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#MEAction: 'Guiding Minnesotans Living with Long COVID & ME/CFS to Secure In-Home Help'

www.meartistsproject.com

Guiding Minnesotans Living with Long COVID & ME/CFS to Secure In-Home Help

Pilot program offers free support for Minnesotans with energy-limiting illness
www.meartistsproject.com www.meartistsproject.com

'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created by #MEAction and funded by a grant from the Minnesota Department of Health’s Long COVID Program.

'Our navigator provides one-on-one support applying for in-home help through Minnesota's Medical Assistance (Medicaid) program. It's free for Minnesotans living with Long COVID, ME/CFS, and related energy-limiting illness.'
 
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Genetic Literacy Project by Henry Miller: "The lingering pandemic: The chronic toll of untreatable long COVID"

Henry I. Miller, a physician and molecular biologist, is the Glenn Swogger Distinguished Fellow at the Science Literacy Project. A veteran of the NIH and FDA, he was the founding director of the FDA’s Office of Biotechnology.

'Long COVID may well lead to a broader health crisis, but it is also a scientific opportunity. It forces medicine to confront complex chronic conditions that defy easy categorization. It also renews attention to post-viral illnesses such as ME/CFS, and invites deeper investigation into how immune responses interact with various organs.'

'Strikingly, many of these symptoms resemble those found in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a poorly understood disorder often triggered by infections and long dismissed by parts of the medical community. The overlap between long COVID and ME/CFS is currently the subject of serious research and may provide a long-overdue window into post-viral illnesses more broadly'

'Despite the enormous global burden of long COVID, effective treatments remain elusive. Clinical trials are underway, but the diversity of symptoms and absence of clear biomarkers make it difficult to predict which therapies will help which patients.'

'Personalized treatment, tailored to individual symptoms and immune markers will be necessary.'
 
'It also renews attention to post-viral illnesses such as ME/CFS,...'​

I really wish the viral part of that description was dropped from the lexicon. We don't know it is viral. Much safer to say post-infection.

'Personalized treatment, tailored to individual symptoms and immune markers will be necessary.'​

I remain very far from convinced about the assertion that management or treatment for ME/CFS needs to be personalised to any great degree, any more than setting a broken forearm needs to be. Of course every single case of a broken forearm is strictly speaking not exactly the same. But the basic treatment protocol is, and the differences are minor tweaks.

I think saying it requires 'personalised' approach is just dead-end, an excuse to admit they have no idea what they are dealing with, and no idea how to deal with it.

If the personalised approach is so effective then where is the evidence for it in robust studies?
 
Here's some good news:

Trump Admin Throws Up Hands, Pledges to Restore HHS Websites
Medpage Today said:
The Trump administration has thrown in the towel in the fight over federal public health webpages that were removed earlier this year.

It settled a lawsuit brought by AcademyHealth and eight other public health and medical organizations, promising to restore scores of pages from the CDC, NIH, and FDA that were removed to the way they appeared on Jan. 29, 2025.

"They said, 'We're not even going to fight this. We're just going to put everything back,'" Aaron Carroll, MD, MS, president and CEO of AcademyHealth, told MedPage Today.

Restored pages include the Youth Risk Behavior Surveillance System (YRBSS), the Pregnancy Risk Assessment Monitoring System (PRAMS), datasets on HIV care, and information on opioid use disorder in women.
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I was listening to the Surgeon General of Florida this morning on CNN, and his explanation for his vaccine mandate tells me that he has lived his life in a bubble. Just clueless. Allowing parents to make their own decisions on whether their child should get vaccinated assuming they understand how vaccines work is just irresponsible. It's not about a parent being concerned about 'what their child puts in their body", it's about years of research and studies that prove vaccines work. Is the Surgeon General aware that some parents rely on social media for their medical decisions/advice?
 
Sean said:
To the surprise of nobody with more than a dozen neurons.

We are watching the complete destruction of medical science, and no doubt other sciences too, in the USA, and quickly.
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One of the rare bits of policy continuity, sadly. This is something over which the medical profession and RFK and his quacks very much agree on.
 
Orange County Business Journal: 'COVID Expert to Chair TechImmune'

'Gavin Herbert is winning converts to his latest venture, which is trying to solve Long Covid''

'The company, which began in 2021, is expecting to raise up to $50 million in the coming two rounds to fund clinical trials that could begin next year, Young said.'

'TechImmune is developing a T-cell–based immunotherapy to address the root cause of Long Covid by clearing persistent SARS-CoV-2 reservoirs in the body and restoring functional anti-viral immunity. Its lab tests on mice have shown positive results. If clinical tests are successful, it will be the first approved disease-modifying treatment for Long Covid.'

“We expect to have that data wrapped up by the end of the year” Ulmer said about the animal model study.

'..Ulmer said that “with success,” the company will enter development in early 2026 toward an investigational new drug (IND) clinical trial.'
 
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