a "may". It may improve, even though there is zero evidence of that, and that means necessary. This recklessness defines psychosomatics. They present BS evidence that at best "may" have some effect that no one can measure. Then insist it's 100% effective and necessary. Somehow. Even though in the absolute best anyone can come up with is that 1/7 may receive some form of subjective benefit. In the absolute best case "evidence", as long as it's heavily biased. From that it is argued that it works 100% of the time, so much that if it fails, you didn't try hard enough. It's easy to see how decades can go by with nothing to show for it. Reality means nothing to hopium-based medicine.
The American Association of Immunologists AAI President’s Message Akiko Iwasaki, Ph.D. Sterling Professor of Immunobiology; Professor of Dermatology and of Molecular, Cellular, and Developmental Biology and of Epidemiology (Microbial Diseases); Director, Center for Infection and Immunity—Yale School of Medicine Investigator, Howard Hughes Medical Institute AAI President, 2023–2024 https://www.aai.org/Presidents-Message
It's great that post-infectious illness is going mainstream to the extent a more general scientific body appointed a specialist in them as president, and published a call for more research into them.
Merged thread Minnesota's leading epidemiologist gets Long Covid Osterholm learns firsthand what long COVID does Epidemiologist is wary about future variants. By RACHEL HUTTON rachel.hutton@startribune.com Michael Osterholm, Minnesota's longtime infectious disease specialist and Biden White House adviser, has been a voice of caution through the pandemic — and one of the most careful among us in protecting himself from COVID. This past March, as many people had dispensed with nasal swabs and masks, Osterholm celebrated his 70th birthday by hosting a few (tested) guests for dinner and attending a small, uncrowded music show (wearing an N-95 mask). And yet, he got his first SARS CoV-2 infection. We checked in with Osterholm about his experience with long COVID, his perspective on where we are in our pandemic journey, and why he still sleeps with one eye open. This interview has been edited for length and clarity. Q: After three years of educating people about COVID, you finally got it. A: I was one of three people who got infected the same night. We don't know exactly where we got it. I think the only time all three of us didn't have a fitted N-95 mask on was just a short elevator ride in my building. [...] Q: Can you give us a preview of your forthcoming book? A: It's about the lessons we should have learned from this pandemic. Over the next several months, we're about to see the public health system in this country systematically dismantled. I've never seen anything like this in my 48 years in the business — the amount of clawback that has happened with resources and funds. We're going to see major layoffs in public health agencies all across the country at federal, state and local levels. We're going to see research scaled back substantially on infectious diseases. Q: What do those kind of cuts mean? A: If you add it all up, and then you realize the lack of trust that exists now in public health, I think we're less prepared for the future than we were in 2019 and 2020. And it doesn't have to be that way. We have to continue to sustain efforts to get better vaccines. Seasonal flu still kills a lot of people. What if we had the holy grail vaccine that actually had broad protection, durability, and could be administered around the world without a minus-30-degree cold chain? Wouldn't that be something? Now more than ever we should be really hunkering down and looking at that as a strategic goal. [...]
