S.Jones

From Dr. Ruth Ann's newsletter.
Don't for a second think we are done with Covid regardless of what the morons in DC say. RFK will have blood on his hands.

"there are about 505,000 new COVID infections daily across America 1 in every 95 people is currently infected, 1 in 38 in Texas,"

Vax! Mask!

From Cornell University

I’m a retired librarian and am still masking. I can read the research.
Librarians rule!

Trump Wants U.C.L.A. to Pay $1 Billion to Restore Its Research Funding

More extortion and blackmail from the our Fascist Corrupt Fearless Leader over endlessly fabricated charges of antisemitism. So despicable that this is being used as an excuse for his criminal behavior. The painfully sad irony is that it will cause more antisemitism.

www.nytimes.com/2025/08/08/u...

Shows a sick man in a bed marking tallies on the wall representing the time he has been sick. He has devices for tube feeding attached to his abdomen. Written on the bed is “Severe ME Day August 8th.” A crow at the foot of the bed says, “Free Whitney Dafoe,” who is a person with severe ME who has been sick and alone in a darkened room for years.

The CDC estimates that 820,000 to 830,000 people have severe ME in the U.S. ME is a kind of torture that takes everything pleasurable from the individual and replaces it with a darkened room where an inert body cries out in agony. There is no cure, and many people have suffered for decades.

Yes! Well said.

For those who don't know, Dr. Nancy Klimas has been at the forefront of #MyalgicEncephalomyelitis for decades. She fights the good fight.

It's hard to describe what it does to your spirit when M.D.s repeatedly *get mad at you* b/c they don't understand what you have.

#SevereMEDay

Shows a sick man (Whitney Dafoe) lying on a bed with a feeding tube attached to his chest. With one hand, he is marking tallies on the wall to indicate the passage of time. There are many tally marks on the wall to indicate that he has been sick for a long time. There is a crow at the foot of the bed saying, “Free Whitney Dafoe."

The CDC estimates that 820,000 to 830,000 people have severe ME in the U.S. ME is a kind of torture that takes everything pleasurable from the individual and replaces it with a darkened room where an inert body cries out in agony. There is no cure, and many people have suffered for decades.

This day is always extremely difficult every year. It’s Severe ME day. This disease has been the most difficult thing I’ve ever had to face in my life, and I’ve faced a lot.

We remain one of the least funded diseases by disease burden, if not the least.

Having a severe form of ME is horrifying.

white text on black background that says: "people living with severe ME/CFS deserve to have hope. But hope will come from effective therapies backed by robust clinical research, not opinions."

Yes yes yes - thank you @putrinolab.bsky.social @binitakane.bsky.social @sunny-rae1.bsky.social and all those who wrote, organised and signed this robust evidenced based response to the gaslighting outdated opinion piece in the @bmj.com

www.bmj.com/content/389/...

Excellent analysis. Thank you.

Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...

CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that @huisarts-vink.bsky.social & A. N. Vink

YouTube video by Long Covid Kids Long Covid & Me | Understanding Long Covid In Children And Young People

youtu.be/e0U7K54RiSg

Too Many Of Us Are Dying I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suf...

I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING.…And I don’t see anyone even blinking an eye…

Read the piece on my blog:
www.whitneydafoe.com/mecfs/?post=...

#mecfs

Buried Alive by Government “Experts” — Bridget O'Shea At first, I’d been on a plane, in a window seat, grounded and waiting to deboard. I thought this for a long time. Now, though, the scene takes me to the backseat of a car – my parent’s car – on the hi...

Here’s Bridget in her own words on the #GreatestMEdicalScandal. How many more kind and brilliant souls do we have to lose before this gets the compassion, help, NEWS COVERAGE, and treatment patients deserve?
#JohnVsJonVsME
2/

bridgetoshea.com/blog/buried-...

Eliminating the Department of Education is a cynical attack on parents and children. When I was a high school librarian, we received federal funds to buy books for kids, and our special education program also relied on federal money. The conservative members of the Supreme Court should be ashamed.

House Republicans passed the single largest transfer of wealth from the poor to the rich in the HISTORY of our country.
 
The GOP tax bill would deliver the largest cut to Medicaid and SNAP EVER.
 
Repost and help me put a burning, bright spotlight on this awful disaster of a bill.

Dear Healthy People I feel like I am in a position where I have to be against the whole world because the whole world is against me…But I don't enjoy that, I didn't choose that. I was put in this position. I love this wo...

1/
"The healthy people who run this world have created animosity out of nothing - such great and needless harm and suffering.

Where is the humanity in all of this?

@whitneydafoe.bsky.social

www.whitneydafoe.com/mecfs/?post=...

Agreed!

Shows a man sitting in a chair with his daughter on his lap. The girl is asking her father if she is going to get long Covid. The father says yes, everyone will. The dog sitting at the man’s feet is asking who will walk the dog.

Here Are the Nearly 2,500 Medical Research Grants Canceled or Delayed by Trump (Gift Article) Some cuts have been starkly visible, but the country’s medical grant-making machinery has also radically transformed outside the public eye.

From the day Mr. Trump was inaugurated through April, the agency awarded $1.6 billion less compared with the same period last year, a reduction of one-fifth"

Hover over the 'dots' to see what is being destroyed.

www.nytimes.com/interactive/...

Shows a teacher in a classroom pointing to a chalkboard on which she has written “We’re going to save the chidren,(deliberately misspelled) aren’t we?” The teacher has a pink blob for a brain, labeled Covid Brain. Several children are not paying attention to the teacher and they have pink blob Covid Brains, too.

What kind of society are we if we don’t save our children?

Great cat photo!!

Pete the cat lying flat on the floor with just his head showing.

Flat Pete

YouTube video by Unraveled: Understanding Complex Illness Oh, My Poor Gut

New episode of Unraveled just published.

youtu.be/Uz_F6UQ628Y

But hidden beneath the scientific rhetoric is a plan that would destroy scientific independence in the US by giving political appointees the latitude to dismiss entire bodies of research and punish researchers who fail to fall in line with the current administration’s objectives

Excellent rapid response. Thank you.

Ignorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress

The BMJ have published Dom Salisbury’s rapid response to Miller et al’s Opinion piece. He mentions PEM as the definitive symptom. #ME

@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...

The BMJ has now published my rapid response to Miller et al's Opinion piece.

www.bmj.com/content/389/...

A social media post from The BMJ (@bmj_latest) states that Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250,000 people in the UK and suggests that reframing beliefs and specialist rehabilitation can aid recovery for those with severe ME/CFS, tagging @PaulGarnerWoof and colleagues. Below this is a link preview with an illustration of a person slumped on the floor, leaning against a bed, looking unwell, next to text that reads "Patients with severe ME/CFS need hope and expert... bmj.com". Below the link preview, a "Readers added context" section includes a note stating that while the article is about ME/CFS, it doesn't cite current research, using articles on fatigue and functional syndromes instead, and emphasizes that Post-exertional malaise (PEM) is not just fatigue and ME/CFS is not a functional syndrome.

This heavily ratioed (commissioned🤦‍♀️) opinion piece by the @bmj.com shows a core issue in medicine

That is the connections/network you have to spread harmful, anti-consensus narrative that matters - not science, or the patient experience

This should never have been published