He lasted three months.
Science Based Medicine: COVID-19 contrarian Dr. Vinay Prasad meets real world responsibility
BioSpace.com: Prasad Out at CBER Following Sarepta Rollercoaster and Conservative Criticism
News from the USA, United States of America
- Thread starter Andy
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He lasted three months.
Science Based Medicine: COVID-19 contrarian Dr. Vinay Prasad meets real world responsibility
BioSpace.com: Prasad Out at CBER Following Sarepta Rollercoaster and Conservative Criticism
Dakota15
Senior Member (Voting Rights)
Cell Reports Medicine: 'Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome'
By Anthony L. Komaroff & Robert Dantzer
'Many similar underlying biological abnormalities have been identified in both conditions including autoantibodies against neural targets, endothelial dysfunction, acquired mitochondrial dysfunction, and a pro-inflammatory gut microbiome. Each of these abnormalities may directly cause some of the symptoms. In addition, the symptoms also may be caused by ancient, evolutionarily conserved symptomatic and metabolic responses to vital threats—sickness behavior and torpor—responses mediated by specific, recently discovered neural circuits. These neural circuits constitute a symptom-generating pathway, activated by neuroinflammation, which may be targeted by therapeutics to quell neuroinflammation.’
'We propose another target for therapy: the neuroinflammation that activates the neural circuits that may generate sickness symptoms—including fatigue, brain fog, and pain. Targeting neuroinflammation may reduce many of the symptoms of these illnesses, at least in a substantial fraction of people. However, experience suggests that traditional anti-inflammatory drugs are unlikely to be effective and that new therapies will be required.’
By Anthony L. Komaroff & Robert Dantzer
'Many similar underlying biological abnormalities have been identified in both conditions including autoantibodies against neural targets, endothelial dysfunction, acquired mitochondrial dysfunction, and a pro-inflammatory gut microbiome. Each of these abnormalities may directly cause some of the symptoms. In addition, the symptoms also may be caused by ancient, evolutionarily conserved symptomatic and metabolic responses to vital threats—sickness behavior and torpor—responses mediated by specific, recently discovered neural circuits. These neural circuits constitute a symptom-generating pathway, activated by neuroinflammation, which may be targeted by therapeutics to quell neuroinflammation.’
'We propose another target for therapy: the neuroinflammation that activates the neural circuits that may generate sickness symptoms—including fatigue, brain fog, and pain. Targeting neuroinflammation may reduce many of the symptoms of these illnesses, at least in a substantial fraction of people. However, experience suggests that traditional anti-inflammatory drugs are unlikely to be effective and that new therapies will be required.’
rvallee
Senior Member (Voting Rights)
Dakota15
Senior Member (Voting Rights)
Mass General: 'Drug for celiac disease shows promise in treating severe post-COVID syndrome in children’
'A small, randomized clinical trial led by Mass General Brigham investigators found the oral drug larazotide—an experimental drug originally designed to treat celiac disease—was both safe and effective in treating children with MIS-C.'
'Their results are published in Science Translational Medicine.’
"While our study is small, its results are powerful and have implications not only for MIS-C, but potentially for long COVID," said lead author Lael Yonker, MD, co-director of the Cystic Fibrosis Center, Cystic Fibrosis Therapeutic Development Center, and Pulmonary Genetics Clinic at Mass General Brigham for Children.
"Our findings suggest that larazotide is safe and quickly resolves symptoms in children with MIS-C. We are now running a clinical trial to test whether larazotide may also be a useful therapy to treat patients with long COVID.”
'A small, randomized clinical trial led by Mass General Brigham investigators found the oral drug larazotide—an experimental drug originally designed to treat celiac disease—was both safe and effective in treating children with MIS-C.'
'Their results are published in Science Translational Medicine.’
"While our study is small, its results are powerful and have implications not only for MIS-C, but potentially for long COVID," said lead author Lael Yonker, MD, co-director of the Cystic Fibrosis Center, Cystic Fibrosis Therapeutic Development Center, and Pulmonary Genetics Clinic at Mass General Brigham for Children.
"Our findings suggest that larazotide is safe and quickly resolves symptoms in children with MIS-C. We are now running a clinical trial to test whether larazotide may also be a useful therapy to treat patients with long COVID.”
I made a thread for the study here: https://www.s4me.info/threads/viral...ated-with-larazotide-2025-yonker-et-al.45378/
Dakota15
Senior Member (Voting Rights)
Sharing from Twitter
#NotJustFatigue: "Big win in the Senate! After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap—and is now directing NIH to create a detailed implementation plan. This is a major step forward in the fight for treatments, diagnostics, and answers. The Senate language comes straight from our advocacy and @MEActNet, and shows that your voice is being heard. The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We’ll be fighting to keep this language intact."
"The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority."
Here is the FY26 Appropriations Senate LHHS report, if you search Long COVID or ME/CFS in it.
#NotJustFatigue: "Big win in the Senate! After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap—and is now directing NIH to create a detailed implementation plan. This is a major step forward in the fight for treatments, diagnostics, and answers. The Senate language comes straight from our advocacy and @MEActNet, and shows that your voice is being heard. The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We’ll be fighting to keep this language intact."
"The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority."
Here is the FY26 Appropriations Senate LHHS report, if you search Long COVID or ME/CFS in it.
We love to see it! | Jaime Seltzer
We love to see it! Not only did the Senate roundly reject cuts to science funding, but #MECFS funding was mentioned explicitly in both #NIH and #CDC appropriations language. This includes funding for the ✨ #MECFS Research Roadmap ✨ which was hard-won. The Roadmap was a longstanding project at...
www.linkedin.com
Jaime Seltzer: “We love to see it! Not only did the Senate roundly reject cuts to science funding, but #MECFS funding was mentioned explicitly in both #NIH and #CDC appropriations language.This includes funding for the
#MECFS Research Roadmap which was hard-won.The Roadmap was a longstanding project at NIH within #NINDS, where the world's best #MECFS researchers created a report re: the state of the field, inc. a gap analysis. The effort was monumental, featuring more researchers, clinicians, and people with lived experience than I can name here, including #MEAction Executive Director Laurie Jones: https://lnkd.in/gdg3faRV.#MEAction fought hard for the Research Roadmap to be funded, launching a petition that netted
thousands of signatures : https://lnkd.in/gj_AWitc. So many advocates gave of their time and very limited energy to ensure that researchers have access to the funds they need to further #MECFS research.Now, the Senate Appropriations language is unequivocal: Fund #MECFS.”
#NIH:
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.-The Committee recognizes the urgent need to advance research for #MECFS, especially given its overlap with #LongCOVID... and commends #NIH for approving the ME/CFS Research Roadmap. The Committee encourages #NIH to implement the roadmap's recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. #NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment."
#CDC:
Given that a subset of patients with post-acute COVID–19 and other post-infectious syndromes meet the diagnostic criteria for #MECFS, the Committee continues to encourage CDC to develop a national epidemiological & disease tracking study of post-infectious syndromes prevalence, specifically the rates of ME/CFS in adults. The Committee encourages CDC to strengthen collaboration with (1) interagency partners, (2) disease experts and stakeholders, and (3) the NIH’s Collaborative Research Centers. Additionally, the Committee urges CDC to conduct a series of epidemiological studies into the causes, diagnosis, and risk factors of ME/CFS. The Committee expects CDC to engage physicians and patients in an effort to increase awareness of ME/CFS and disseminate updated clinical guidance. Finally, the Committee supports CDC’s successful Project ECHO-style primary care provider education programs and encourages CDC to explore expanding the program to additional States and regions, with a special focus on rural and underserved communities.
Appropriations language: https://lnkd.in/g57dvWNt
STAT News: https://lnkd.in/g82c7jbx
Dakota15
Senior Member (Voting Rights)
Massachusetts General Hospital: 'Post-Infection Symptoms Explored: Deep Dive'
'In this Q&A, Dr. Komaroff shares what motivated this research and what it could mean for how we understand, diagnose, and treat these complex conditions.'
Excerpts:
"We think it is likely that these symptoms may be driven by evolutionarily-conserved responses to vital threats that are seen in all animals that have been studied.
'We suspect these behavioral and metabolic changes may be caused by recently discovered groups of dedicated brain cells (neurons) when they are stimulated by an infection or other cause of brain inflammation.’
Long COVID has brought visibility to post-infectious syndromes, because its cause is a specific infectious agent This has given credibility to the claim of many ME/CFS patients that their illness began following an acute infection—one in which no infectious agent was tested for.
Our review proposes that neuroinflammation—immune activation within the brain—is one key driver of symptoms. It stimulates the specific neural circuits that produce sickness behavior and metabolic changes.”
'In this Q&A, Dr. Komaroff shares what motivated this research and what it could mean for how we understand, diagnose, and treat these complex conditions.'
Excerpts:
"We think it is likely that these symptoms may be driven by evolutionarily-conserved responses to vital threats that are seen in all animals that have been studied.
'We suspect these behavioral and metabolic changes may be caused by recently discovered groups of dedicated brain cells (neurons) when they are stimulated by an infection or other cause of brain inflammation.’
Long COVID has brought visibility to post-infectious syndromes, because its cause is a specific infectious agent This has given credibility to the claim of many ME/CFS patients that their illness began following an acute infection—one in which no infectious agent was tested for.
Our review proposes that neuroinflammation—immune activation within the brain—is one key driver of symptoms. It stimulates the specific neural circuits that produce sickness behavior and metabolic changes.”
Dakota15
Senior Member (Voting Rights)
The Inquirer and Mirror: 'Researchers look to Nantucket for answers on chronic Lyme disease'
'Telford and his research team will be stationed at the 131 Pleasant Street Trailer on Friday, from 9 a.m. to 5 p.m., collecting blood samples and health surveys from volunteers. The effort is part of a five-year, $20 million study funded by the National Institutes of Health and led by Tufts University.'
'The goal is to better understand how people in tick and mosquito heavy areas like Nantucket are unknowingly exposed to infections that could be contributing to long-term symptoms.'
“A big complaint by a lot of Lyme patients is that their chronic illness is not taken seriously,” he said. “There is a true group of people who get Lyme disease, they get treated, and they don’t feel right for a long time after.”
"Part of the challenge is that the symptoms commonly associated with chronic Lyme, like fatigue, aches and pains, headaches, and brain fog overlap with a number of other conditions:.
“It can be confused with a lot of things,” Telford said. “And the big problem for me as an epidemiologist is: how do I distinguish this persistent illness from another, like long COVID?”
'Telford and his research team will be stationed at the 131 Pleasant Street Trailer on Friday, from 9 a.m. to 5 p.m., collecting blood samples and health surveys from volunteers. The effort is part of a five-year, $20 million study funded by the National Institutes of Health and led by Tufts University.'
'The goal is to better understand how people in tick and mosquito heavy areas like Nantucket are unknowingly exposed to infections that could be contributing to long-term symptoms.'
“A big complaint by a lot of Lyme patients is that their chronic illness is not taken seriously,” he said. “There is a true group of people who get Lyme disease, they get treated, and they don’t feel right for a long time after.”
"Part of the challenge is that the symptoms commonly associated with chronic Lyme, like fatigue, aches and pains, headaches, and brain fog overlap with a number of other conditions:.
“It can be confused with a lot of things,” Telford said. “And the big problem for me as an epidemiologist is: how do I distinguish this persistent illness from another, like long COVID?”
ahimsa
Senior Member (Voting Rights)
I noticed that there's a scrolling section at the top of that website (Mirage News). For those who have trouble with motion on websites here's another source (Eureka Alert) with the same story:
Why do symptoms linger in some people after an infection? A conversation on post-acute infection syndromes
Dolphin
Senior Member (Voting Rights)
U.S. Court of Appeals rules on a disability case regarding someone with CFS/FM:
https://media.ca7.uscourts.gov/cgi-...:24-1718:J:Maldonado:aut:T:fnOp:N:3405270:S:0
https://media.ca7.uscourts.gov/cgi-...:24-1718:J:Maldonado:aut:T:fnOp:N:3405270:S:0
Dakota15
Senior Member (Voting Rights)
Santa Fe New Mexican: 'Long COVID symposium in Santa Fe aims to improve diagnoses, treatment’
'Altmann said the symposium is about inviting international experts on long COVID together to “knock their heads together” in search of answers for patients.’
“There are so many bright people and so many opinions and so much data published — so why aren’t we making people better?” Altmann said.
Because patient advocates have played such a significant role in pushing for long COVID research, the symposium will include representation from patients and advocates. Hannah Davis, an artist, data scientist and one of the founders of the Patient-Led Research Collaborative for long COVID, coordinated the conference alongside scientists like Altmann.
All told, Altmann said he’s optimistic researchers will find “the beginnings of the answer” on long COVID in Santa Fe later this month.
“There’s 400 million really miserable people around the world suffering with this thing, and it’d be very gratifying if they could associate the turning point, the tipping point with Santa Fe,” Altmann said.
'Altmann said the symposium is about inviting international experts on long COVID together to “knock their heads together” in search of answers for patients.’
“There are so many bright people and so many opinions and so much data published — so why aren’t we making people better?” Altmann said.
Because patient advocates have played such a significant role in pushing for long COVID research, the symposium will include representation from patients and advocates. Hannah Davis, an artist, data scientist and one of the founders of the Patient-Led Research Collaborative for long COVID, coordinated the conference alongside scientists like Altmann.
All told, Altmann said he’s optimistic researchers will find “the beginnings of the answer” on long COVID in Santa Fe later this month.
“There’s 400 million really miserable people around the world suffering with this thing, and it’d be very gratifying if they could associate the turning point, the tipping point with Santa Fe,” Altmann said.
rvallee
Senior Member (Voting Rights)
Denied.
They keep repeating this claim that "several jobs exist in the national economy that Padua could perform" throughout the decision. I'm not sure of the legal doctrine behind imagination-based careers. I have no idea what a "document preparer" could even mean, I guess it means paralegal, while the other examples are repetitive physical jobs that generally require standing up for 8h per work day. But they say she "appears alert and in no acute distress", because the only two possible states of human conscious alertness are fully functional and comatose, apparently.
The whole decision rests on the standard medical fallacy: no objective tests to confirm, patient says X, doctors disagree. This is hardly any more professional than whatever could have been going on a millennium ago making such decisions, and the decision isn't based on legal doctrine, it's entirely based around expert medical opinion. It's truly amazing how one of the most important professions is still partly stuck at the "Ugh smash rock" stage of development.
Appalling, infuriating, and terrifying - not only for the individual tragedy, but for the likelihood that this may be cited as precedent henceforth.
I do note, however, that "chronic fatigue" is used throughout, with "chronic fatigue syndrome" appearing only once - it is not clear to me whether this reflects the filing(s) or whether this is a deliberate confusion on the part of the court. The SSA's policy interpretation ruling regarding CFS (SSR 14-1p: Titles II and XVI) is not referenced anywhere.
This said, the wanton cruelty apparent in the acknowledgement that the trigger point assessment was indeed abnormal (the only abnormal finding apparently) and that this is "the only recognized test for diagnosing fibromyalgia" while continuing to assert a "conflict" between the medical evaluation and the patient's reported disability suggests that this was going to be rejected no matter what.
Absolutely sickening.
shak8
Senior Member (Voting Rights)
This is why I applied to my state's vocational rehab program before applying for social security disability: to try to find something I could do. I found a counselor there who used to work for social security disability and he showed me how to word my application for disability.
That is what I would urge people to do: go to their state's vocational rehab office apply for the program and try out various lines of work. You have to come up with ideas of what types of jobs you think you might be able to do. Then they support your effort, with some money and leads.
It shows good faith and is objective evidence of work failures. Document, document, document. Every visit to doctor hand him/her what you need to add to medical record (it will be requested by social security).
It's a job getting through this process successfully and longish and is probably more restrictive these days than back 25 yrs ago.
During the requisite physical exam, I was crying but not from tender points because I didn't have any that day. I had a lovely physician who was very kind. It took two years to get on medical insurance and disability payments, but I had no choice, did I.
If you are denied, you should contact a lawyer specialize in disability law and strategize the best way forward to appeal the decision. Yes, the whole process is unfair.
Edited to add: it's a war or a serious chess match: the patient vs the social security disability system. One must spend time gathering reliable information from patient groups and specialized lawyers before proceeding to the application process. It's like a criminal trial, in a way.
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wigglethemouse
Senior Member (Voting Rights)
In the US if you are under 50 it is much harder to get disability as it is written into policy that people can retrain for other jobs such as sedentary ones. At 50 and above this requirement is less stringent.
As for medical records noting appearance, attention, alertness, that gets written always. When you have a long term condition you get used to being alert at medical appointments as you need to get the most out of them. I never see wheel chair use, or need to elevate feet or lie down during appointment written down.
The moral of the story is also that the claimant should have taken high power pain meds for fibromyalgia otherwise they don't have debilitating pain. Ugh, if only the pain killers really worked in the real world.
wigglethemouse
Senior Member (Voting Rights)
This. Your notes get added to the file, even if you don't see them. What you see online on your record is often different from a full records request.
V.R.T.
Senior Member (Voting Rights)
Do we know if the DecodeME team will be attending?
Dakota15
Senior Member (Voting Rights)
Families USA: 'Armond Dai: Navigating Long COVID, Disability Hurdles and Medicaid Cuts'
'Armond Dai was building a promising career in architecture in Washington, DC when everything changed. After contracting COVID-19 twice, he developed a series of chronic illnesses that left him unable to work and desperate for answers. To this day Long COVID is not widely understood, and without clear lab results, qualifying for disability benefits became a daunting challenge.
Armond now lives with myalgic encephalomyelitis (also known as chronic fatigue syndrome) and an immune deficiency that leaves him vulnerable to frequent infections. “It’s not something you can just push through,” Armond said. “If you push through it, it will actually deteriorate your body further, and I realized I need to survive. I need to live.”
Like many people facing long COVID and other disabling conditions, Armond was forced to leave the life he had built behind.'
'Armond Dai was building a promising career in architecture in Washington, DC when everything changed. After contracting COVID-19 twice, he developed a series of chronic illnesses that left him unable to work and desperate for answers. To this day Long COVID is not widely understood, and without clear lab results, qualifying for disability benefits became a daunting challenge.
Armond now lives with myalgic encephalomyelitis (also known as chronic fatigue syndrome) and an immune deficiency that leaves him vulnerable to frequent infections. “It’s not something you can just push through,” Armond said. “If you push through it, it will actually deteriorate your body further, and I realized I need to survive. I need to live.”
Like many people facing long COVID and other disabling conditions, Armond was forced to leave the life he had built behind.'