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From Twitter


@VirusesImmunity​
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Exciting opportunity at Yale We are seeking a Medical Director for the Yale New Haven Hospital Multi-Specialty Long COVID Care Center. Pls spread the word!

Interested candidates should contact @LisaSandersMD.
#LongCOVID #Medicine#InternalMedicine#PostAcuteInfectionSyndrome​
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The role combines clinical care, program leadership, teaching, and cross-specialty collaboration, including with the @YaleCII.
More than 1,500 patients rely on this clinic, offering an opportunity to make an immediate impact on a community in need. (2/)​
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This physician leader will direct a highly effective multidisciplinary clinic that cares for patients with Long COVID while helping shape the future of post-acute infection syndrome care. (3/)​
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We are so grateful to the legendary @LisaSandersmd, the inaugural director of the @YNHH Long COVID Care Center, for making it such a success. We wish her the very best in her retirement later this year. Also grateful to @YNHH and @YaleMed for continuing to support the Center​
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USA Today article - "He lost 10 years in a Georgia nursing home. It's becoming more common"

www.usatoday.com

He lost 10 years in a Georgia nursing home. It's becoming more common

Millions of disabled and elderly Americans are forced to live in institutions not home. It could happen more as Trump lawyers concede to state lawsuit
www.usatoday.com www.usatoday.com
On Aug. 31, the Trump administration moved to make it easier for states to place disabled and elderly people in institutions. To appease a lawsuit from several Republican-led states, government lawyers told a federal judge they were willing to erase a 50-year-old provision requiring federal funds be used to care for people in their homes, whenever possible.

In effect, it undermines a landmark Supreme Court case from Papadopoulos’ home state that said denying people the ability to live in their communities is discrimination.

Advocates say the government’s concession erodes hard-fought civil rights under the Americans with Disabilities Act. And it threatens the return of a system where disabled people are locked in institutions instead of being allowed to live in their homes.

“It’s simply wrong and inconsistent with 50 years of law,” read a joint statement from seven national organizations, including the American Civil Liberties Union and Disability Rights Education & Defense Fund. “The disability community opposes any effort to turn back the clock on disability rights and community integration.”
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Every day brings more horrors. :cry:
 
There is a reckoning under way. In Canada, a lone MP is doing a sort of private "inquiry" (dubbed the Allison inquiry) that focuses on COVID vaccine adverse reactions. It's mostly a sideshow but it's drawing a lot of attention. It's not an official inquiry. The Canadian government and legislature have completely ignored LC.

It's impossible to miss how on social media, all mentions of Long Covid are still overwhelmingly met with comments about the COVID vaccine, and it's been going on for years. It's always the majority of comments, even more than casual deniers. Medicine and governments denying and refusing to do anything about LC has fuelled the conspiracy fantasy monster, and at this point it's too late. Even if something happened that led the medical profession and the health care industry get their shit together, they've already seen years of people frothing about it. And of course they won't be doing that any time soon.

In hindsight it will be far worse than the MMR paper. There will be a lot of political influence, it's an entirely political issue, it has been completely politicized, including by medical politics. Damn what a complete disaster.
 
Public Hearing of NIAID Proposed Reorganization

The Division of Clinical Research (DCR), established in 2006, supports and coordinates NIAID clinical research involving human volunteers. Its activities have included clinical research operations and oversight, biostatistics, regulatory and policy support, international clinical research partnerships, and specialized research capabilities, including work associated with the Integrated Research Facility at Fort Detrick (IRF-Frederick).
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NIAID proposes to disestablish DCR and realign its projects, programs, partnerships, and functions across the NIAID Office of the Director (OD), Division of Intramural Research (DIR), and Division of Microbiology and Infectious Diseases (DMID). The proposed changes are intended to better align with Presidential priorities and to reflect the Institute's updated vision and revised mission focus and to ensure accountability, transparency and standardized scientific review of research projects.
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This reorganization proposal is being presented to the public as required by NIH and HHS policies on organizational changes. During the public comment period of September 9 to September 18, 2026, this website will have a comment functionality. Individuals who wish to comment on the proposed organizational changes may leave a comment. These comments will be collated and reviewed by Institute staff.
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A request from an advocacy group - they want carers and patients to speak with senate offices:
Chandelier quoting a social media post said:
Hi everyone, I’m a volunteer with #NotJustFatigue (notjustfatigue.org) and a moderate-severe ME patient. We are looking for US-based caregivers of people with ME to speak with Senate offices about their observations of their loved ones. Your participation will help us advocate for $50 million in research funding to be allocated for the NIH ME/CFS Research Roadmap.We’ve had a wonderful response from patients so far, but we urgently need caregivers to join us and back up our testimonies. Having trusted caregivers tell Senate offices directly about how disabling and debilitating ME is makes a massive impact on lawmakers. Lawmakers need to hear how this illness impacts families and the daily reality observed by those closest to us. If you or a caregiver you know are interested in participating, please comment below or message me directly by going to my profile and selecting "New Chat."In addition to caregivers from anywhere in the US, we are also still looking for patients from West Virginia, North Dakota, and Mississippi.Thank you so much for your support!
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www.mecfssandiego.com

ME/CFS San Diego - Medicaid Work Reqts

Medicaid Work Requirements updated 9/16/2026
www.mecfssandiego.com www.mecfssandiego.com


2026 Update Medicaid Work Requirements​

(as of 9/16/2026)​




It's a pretty busy site.
I used AI to create a short summary:
Beginning January 1, 2027, Medicaid work requirements will generally affect nonpregnant adults ages 19–64 enrolled through ACA expansion programs, but not those covered through disability-based Medicaid, SSI, pregnancy, or similar categories. People with ME/CFS who are subject to the requirement may qualify for a medical-frailty exemption, determined through a three-tier system ranging from diagnosis-based exemptions to individualized reviews. The page warns that ME/CFS patients may face barriers because they often lack the hospital visits or conventional medical records these systems rely on, and advises checking your Medicaid eligibility category with your state agency.
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I haven’t listened to it so far.

Programme: Ask Me Anything Monday Healthy Steps Radio Show
Station: WMNF (Florida)
Date: September 14, 2026
Time: 3:53-12:15
WebRadio:
https://www.wmnf.org/chronic-fatigue-syndrome-ama-healthy-steps/

Item: Chronic fatigue syndrome vs. everyday fatigue: symptoms, prevalence, and who's most affected. Dr Harvey discusses latest research on fatigue and chronic fatigue syndrome.
 
airclub.org

Air Club

A global coalition aspiring towards healthy indoor air.
airclub.org airclub.org


HIGH-LEVEL SIDE EVENT · 81ST UNITED NATIONS GENERAL ASSEMBLY​
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HEALTHY INDOOR AIR IN SCHOOLS:​

Thursday, 24 September 2026 · 8:00–9:30am​
United Nations Headquarters, New York City​
10:00 AM–12:00 PM · Brunch & Networking Reception · Ophelia Lounge at the Beekman Tower, New York, NY​
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OBJECTIVES​

  1. Elevate healthy indoor air in schools as a shared public health, education, and infrastructure priority.

  2. Showcase Montenegro's national schools initiative as a model of government leadership and spotlight best practices from other Member States, cities, and school systems to catalyze wider action.

  3. Highlight globally deployable open-source solutions for air cleaning and monitoring.

  4. Convene decision-makers across public health, education, climate resilience, biosecurity, and philanthropy to unlock partnerships, funding, and follow-on policy commitments. Healthy indoor air is crucial for ensuring pandemic resilience and protecting against biological threats.

  5. Grow the Global Pledge for Healthy Indoor Air, including a ceremonial signing during the event.
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From Bluesky:



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The U.S. COVID-19 Hospital Surveillance Network (COVID-NET) reports that COVID-19 hospitalizations have exceeded the peak levels of the previous two waves, reaching their highest level since the week of December 29, 2024, through January 4, 2025.​

Coronavirus Disease 2019 (COVID-19) Hospitalization Surveillance Network (COVID-NET)

COVID-NET monitors COVID-19-associated hospitalizations among children and adults in the U.S.
www.cdc.gov www.cdc.gov
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The hard earned lessons are just not sinking in, are they.

Everybody wants to get back to the normal of the before times. Nobody wants to admit that we cannot go back, unless we develop a vaccine that effectively blocks transmission, and thus kills it off completely.

But, even if we do get such a vaccine, good luck convincing enough people to get it for that to be the result, given the massive own goal we have inflicted upon ourselves with the rabid anti-vax culture war sentiments.
 
Jaybee00 said:
“Columbia College receives "transformational gift" to expand nursing program''It would also support students who are impacted by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).”
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Link to news story about this topic for those who don't want to click on X/twitter links:

krcgtv.com

Columbia College receives "transformational gift" to expand nursing program

Columbia College announced they have received a “transformational gift” from an alumna on Thursday, which will help expand the nursing program.
krcgtv.com krcgtv.com
Columbia College announced they have received a “transformational gift” from an alumna on Thursday, which will help expand the nursing program.

The college announced the gift was from Barbara J. Bilger, who graduated in 1962. According to the college, the gift would support the nursing program and the next generation of healthcare professionals.
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“Columbia College has a long history of growth, innovation and changing lives, and I am honored to be part of that legacy,” Bilger said.

“It is particularly meaningful to me that this gift will support future nursing students while also helping raise awareness and understanding of ME/CFS, a condition that has deeply influenced my own journey."

Bilger has lived with ME/CFS for more than four decades.
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Jaybee00 said:
White House Moves to Take Control of N.I.H. Grants
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Ars Technica: Russel Vought will reportedly be given veto power over all NIH grants

On Friday, The Washington Post reported on a contentious White House meeting in which the director of the National Institutes of Health (NIH), Jay Bhattacharya, tried to fend off yet another effort to place funding decisions under political control. The move came from Russell Vought, head of the Office of Management and Budget (OMB), which has sought to limit and control research funds.
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This initial leak has been confirmed and expanded on by outlets such as The New York Times and Politico. It now appears that the administration is drafting an executive order that would give Vought veto power over every individual grant awarded by the NIH.
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But Vought seems to feel that it has funded a lot of “woke” research. Immediately after Trump re-entered the Oval Office, the agency terminated a broad range of grants on topics like pandemic preparedness and health disparities and proposed a budget that would shrink the NIH by nearly half.
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Apparently dissatisfied with simply blocking funding for entire fields of research and frustrated by Congress, Vought decided to have another go at the NIH’s grants. According to the Politico report, he leveraged one of Trump’s weaknesses: a desire to harm Harvard University. Early in his second term, Trump suspended all grant funding to a number of universities, seeking large payments from them in exchange for restoring the funding and dropping investigations. Harvard declined to go along and eventually won a lawsuit that restored the funding. But when news reports suggested that Harvard had agreed to a settlement without a payoff, Trump immediately demanded $1 billion from Harvard as part of any settlement.
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Sean said:
Russel Vought will reportedly be given veto power over all NIH grants

Anybody who knows anything about this guy will know what a catastrophe this is going to be. :eek:

This could set us back a decade or more, given the USA's importance in medical science.
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This is horrendous for medical science generally but it's not exactly like the US was a world leader in MECFS research.

I doubt it's going to set us back very far considering most of the important ME/CFS projects are currently happening in Europe and Australia.

Although there are some good researchers this is going to affect and that's awful.
 
That is largely true at this stage. But also true is that the USA had by far the greatest potential capacity to bring to it all, if they choose to.

Somehow I doubt we are going to figure high in the priorities of Trump & Vought, if at all.
 
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