In case anybody does not know, Children's Health Defense (Wikipedia article) is the organisation JFK Jr. helped set up and run to promote scepticism about vaccines and other some public health measures like fluoridation of water supplies.
News from the USA, United States of America
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Dakota15
Senior Member (Voting Rights)
2/11, Make Visible: Understanding Complex Illness: “Exploring the drivers of post-infectious illness, with Harvard Neuroimmunologist Michael VanElzakker”
“Where with ME, I don't really think that what happens in most cases is that there's a trigger that is then gone but then has lasting effects. I suspect in the words of the NIH's recent study that I know people criticize, but there were some parts that people should notice like persistent antigenic stimulation.”
“Where with ME, I don't really think that what happens in most cases is that there's a trigger that is then gone but then has lasting effects. I suspect in the words of the NIH's recent study that I know people criticize, but there were some parts that people should notice like persistent antigenic stimulation.”
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Dolphin
Senior Member (Voting Rights)
“Lipkin is personally donating money to help keep a small portion of the research afloat, but this barely covers a single employee and some supplies, he said.”
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Dakota15
Senior Member (Voting Rights)
Univ. of Utah: 'Ever curious but often distracted is how Clayton Powers would describe himself—and he’ll tell you he never cared much for school'
'Determined to help, he dedicated his free time studying conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which causes extreme fatigue, muscle weakness, and brain fog—often linked to long COVID. After a global pandemic, some COVID survivors were affected long-term, potentially forever, with new symptoms of dizziness and unrelenting fatigue. Clayton quickly realized that traditional treatment methods—like exercise—were not working for his patients. Instead, he changed his approach to focus on personalized treatment plans that focus on pacing energy, calming the nervous system, and improving blood flow.'
'These new insights into personalized PT treatments led Clayton to educate physical therapists worldwide and partner with the Bateman Horne Center, a Salt Lake City research and clinical care facility that focuses on patients with multi-symptom chronic complex diseases.
'Determined to help, he dedicated his free time studying conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which causes extreme fatigue, muscle weakness, and brain fog—often linked to long COVID. After a global pandemic, some COVID survivors were affected long-term, potentially forever, with new symptoms of dizziness and unrelenting fatigue. Clayton quickly realized that traditional treatment methods—like exercise—were not working for his patients. Instead, he changed his approach to focus on personalized treatment plans that focus on pacing energy, calming the nervous system, and improving blood flow.'
'These new insights into personalized PT treatments led Clayton to educate physical therapists worldwide and partner with the Bateman Horne Center, a Salt Lake City research and clinical care facility that focuses on patients with multi-symptom chronic complex diseases.
Dakota15
Senior Member (Voting Rights)
Literary Hub by Jessie Chaffee: 'A Single Ray of Light: On Ray Bradbury’s “All Summer in a Day” and Living in the Shadow of Long COVID'
'I’ve felt isolated in this experience, but I am not alone. I’ve felt invisible, but there are activists like the three women testifying—and all the advocates beside them—who, despite the prisons of their bodies, have found a way to make their voices heard, to ensure that people are noticing the missing.'
'I’ve felt isolated in this experience, but I am not alone. I’ve felt invisible, but there are activists like the three women testifying—and all the advocates beside them—who, despite the prisons of their bodies, have found a way to make their voices heard, to ensure that people are noticing the missing.'
Dakota15
Senior Member (Voting Rights)
Waverly Newspaper: 'Forging our Future Together: Get serious about long COVID, vaccines'
'Many of us talk about COVID in the past tense, but for roughly 7% of Iowans suffering from Long COVID like me, the pandemic never ended'
'I can't always think straight (brain fog). If I do too much stuff on any given day I get flu-like symptoms including crushing fatigue…for days sometimes. (This is called PEM, or Post Exertion Malaise.)'
'I'm writing this with three hopes. First, know there are people around you suffering from Long COVID that need your support. Second, please get vaccinated. Do it for people like me, who are one infection away from being severely disabled.
Do it for the people you care about so that they can avoid Long COVID. Do it for yourself. You don't want what I have, trust me.
Third, please contact both your state and federal representatives and let them know how important access to vaccines is to you, and the people you care about.'
'Many of us talk about COVID in the past tense, but for roughly 7% of Iowans suffering from Long COVID like me, the pandemic never ended'
'I can't always think straight (brain fog). If I do too much stuff on any given day I get flu-like symptoms including crushing fatigue…for days sometimes. (This is called PEM, or Post Exertion Malaise.)'
'I'm writing this with three hopes. First, know there are people around you suffering from Long COVID that need your support. Second, please get vaccinated. Do it for people like me, who are one infection away from being severely disabled.
Do it for the people you care about so that they can avoid Long COVID. Do it for yourself. You don't want what I have, trust me.
Third, please contact both your state and federal representatives and let them know how important access to vaccines is to you, and the people you care about.'
Dakota15
Senior Member (Voting Rights)
New York Times - Wirecutter: 'Most Wearables Prompt You to Move More. This One Helps You Avoid Overdoing It.'
'Pacing is key to Visible’s approach'
'The signature symptom of long COVID and ME/CFS is post-exertional malaise'
'Pacing is key to Visible’s approach'
'The signature symptom of long COVID and ME/CFS is post-exertional malaise'
rvallee
Senior Member (Voting Rights)
How Family Physicians Can Better Diagnose and Treat Long COVID
https://www.aafp.org/news/health-of-the-public/long-covid-treatment-diagnosis.html
“The best way to prevent long COVID is to prevent COVID,” Herman explains. “Anything you can do to prevent COVID prevents long COVID. We also know that people that get multiple COVID infections are more likely to develop long COVID. Someone who's had one COVID infection is less likely to get long COVID compared to somebody that's had three or four or five or six acute episodes of COVID.”
One vital step toward that prevention is to advise patients to stay up to date with COVID vaccinations. Additionally, some studies indicate that treatment with nirmatrelvir/ritonavir (Paxlovid) during an acute COVID infection can prevent some patients from ending up with long COVID.
Herman says the best way to help patients who have long COVID recover is to help them avoid post-exertional malaise and build stamina through pacing. The first step is to stop post-exertional malaise by working with patients to establish an understanding of their “body battery.” From there, they can work to build stamina and rebuild the basic mitochondrial capabilities of their cells. For individuals with other comorbidities, such as POTS (postural orthostatic tachycardia syndrome) ensuring proper salt and fluid intake, as well as using medicines to treat other symptoms, can be important tools.
https://www.aafp.org/news/health-of-the-public/long-covid-treatment-diagnosis.html
“The best way to prevent long COVID is to prevent COVID,” Herman explains. “Anything you can do to prevent COVID prevents long COVID. We also know that people that get multiple COVID infections are more likely to develop long COVID. Someone who's had one COVID infection is less likely to get long COVID compared to somebody that's had three or four or five or six acute episodes of COVID.”
One vital step toward that prevention is to advise patients to stay up to date with COVID vaccinations. Additionally, some studies indicate that treatment with nirmatrelvir/ritonavir (Paxlovid) during an acute COVID infection can prevent some patients from ending up with long COVID.
Herman says the best way to help patients who have long COVID recover is to help them avoid post-exertional malaise and build stamina through pacing. The first step is to stop post-exertional malaise by working with patients to establish an understanding of their “body battery.” From there, they can work to build stamina and rebuild the basic mitochondrial capabilities of their cells. For individuals with other comorbidities, such as POTS (postural orthostatic tachycardia syndrome) ensuring proper salt and fluid intake, as well as using medicines to treat other symptoms, can be important tools.
Dakota15
Senior Member (Voting Rights)
Mother Jones: 'For Some Disabled Protestors, “Hands Off” Went Virtual'
“We know we have to teach everyone how to include us.”
'At a Hands Off rally for people with Long Covid, Amanda Finley was filled with emotions.'
“We know we have to teach everyone how to include us.”
'At a Hands Off rally for people with Long Covid, Amanda Finley was filled with emotions.'
Dakota15
Senior Member (Voting Rights)
Dance Magazine: “Often Confined to His Bed, a Chronically Ill Dancer Reflects on the Joy of Kinesthetic Empathy”
‘ME/CFS is a complex, multisystem illness that stole my ability to wake up feeling rested, think clearly..’
https://t.co/H6dgRoK07Q
‘ME/CFS is a complex, multisystem illness that stole my ability to wake up feeling rested, think clearly..’
https://t.co/H6dgRoK07Q
Dakota15
Senior Member (Voting Rights)
Bloomberg: 'Should You Worry About Your Brain Fog?'
'The impairment, often associated with long Covid, doesn’t mean you’re more likely to get dementia or Alzheimer’s..'
'The phrase “brain fog” has exploded in our collective lexicon in recent years..'
'The impairment, often associated with long Covid, doesn’t mean you’re more likely to get dementia or Alzheimer’s..'
'The phrase “brain fog” has exploded in our collective lexicon in recent years..'
Dakota15
Senior Member (Voting Rights)
LA ist: “The future of Long COVID research is unknown, five years after the start of the pandemic” (20 minute audio interview)
'The future of Long COVID research is unknown, five years after the start of the pandemic'
'Today on AirTalk, we'll take a look at the latest Long COVID research and what challenges future research faces. Joining us to discuss is Dr. Kimberly Shriner, Director of Infectious Disease and Prevention at Huntington Hospital in Pasadena and Emily Taylor, President and CEO SolveME Initiative and Co-Founder of the Long Covid Alliance.'
Some excerpts:
Host: “Have we gotten any answers at this point?
Shriner: "It's been glacially slow, but we're persisting. And I think that it's beginning to kind of hone down on four major reasons for Long Covid, but we're certainly open to other possibilities. It certainly is in some sort of chronic inflammation and immune dysfunction.”
“Most of the patients have some sort of fog, neurologic fog where they have trouble doing executive thinking. Many of them have chronic fatigue...some folks have dysfunction of their cardiac regulatory system, that's called autonomic dysfunction."
“if there's maybe one good thing that came out of Covid, it's that we do have a better understanding of post-infectious viral syndromes that can cause chronic fatigue syndromes and other kinds of pain and neurocognitive issues. So I think there's really a lot to be gained and learned by studying Long Covid over the course of addressing some of these other diseases.”
Emily: “In the research space, we are really excited to see finally some progress towards clinical trials and therapies that can hopefully go bench to bedside. But as Dr. Schriner said, that it has been glacially slow and the progress has been really frustrated and only disrupted and the uncertainty around funding cuts has really caused a massive ripple in both the community and the research space and obviously for clinical care as well.”
“We are so close to kind of cracking this thing. And to have, at that moment, the rug pulled out from you in the form of these government cuts and funding losses, I think there is absolutely hope. I am so proud to represent an organization that provides private research grants and sort of fills those gaps as best we can”
'The future of Long COVID research is unknown, five years after the start of the pandemic'
'Today on AirTalk, we'll take a look at the latest Long COVID research and what challenges future research faces. Joining us to discuss is Dr. Kimberly Shriner, Director of Infectious Disease and Prevention at Huntington Hospital in Pasadena and Emily Taylor, President and CEO SolveME Initiative and Co-Founder of the Long Covid Alliance.'
Some excerpts:
Host: “Have we gotten any answers at this point?
Shriner: "It's been glacially slow, but we're persisting. And I think that it's beginning to kind of hone down on four major reasons for Long Covid, but we're certainly open to other possibilities. It certainly is in some sort of chronic inflammation and immune dysfunction.”
“Most of the patients have some sort of fog, neurologic fog where they have trouble doing executive thinking. Many of them have chronic fatigue...some folks have dysfunction of their cardiac regulatory system, that's called autonomic dysfunction."
“if there's maybe one good thing that came out of Covid, it's that we do have a better understanding of post-infectious viral syndromes that can cause chronic fatigue syndromes and other kinds of pain and neurocognitive issues. So I think there's really a lot to be gained and learned by studying Long Covid over the course of addressing some of these other diseases.”
Emily: “In the research space, we are really excited to see finally some progress towards clinical trials and therapies that can hopefully go bench to bedside. But as Dr. Schriner said, that it has been glacially slow and the progress has been really frustrated and only disrupted and the uncertainty around funding cuts has really caused a massive ripple in both the community and the research space and obviously for clinical care as well.”
“We are so close to kind of cracking this thing. And to have, at that moment, the rug pulled out from you in the form of these government cuts and funding losses, I think there is absolutely hope. I am so proud to represent an organization that provides private research grants and sort of fills those gaps as best we can”
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Dakota15
Senior Member (Voting Rights)
Medscape: 'Long COVID Cuts Imperil Treatment Progress, Researchers Warn'
“Millions of Americans are suffering, and they are depending on us for new treatments and care,” said Grace McComsey, MD, who leads one of the 15 nationwide long-COVID centers funded by the federal RECOVER Initiative in Cleveland.
Data from RECOVER found that people with long COVID were more than twice as likely to have viral remnants in their blood, said McComsey.
“There was a promise that we would focus on chronic diseases, and long COVID is a chronic disease with more than a million people disabled as a result of it,” said McComsey.
“Millions of Americans are suffering, and they are depending on us for new treatments and care,” said Grace McComsey, MD, who leads one of the 15 nationwide long-COVID centers funded by the federal RECOVER Initiative in Cleveland.
Data from RECOVER found that people with long COVID were more than twice as likely to have viral remnants in their blood, said McComsey.
“There was a promise that we would focus on chronic diseases, and long COVID is a chronic disease with more than a million people disabled as a result of it,” said McComsey.
Dakota15
Senior Member (Voting Rights)
4/7/25, American Medical Association: 'Long COVID 2025: Symptoms, diagnosis, post-COVID treatments and the latest long COVID research'
'Akiko Iwasaki, PhD, Sterling Professor of Immunobiology at Yale University, discusses new long COVID research...'
'Akiko Iwasaki, PhD, Sterling Professor of Immunobiology at Yale University, discusses new long COVID research...'
Dakota15
Senior Member (Voting Rights)
Nature: 'Long COVID activists fought Trump team’s research cuts and won ― for now'
'Success gives hope to scientists and advocates who managed to get millions of dollars in grants restored.'
“The long COVID patient community is reeling and flabbergasted by what they’re seeing,,” says Emily Taylor, president of the Solve ME/CFS Initiative and based in Glendale, California. “We’ve been telling congresspeople, ‘Stop cutting, first thing. Stop hurting us. Stop the pain.’”
Free archive link here: https://archive.ph/kdOc9
'Success gives hope to scientists and advocates who managed to get millions of dollars in grants restored.'
“The long COVID patient community is reeling and flabbergasted by what they’re seeing,,” says Emily Taylor, president of the Solve ME/CFS Initiative and based in Glendale, California. “We’ve been telling congresspeople, ‘Stop cutting, first thing. Stop hurting us. Stop the pain.’”
Free archive link here: https://archive.ph/kdOc9
Dakota15
Senior Member (Voting Rights)
National Geographic: 'What exactly is brain fog? Here’s what scientists are finding out.'
'Scientists have long struggled to define brain fog—let alone pinpoint a cause for it. But research is starting to reveal multiple potential causes from inflammation to a leaky blood-brain barrier.
After a COVID-19 infection, many patients found themselves in a fog. Their attention wandered, their memory faltered. They felt sluggish, had trouble thinking straight, and struggled with basic chores.'
'Patients report brain fog as a consequence of chronic conditions including fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, and lupus. '
'“One of the biggest hypotheses for what underlies brain fog in all of these different conditions is neuroinflammation,” Becker says.
'Nath and his team are also studying the effects of intravenous immunoglobulin, an antibody that is used to treat immunological disorders like lupus, on long COVID. The theory is that it will suppress the immune system’s excessive inflammatory response, which would in turn keep the body from damaging healthy cells and alleviate brain fog. Next, they also want to try using checkpoint inhibitors, a type of immunotherapy typically used to help the body's immune system fight cancer, in cases of long COVID, too.'
'Scientists have long struggled to define brain fog—let alone pinpoint a cause for it. But research is starting to reveal multiple potential causes from inflammation to a leaky blood-brain barrier.
After a COVID-19 infection, many patients found themselves in a fog. Their attention wandered, their memory faltered. They felt sluggish, had trouble thinking straight, and struggled with basic chores.'
'Patients report brain fog as a consequence of chronic conditions including fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, and lupus. '
'“One of the biggest hypotheses for what underlies brain fog in all of these different conditions is neuroinflammation,” Becker says.
'Nath and his team are also studying the effects of intravenous immunoglobulin, an antibody that is used to treat immunological disorders like lupus, on long COVID. The theory is that it will suppress the immune system’s excessive inflammatory response, which would in turn keep the body from damaging healthy cells and alleviate brain fog. Next, they also want to try using checkpoint inhibitors, a type of immunotherapy typically used to help the body's immune system fight cancer, in cases of long COVID, too.'
Dakota15
Senior Member (Voting Rights)
April 10, 2025 - Yale School of Public Health: 'The State of Long COVID: A Panel Discussion with Researchers, Disability Advocates, and Students'
Panelists - including Yale Medicine's Dr. Akiko Iwasaki, Mt. Sinai's Dr. David Putrino, and more - will discuss Long COVID's far-reaching effects, emerging scientific findings about its causes, and hopeful developments in prevention and treatment, while advocates and students will share their perspectives on navigating viral threats.
The event can be attended in-person at the Winslow Auditorium, or virtually on Zoom.
Panelists - including Yale Medicine's Dr. Akiko Iwasaki, Mt. Sinai's Dr. David Putrino, and more - will discuss Long COVID's far-reaching effects, emerging scientific findings about its causes, and hopeful developments in prevention and treatment, while advocates and students will share their perspectives on navigating viral threats.
The event can be attended in-person at the Winslow Auditorium, or virtually on Zoom.
Dakota15
Senior Member (Voting Rights)
KPBS: 'Patients struggle with long COVID years after pandemic began'
'San Diegans like Jason Rissman are still fighting to recover — not just physically, but in a health care system that often fails to support them'
'San Diegans like Jason Rissman are still fighting to recover — not just physically, but in a health care system that often fails to support them'
Dakota15
Senior Member (Voting Rights)
Boosting from #NotJustFatigue.
https://twitter.com/user/status/1909671972327276879
Text: "Just received word that Dr. W. Ian Lipkin is doing a live podcast with Howard Zucker TOMORROW Wednesday April 9 at 1 pm ET. It’s an opportunity for members of the community to ask questions and highlight concerns. LINK: https://letshang.live/event/d8f2e132-docology-world-health-alert "
https://twitter.com/user/status/1909671972327276879
Text: "Just received word that Dr. W. Ian Lipkin is doing a live podcast with Howard Zucker TOMORROW Wednesday April 9 at 1 pm ET. It’s an opportunity for members of the community to ask questions and highlight concerns. LINK: https://letshang.live/event/d8f2e132-docology-world-health-alert "
Dakota15
Senior Member (Voting Rights)
April 2025 Issue, Access Press: 'ME/CFS, ties to Long COVID are the focus of ongoing research studies'
'Understanding the effects of Long COVID may also mean understanding what is called ME/CFS.'
'Another term used in the MDH presentation is “crash.” A crash is a colloquial term for post-exertion malaise (PEM). It happens when people with ME/CFS use up more energy than they have.'
'Access Press provides coverage of COVID issues with support from the Metropolitan Center for Independent Living (MCIL). This activity is made possible by a grant from the Long COVID Program of the Minnesota Department of Health.'
'Understanding the effects of Long COVID may also mean understanding what is called ME/CFS.'
'Another term used in the MDH presentation is “crash.” A crash is a colloquial term for post-exertion malaise (PEM). It happens when people with ME/CFS use up more energy than they have.'
'Access Press provides coverage of COVID issues with support from the Metropolitan Center for Independent Living (MCIL). This activity is made possible by a grant from the Long COVID Program of the Minnesota Department of Health.'