Esther12
Senior Member (Voting Rights)
There are different meanings to 'accept'. I think most Long-haulers do accept that it's likely true that 2021 will bring them continuing challenges, but that doesn't mean they're sanguine about it.
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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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There are different meanings to 'accept'. I think most Long-haulers do accept that it's likely true that 2021 will bring them continuing challenges, but that doesn't mean they're sanguine about it.
rvallee
Senior Member (Voting Rights)
Is it improvement when we are referred as "a thing" that used to exist, as opposed to something that doesn't exist?
Honestly I'm not even sure whether it is. Sure, it's insulting to reduce millions of people suffering enormously, and needlessly, as "a thing" that used to happen. But it sure beats being dismissed as a nothing that doesn't exist.
Frustratingly, it's impossible to communicate anything like this in a series of tweets. But, hey, we're "a thing".
Honestly I'm not even sure whether it is. Sure, it's insulting to reduce millions of people suffering enormously, and needlessly, as "a thing" that used to happen. But it sure beats being dismissed as a nothing that doesn't exist.
Frustratingly, it's impossible to communicate anything like this in a series of tweets. But, hey, we're "a thing".
Kalliope
Senior Member (Voting Rights)
Los Angeles Times 'Long haul' COVID-19 sufferers take a page from AIDS/HIV activism to be heard
Quotes:
Today, the Body Politic COVID-19 Support Group has registered 10,500 COVID-19 patients and their caregivers and families, who have started an independent research group and advised the National Institutes of Health. It is among dozens of grass-roots organizations around the world that have formed to make sure that a year into the pandemic — as fatigue mounts, vaccines become more available and infection rates drop — COVID-19 and its lingering symptoms remain in the public eye. Mindful of the battles that HIV/AIDS activists have fought over the years, its members know that their greatest enemies are fear, ignorance and apathy.
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While little is known about long COVID, researchers believe it is related to similar and equally puzzling syndromes — such as mast cell activation syndrome and dysautonomia — that occur following a severe viral infection. Symptoms arise from the body’s inability to regulate metabolism.
Because public awareness and federal research of these syndromes is small, advocacy groups have played a role in raising their profile. They are now finding common cause with long COVID.
The Long COVID Alliance, for instance, was co-founded by the organization Solve M.E., which for 30 years has lobbied for research and funding into chronic fatigue syndrome, which can follow a COVID-19 infection.
As more organizations focus on long COVID, a common agenda has emerged: clinical education, so healthcare providers are informed of symptoms; an expansion of disability benefits, so those with the disease can be supported in their recovery; and a revision of the disease classification code, so insurers can reimburse physicians and patients for treatment.
Quotes:
Today, the Body Politic COVID-19 Support Group has registered 10,500 COVID-19 patients and their caregivers and families, who have started an independent research group and advised the National Institutes of Health. It is among dozens of grass-roots organizations around the world that have formed to make sure that a year into the pandemic — as fatigue mounts, vaccines become more available and infection rates drop — COVID-19 and its lingering symptoms remain in the public eye. Mindful of the battles that HIV/AIDS activists have fought over the years, its members know that their greatest enemies are fear, ignorance and apathy.
...
While little is known about long COVID, researchers believe it is related to similar and equally puzzling syndromes — such as mast cell activation syndrome and dysautonomia — that occur following a severe viral infection. Symptoms arise from the body’s inability to regulate metabolism.
Because public awareness and federal research of these syndromes is small, advocacy groups have played a role in raising their profile. They are now finding common cause with long COVID.
The Long COVID Alliance, for instance, was co-founded by the organization Solve M.E., which for 30 years has lobbied for research and funding into chronic fatigue syndrome, which can follow a COVID-19 infection.
As more organizations focus on long COVID, a common agenda has emerged: clinical education, so healthcare providers are informed of symptoms; an expansion of disability benefits, so those with the disease can be supported in their recovery; and a revision of the disease classification code, so insurers can reimburse physicians and patients for treatment.
MeSci
Senior Member (Voting Rights)
Inside a long Covid clinic: 'I want to play with my kids again'
By Jim Reed
Health Reporter
Zaz Hassan survived Covid but, one year on, is still living with the after-effects of the virus.
"You live with the hope that you will get better," Zaz tells me, as he takes a break from his physio class at Croydon University Hospital's long Covid centre.
"For me, the end point would be to get back to work and just play with my kids. It may take time but people are recovering, so there is still the hope that I can come out of this."
The paediatric doctor, 42, has been off work since March 2020, when he fell ill with Covid-19, at the peak of the first wave. And like many other patients, his recovery has been far from straightforward.
More at link:
Inside a long Covid clinic: 'I want to play with my kids again' - BBC News
By Jim Reed
Health Reporter
Zaz Hassan survived Covid but, one year on, is still living with the after-effects of the virus.
"You live with the hope that you will get better," Zaz tells me, as he takes a break from his physio class at Croydon University Hospital's long Covid centre.
"For me, the end point would be to get back to work and just play with my kids. It may take time but people are recovering, so there is still the hope that I can come out of this."
The paediatric doctor, 42, has been off work since March 2020, when he fell ill with Covid-19, at the peak of the first wave. And like many other patients, his recovery has been far from straightforward.
More at link:
Inside a long Covid clinic: 'I want to play with my kids again' - BBC News
rvallee
Senior Member (Voting Rights)
We seem to have gathered some very good allies. And all it took is the most disruptive event in human history.
Advance written testimony (haven't looked myself yet): https://energycommerce.house.gov/si...Witness Testimony_McCorkell_HE_2021.04.28.pdf.
Dolphin
Senior Member (Voting Rights)
An Irish TV show. I'm not sure whether people in other countries can watch it or not.
https://www.virginmediatelevision.ie/player/show/1294/184369/0/The-Tonight-Show
Here is how one person described it:
https://www.virginmediatelevision.ie/player/show/1294/184369/0/The-Tonight-Show
Here is how one person described it:
MEP Maria Walsh talking about Long Covid (22 min in) and Dr Jack Lambert, talking about lack of support for post-infectious illnesses, including Lyme disease. (Trigger warning - she talks a lot about fatigueand pushing through
which (for anyone new to this) will unfortunately likely make things worse and turn a mild case of post-viral fatigue into a more severe case of ME/CFS)).
Kalliope
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
Evidence for biological age acceleration and telomere shortening in Covid-19 survivors
Pre-print: https://www.medrxiv.org/content/10.1101/2021.04.23.21255973v1
Appears to mirror prior findings in ME, that I don't think have been looked at since.
In this study, a cohort of 117 COVID19 survivors (post-COVID19) and 144 non-infected volunteers (COVID19-free) were analyzed using pyrosequencing of defined CpG islands previously identified as suitable for biological age determination. Besides, telomere length (TL) and ACE2 and DPP4 receptor expression were determined. The results show a consistent biological age increase in the post-covid population (mean 58,44 DS 14,66 ChronoAge Vs. mean 67,18 DS 10,86 BioAge, P<0,0001), determining a DeltaAge acceleration of 10,45 DS 7,29 years (+5.25 years above range of normality) compared to 3,68 DS 8,17 years for the COVID19-free population (P<0,0001). A significant telomere shortening parallels this finding in the post-COVID19 cohort compared to COVID19-free subjects (post-COVID19 TL: 3,03 DS 2,39 Kb vs. COVID19-free: 10,67 DS 11,69 Kb; P<0,0001). Additionally, ACE2 expression was decreased in post-COVID19 patients compare to COVID19-free, while DPP-4 did not change.
Pre-print: https://www.medrxiv.org/content/10.1101/2021.04.23.21255973v1
Appears to mirror prior findings in ME, that I don't think have been looked at since.
Dolphin
Senior Member (Voting Rights)
Esther12
Senior Member (Voting Rights)
I don't know about the details, and we certainly shouldn't write off a whole area of research, but that reminded me of this old Coyne blog that encouraged scepticism about a lot of the older research around telomeres: https://sciencebasedmedicine.org/sk...e-scientific-and-pseudoscientific-literature/
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rvallee
Senior Member (Voting Rights)
Some of the comments I have seen from Collins are very disingenuous. I don't know how much of this is the need to play politics because of widespread hostility that could bring him trouble if he dared go against a culture that harbors too much genuine contempt for us, and how much is just trying to spin the fact that the NIH completely failed at doing anything here and he's just trying to make it sound not as horrible as it really is.
Maybe we just are that hated and there really is nothing more he could have done without risking his tenure as NIH director, and his reputation as a result. I don't know how much it would be to ask of him to just come out and say so, rather than continuing to play politician.
But the simple truth is that the NIH failed and Collins is insulting is by pretending they put anything more than a token effort going nowhere. They did nothing significant and it's clear that without Covid the entire thing would have fizzled out with nothing to show for it. And that doesn't bring much hope, because to learn from mistakes it is necessary to acknowledge them. And as failures go, this one goes all the way to 11. Sometimes he says the right things but there is never any action backing those words.
Maybe it's possible that had he done anything more he would have face some rebellion ending his tenure. If that's so then frankly medicine is even more broken than it seems and that's just a whole different set of systemic failure. But it sounds too much like a politician spinning failure into the illusion of "we tried, we really tried", when actually they laughed it all off privately and never intended to do anything than is legally required. As all evidence points towards.
But none of it is inspiring moving forward. I want politics out of medical matters and it's clear we are not anywhere close to that yet. This makes trust moving forward impossible, it will be necessary to hold them accountable down to every damn comma and word because medical institutions simply cannot be trusted to do the right thing without being instructed at every step.
Maybe we just are that hated and there really is nothing more he could have done without risking his tenure as NIH director, and his reputation as a result. I don't know how much it would be to ask of him to just come out and say so, rather than continuing to play politician.
But the simple truth is that the NIH failed and Collins is insulting is by pretending they put anything more than a token effort going nowhere. They did nothing significant and it's clear that without Covid the entire thing would have fizzled out with nothing to show for it. And that doesn't bring much hope, because to learn from mistakes it is necessary to acknowledge them. And as failures go, this one goes all the way to 11. Sometimes he says the right things but there is never any action backing those words.
Maybe it's possible that had he done anything more he would have face some rebellion ending his tenure. If that's so then frankly medicine is even more broken than it seems and that's just a whole different set of systemic failure. But it sounds too much like a politician spinning failure into the illusion of "we tried, we really tried", when actually they laughed it all off privately and never intended to do anything than is legally required. As all evidence points towards.
But none of it is inspiring moving forward. I want politics out of medical matters and it's clear we are not anywhere close to that yet. This makes trust moving forward impossible, it will be necessary to hold them accountable down to every damn comma and word because medical institutions simply cannot be trusted to do the right thing without being instructed at every step.
Kalliope
Senior Member (Voting Rights)
I get the impression that his understanding of the nature of ME is minimal. During the hearing today when he talked about ME, he said patients could be almost bedbound for months. There was also a CDC doctor, whose name I've forgotten, who seemed to believe ME is mainly about fatigue. PEM was mentioned by others in relation to Long Covid, not ME.
Kalliope
Senior Member (Voting Rights)
Science Media Centre New Zealand Long COVID in New Zealand - Expert Q&A
Interviews dr. Anna Brooks, cellular immunologist and Emeritus professor Warren Tate, biochemist, molecular biologist and ME/CFS expert.
Quote:
“In my longstanding (more than 30 years’) experience with ME/CFS, while New Zealand has some very knowledgeable clinicians, generally the understanding of the disease in the health system has been poor. Many patients report feeling their long-term disease has never been affirmed as ‘real’ by their health practitioners.
“In contrast, there has been wide publicity and attention given to long COVID internationally, which may mean better recognition, although there is still much debate and research gaps about the various categories of long COVID.
“In New Zealand, long COVID patients are needing to access a healthcare system that has not served ME/CFS patients well. I hope the greater international focus on long COVID means there will be more understanding given to New Zealand patients with long COVID, and that this will also extend to ME/CFS patients.”
Interviews dr. Anna Brooks, cellular immunologist and Emeritus professor Warren Tate, biochemist, molecular biologist and ME/CFS expert.
Quote:
“In my longstanding (more than 30 years’) experience with ME/CFS, while New Zealand has some very knowledgeable clinicians, generally the understanding of the disease in the health system has been poor. Many patients report feeling their long-term disease has never been affirmed as ‘real’ by their health practitioners.
“In contrast, there has been wide publicity and attention given to long COVID internationally, which may mean better recognition, although there is still much debate and research gaps about the various categories of long COVID.
“In New Zealand, long COVID patients are needing to access a healthcare system that has not served ME/CFS patients well. I hope the greater international focus on long COVID means there will be more understanding given to New Zealand patients with long COVID, and that this will also extend to ME/CFS patients.”
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