News from the USA, United States of America

KSL NewsRadio: “The long arm of long COVID”

“6.8% of adults in the United States have long COVID,” said Dr. Melanie Hoppers, a practicing physician, board certified in internal medicine and pediatrics with the Bateman Horne Center

“5.8 million children in America have long COVID, which extrapolates down to about 2,000 in Salt Lake City,” Hoppers explained.”

Fifty percent of people with long COVID meet the definition for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). That disease has been around for a long time. It’s a post-viral illness.” They know a lot about ME/CFS at the Bateman Horne Center.

“Patients sometimes experience post-exertional malaise,” Hoppers said, “so when they try to exert themselves, their body does not create energy.

 

[mods feel free to move to where most applicable]

"Lauren Stiles of Dysautonomia International on Her Story and What's Exciting Her Now'

"...NIH actually wrote back to us and said we're worried about calling it POTS because people might think it references marijuana.."

"They ignored most of our recommendations and really intentionally kept the patients in the dark. They would finalize the trial protocol, without even showing it to us, and then send it to us afterwards and tell everyone they got patient input on it."

"It was very clear that the patient engagement was for public relations purposes and it was not meant to be really meaningful. Now there are some researchers within RECOVER who were genuine in trying to get patient input included, but I would say at the highest levels of leadership that was not really a priority."

"From the very beginning, we and other groups advocated for people who had decades of experience in studying post-viral syndromes like POTS, like ME/CFS to be at the leadership level in RECOVER - not just to be on some side committee that had no real authority, but to actually be helping make the decisions on the study design and that was largely ignored. So when you give nearly two billion dollars to people who have no experience in post-viral syndromes don't be surprised if what you get is something that's disconnected from what the patients actually need."

Cort: "Adjusting, do you see any signs of that?"

Lauren: "Absolutely not. I see a defensive posture, I see defensiveness. I've been in meetings with Senator Sanders & the NIH Directors - all the Institute Directors involved in RECOVER, and it's just been excuses and defensiveness...not actually listening...even the researchers involved in RECOVER have raised concerns internally...it's also pretty awkward when you are on the study committees, to have to be the one criticizing it.."

"I don't see RECOVER changing the dynamic in any way. If anything, they're closing rank and putting out the defensive ranks..."

"I'll tell you what. They are more than 3 years into the study & autonomic testing has been recommending since the very first week of RECOVER..there was a committee..I was the only patient rep on the committee..we got the committee to vote in favor...they still haven't done any.."

"So now we're going to get data that doesn't mention anything about Autonomic Dysfunction."

"...why is NIH not empowering people who have any clue about post-viral syndromes to be part of the research teams, you know? so we were basically playing defensive editing..."

"we've asked the RECOVER autopsy study to capture the autonomic ganglia - that was my major contribution to RECOVER, that was demanding that they take autonomic ganglia and sensory ganglia samples from the autopsy study - and I did get that approved."

 

The organisation that this lady represents has a bad track record in terms of ME/CFS more broadly and in particular in terms of PEM. They ignored the issue entirely for many years. A broader coalition with such groups can make sense, but we better be careful. Her inputs in terms of autonomic ganglia are very appreciated, that might turn out to be useful.

 

Wait--Patrick mentioned me? This was recently?

 

@dave30th mentioned in this talk from 6/19 (30-min podcast with Rachel) https://archive.ph/L5C4z

 

Thanks for letting me know!

 

Presentation now online from this week's: "Could a Common Condition Called POTS Explain My Chronic Fatigue Syndrome? (Tae Hwan Chung, MD, Director/Founder, Johns Hopkins POTS Clinic Program)

(~57 minutes)

https://www.youtube.com/watch?v=4Y0nF_8kboo

 

Akron Children's: '...Dr. Cohen is advancing treatment in mitochondrial medicine to treat patients..'

'When we look at causes of diseases..possibly even long COVID, it comes down to the mitochondria just don’t seem to be working properly..'

'Akron Children’s Dr. Bruce Cohen is considered one of the world’s leading experts in mitochondrial diseases thanks to his dedication to uncover treatments for patients.'

Tulane University: "Alumni spotlight: Research, service define graduate’s Tulane experience"

'Murugesan has worked in Hoerger’s lab since July 2021..assisting Hoerger on his research around long COVID..that research evolved into an independent study on long COVID and the symptom of brain fog (and other cognitive effects),” said Murugesan"

 

Nature: Exploring the role of the gut microbiome in long COVID in young people

'Pediatric gastroenterologist Suchitra Hourigan at the National Institute of Health in Maryland, US, and trainee Mickayla Bacorn will use their Global Grant for Gut Health to examine gut microbiome changes in children and young adults with long COVID as well as attempt to pinpoint novel therapeutic targets for the condition.'

'We hypothesize that adverse long-term COVID-19 outcomes in children may be partially mediated by the gut microbiome and the extent to which it is disrupted by the infection and after the infection.'

'We will use shotgun metagenomic sequencing to investigate the microbiome in each stool sample. This is a deep sequencing technique that will enable us to comprehensively examine all the genes in all microorganisms in each sample'

'We will examine more than 7,000 circulating proteins in the blood samples using state-of-the-art assay technology.'

'Additionally, the knowledge gained in our project may have broader applications, providing insights into other pediatric viral infections that have similar long-term effects.'

"Suchitra (Suchi) Hourigan received her medical degree from the University of Oxford in the UK. Suchitra joined the National Institute of Allergy and Infectious Diseases in 2021."