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Long Covid in the media and social media 2023
- Thread starter rvallee
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Mij
Senior Member (Voting Rights)
Many Canadians have had long COVID for almost 4 years. Researchers say there is hope.
Forty-two per cent of the people in Canada reporting lasting symptoms had them for a year or more - and for many, they haven't resolved, StatCan's report said.
But Canadian doctors and scientists want long COVID patients to know that research is accelerating.
Long COVID Web, a research network of close to 600 health-care practitioners, scientists and patients across Canada, aims to not only help manage symptoms, but also find “solutions to get rid of long COVID,” said Dr. Angela Cheung, the network's lead and a senior physician-scientist at University Health Network in Toronto.
Long COVID affects many different systems in the body, Cheung said, with the most common symptoms including fatigue, brain fog, cardiovascular problems and shortness of breath.
Cheung has seen many patients improve, and “quite a few” have even returned to their “baseline” functioning before COVID.
“Why some can return to baseline and others cannot, I'm not sure. But certainly it's something that we need to better understand,” she said.
https://www.ctvnews.ca/health/many-...-years-researchers-say-there-s-hope-1.6688628
Forty-two per cent of the people in Canada reporting lasting symptoms had them for a year or more - and for many, they haven't resolved, StatCan's report said.
But Canadian doctors and scientists want long COVID patients to know that research is accelerating.
Long COVID Web, a research network of close to 600 health-care practitioners, scientists and patients across Canada, aims to not only help manage symptoms, but also find “solutions to get rid of long COVID,” said Dr. Angela Cheung, the network's lead and a senior physician-scientist at University Health Network in Toronto.
Long COVID affects many different systems in the body, Cheung said, with the most common symptoms including fatigue, brain fog, cardiovascular problems and shortness of breath.
Cheung has seen many patients improve, and “quite a few” have even returned to their “baseline” functioning before COVID.
“Why some can return to baseline and others cannot, I'm not sure. But certainly it's something that we need to better understand,” she said.
https://www.ctvnews.ca/health/many-...-years-researchers-say-there-s-hope-1.6688628
rvallee
Senior Member (Voting Rights)
Hope is not a strategy. This is asinine. All this does is give cover to the health care industry for having nothing to show for it after almost 4 years of Long Covid, and decades to work this problem before, which isn't mentioned yet again.
Medicine is basically engaging in a participation trophy culture, except they're not even trying. They should be ashamed of themselves for saying this stuff out loud.
RedFox
Senior Member (Voting Rights)
That's why I don't try hard to find a treatment for ME. Trying to get anything treated is exhausting.
rvallee
Senior Member (Voting Rights)
(Not a recommendation)
How to treat long Covid — the experts on what really works
https://archive.ph/qgNBQ#selection-1815.0-1815.58
4 years. Nothing learned. Nothing at all. Patients are on their own, it's all down to chance, and somehow that's hopeful. They had "lofty aspirations" and yet are stuck doing the same failed pseudoscientific nonsense that blinded them to this for decades.
What you get in a profession that is under no pressure to deliver anything and faces no competition or accountability, can simply coast doing nothing and get participation trophies anyway.
How to treat long Covid — the experts on what really works
https://archive.ph/qgNBQ#selection-1815.0-1815.58
For fatigue, they draw on experiences doctors have had in helping patients with ME, multiple sclerosis and Parkinson’s disease, and recommend trying to conserve energy by pursuing the three Ps: prioritising the things you need to do; planning each day carefully; pacing yourself so you don’t try to operate as you used to do before you had Covid.
...
Emma Tucker, a specialist respiratory physiotherapist at the Oxfordshire clinic, says that many holistic therapies that patients are trialling have been found to be beneficial, including restorative yoga, t’ai chi and cold water swimming. “These are all very individual but do appear to help manage many of the symptoms,” she says. “The most important message is rest — to stop pushing through. But this can be so hard for individuals as it goes against internal voices and pre-existing understanding of managing illnesses.”
Some long Covid sufferers swear by the Lightning Process, a brain-training programme that combines neuro-linguistic programming with life coaching, hypnotherapy and osteopathy. It is not on the NHS and is expensive. Tucker won’t comment specifically on the treatment but says: “Many patients are trialling lots of different therapies, many expensive and under-researched in the medical profession. But understandably people are desperate and need to get better so will trial everything that is suggested.”
...
“We had lofty aspirations when we first started to get people back to where they were,” Fraser says. “People are definitely getting better. Whether or not people get back to where they once were is a different question and one that’s harder to answer. Do we get people back to that kind of fast pace of life or a functional pace of life? They are two different things. We aim for the latter.”
...
Emma Tucker, a specialist respiratory physiotherapist at the Oxfordshire clinic, says that many holistic therapies that patients are trialling have been found to be beneficial, including restorative yoga, t’ai chi and cold water swimming. “These are all very individual but do appear to help manage many of the symptoms,” she says. “The most important message is rest — to stop pushing through. But this can be so hard for individuals as it goes against internal voices and pre-existing understanding of managing illnesses.”
Some long Covid sufferers swear by the Lightning Process, a brain-training programme that combines neuro-linguistic programming with life coaching, hypnotherapy and osteopathy. It is not on the NHS and is expensive. Tucker won’t comment specifically on the treatment but says: “Many patients are trialling lots of different therapies, many expensive and under-researched in the medical profession. But understandably people are desperate and need to get better so will trial everything that is suggested.”
...
“We had lofty aspirations when we first started to get people back to where they were,” Fraser says. “People are definitely getting better. Whether or not people get back to where they once were is a different question and one that’s harder to answer. Do we get people back to that kind of fast pace of life or a functional pace of life? They are two different things. We aim for the latter.”
4 years. Nothing learned. Nothing at all. Patients are on their own, it's all down to chance, and somehow that's hopeful. They had "lofty aspirations" and yet are stuck doing the same failed pseudoscientific nonsense that blinded them to this for decades.
What you get in a profession that is under no pressure to deliver anything and faces no competition or accountability, can simply coast doing nothing and get participation trophies anyway.
rvallee
Senior Member (Voting Rights)
Includes link to the recent "Long-term outcomes following hospital admission for COVID-19 versus seasonal influenza: a cohort study" paper. Meanwhile public health and health care officials are ignoring LC entirely, so it's good to see someone on the science side pay attention to the, you know, science.Dr. Mona Nemer - Chief Science Advisor of Canada said:
UCSF LC update. Question to panel on whether they continue to mask to avoid LC. Universal yes, which they note in contradistinction to infectious disease conferences with no masking.
---
00:04:49-00:14:13 – Ziyad Al-Aly
00:14:25-00:28:20 – Michael Peluso
00:28:30-00:45:08 – Akiko Iwasaki
00:45:18-1:03:02 – Q&A
---
00:04:49-00:14:13 – Ziyad Al-Aly
00:14:25-00:28:20 – Michael Peluso
00:28:30-00:45:08 – Akiko Iwasaki
00:45:18-1:03:02 – Q&A
a Sunday December 17, 2023 New York Times guest essay by Giorgia Lupi.
1,374 DAYS
MY LIFE WITH LONG COVID
https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html
it may be paywalled.
1,374 DAYS
MY LIFE WITH LONG COVID
https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html
it may be paywalled.
Dakota15
Senior Member (Voting Rights)
Hey all,
This evening, on KSTP News (ABC Affiliate) in Minneapolis - St. Paul, the lead story on our evening news broadcast was a report centered on Long COVID & ME/CFS.
The report ran about 2 minutes and highlighted the ongoing impacts of long COVID, the connection to ME/CFS, and reinforced that increased research funding is sorely needed for this patient population from our federal government.
I was able to help contribute some insight from my patient perspective. Andy Flosdorf, Long COVID & ME/CFS patient from Minnesota, and Treasurer of Minnesota ME/CFS Alliance, also offered his patient voice.
Kate Murray, Program Manager & Unit Supervisor for Long COVID & Post-COVID Conditions (in the Health Promotion & Chronic Disease Division) for Minnesota Department of Health (MDH) is also featured. When I receive the external link & write-up from KSTP, I will share out.
In the meantime, I will share out screenshots below in my Twitter / X thread, showing myself, Andy, and Kate. KSTP has indicated to us that they plan to continue to cover this important issue and will keep the community monitored as such for any further reporting that comes out.
This evening, on KSTP News (ABC Affiliate) in Minneapolis - St. Paul, the lead story on our evening news broadcast was a report centered on Long COVID & ME/CFS.
The report ran about 2 minutes and highlighted the ongoing impacts of long COVID, the connection to ME/CFS, and reinforced that increased research funding is sorely needed for this patient population from our federal government.
I was able to help contribute some insight from my patient perspective. Andy Flosdorf, Long COVID & ME/CFS patient from Minnesota, and Treasurer of Minnesota ME/CFS Alliance, also offered his patient voice.
Kate Murray, Program Manager & Unit Supervisor for Long COVID & Post-COVID Conditions (in the Health Promotion & Chronic Disease Division) for Minnesota Department of Health (MDH) is also featured. When I receive the external link & write-up from KSTP, I will share out.
In the meantime, I will share out screenshots below in my Twitter / X thread, showing myself, Andy, and Kate. KSTP has indicated to us that they plan to continue to cover this important issue and will keep the community monitored as such for any further reporting that comes out.
Dakota15
Senior Member (Voting Rights)
Sharing KSTP's write-up: "No treatment, no cure: Patients await answers about debilitating disease related to long COVID"
'ME/CFS can be contracted after a range of viral infections. It’s been around far longer than COVID-19, but its symptoms, in recent years, have been recognized as one of the more severe cases of long COVID.'
“We know the chronic consequences of infectious disease has been in the scientific literature for over 100 years. But for a variety of reasons, unfortunately, they’ve been very under-resourced, very underfunded, very under researched and highly overlooked,” Hanlon said."ME/CFS “has been relegated to the margins of medicine when you don’t have money and funding allocated for it,” he added.
"Hanlon and Flosdorf say if there’s a “silver lining” to the pandemic, it’s an increased effort to understand the disease which has become intertwined with long COVID."
"Earlier this year, the Minnesota Legislature invested an ongoing $3.146 million a year to address the post-COVID illnesses that have affected about 12% of Minnesotans since 2020, she said.""Hanlon and Flosdorf said they hope progress in Minnesota spurs more at the federal level as funding for research wanes."
"Hanlon invited anyone suffering from potential ME/CFS symptoms to get connected with the Minnesota ME/CFS Alliance and associated resources."
'ME/CFS can be contracted after a range of viral infections. It’s been around far longer than COVID-19, but its symptoms, in recent years, have been recognized as one of the more severe cases of long COVID.'
“We know the chronic consequences of infectious disease has been in the scientific literature for over 100 years. But for a variety of reasons, unfortunately, they’ve been very under-resourced, very underfunded, very under researched and highly overlooked,” Hanlon said."ME/CFS “has been relegated to the margins of medicine when you don’t have money and funding allocated for it,” he added.
"Hanlon and Flosdorf say if there’s a “silver lining” to the pandemic, it’s an increased effort to understand the disease which has become intertwined with long COVID."
"Earlier this year, the Minnesota Legislature invested an ongoing $3.146 million a year to address the post-COVID illnesses that have affected about 12% of Minnesotans since 2020, she said.""Hanlon and Flosdorf said they hope progress in Minnesota spurs more at the federal level as funding for research wanes."
"Hanlon invited anyone suffering from potential ME/CFS symptoms to get connected with the Minnesota ME/CFS Alliance and associated resources."
Mij
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
Policy experts, scientists, disability groups urge Biden to address the Long Covid crisis
https://thesicktimes.org/2023/12/18...-urge-biden-to-address-the-long-covid-crisis/
In the open letter published on Monday, health policy experts, leading Long Covid researchers, clinicians, journalists, chronic illness and health advocacy groups, and many others demand that Biden demonstrate support for the millions of Americans with Long COVID and infection-associated chronic conditions (IACCs). The authors demand Biden acknowledge this crisis and outline the actions his administration is taking to address it in his State of the Union address.
“Failure to address this problem,” the letter’s authors write, “will result in significant economic, health, quality of life, and societal costs, in the trillions of dollars. Moreover, every dollar invested in Long COVID and IACC research will prepare our country for future pandemics and emerging infection-associated conditions.”
...
So far, over 60 prominent researchers, clinicians, and others have signed on. They include Ezekiel Emanuel, a health policy expert, former Obama advisor, and Biden Transition COVID Task Force member, and Bob Wachter, chair of the department of medicine at the University of California, San Francisco. Other signatories include Akiko Iwasaki, Ziyad Al-Aly, Ed Yong, Eric Topol, Anthony Komaroff, David Putrino, Resia Pretorius, Michael Peluso, and many principal investigators of the National Institute of Health’s RECOVER initiative.
Also signed onto the letter are over twenty health advocacy and disability organizations, including Center for Economic and Policy Research, Long COVID Justice, LONG Covid Families, BIPOC Equity Agency, Black COVID-19 Survivors Alliance, Inc., The Black Long Covid Experience, Disability Rights California, COVID-19 Longhauler Advocacy Project, Dysautonomia International, #MEAction, and Patient-Led Research Collaborative.
https://thesicktimes.org/2023/12/18...-urge-biden-to-address-the-long-covid-crisis/
In the open letter published on Monday, health policy experts, leading Long Covid researchers, clinicians, journalists, chronic illness and health advocacy groups, and many others demand that Biden demonstrate support for the millions of Americans with Long COVID and infection-associated chronic conditions (IACCs). The authors demand Biden acknowledge this crisis and outline the actions his administration is taking to address it in his State of the Union address.
“Failure to address this problem,” the letter’s authors write, “will result in significant economic, health, quality of life, and societal costs, in the trillions of dollars. Moreover, every dollar invested in Long COVID and IACC research will prepare our country for future pandemics and emerging infection-associated conditions.”
...
So far, over 60 prominent researchers, clinicians, and others have signed on. They include Ezekiel Emanuel, a health policy expert, former Obama advisor, and Biden Transition COVID Task Force member, and Bob Wachter, chair of the department of medicine at the University of California, San Francisco. Other signatories include Akiko Iwasaki, Ziyad Al-Aly, Ed Yong, Eric Topol, Anthony Komaroff, David Putrino, Resia Pretorius, Michael Peluso, and many principal investigators of the National Institute of Health’s RECOVER initiative.
Also signed onto the letter are over twenty health advocacy and disability organizations, including Center for Economic and Policy Research, Long COVID Justice, LONG Covid Families, BIPOC Equity Agency, Black COVID-19 Survivors Alliance, Inc., The Black Long Covid Experience, Disability Rights California, COVID-19 Longhauler Advocacy Project, Dysautonomia International, #MEAction, and Patient-Led Research Collaborative.
I watched most of it, skipping through bits. It's based around Dr Asad Khan's experiences with Long Covid and interviews with Resia Pretorius and doctors and patients involved in apheresis treatment. Khan communicates well, though I fundamentally disagree with his final statement about treatments should be offered without waiting for research.
rvallee
Senior Member (Voting Rights)
The article has been translated in English, with the title "There Is Money in Prevention", and I can view it without a paywall.
https://www.manager-magazin.de/harv...ention-a-54022db9-428f-41d7-b71c-3f9befa58b0e
The article has a table with estimated costs. There is an estimate of 322M Euros in rehabilitation costs, from a "Long Covid: Costs for the German economy and health care and pension system", BMC Health Services Research, June 2023 paper. Up to whenever that study stopped counting, and ongoing.
If true this is scandalous waste of resources. Those rehabilitation costs are completely wasted, would do 1000x more spent on research. It would genuinely do more good to embezzle this money and spent it on yachts, then sink those yachts with explosives for tiktok views.
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