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Long Covid in the media and social media 2023
- Thread starter rvallee
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Oh right so he thinks cognitive disfunction has never been seen before. Wow.
Brain Structure, Widespread Connectivity Changes Seen With Long COVID
https://www.medpagetoday.com/meetingcoverage/aan/103186
https://www.medpagetoday.com/meetingcoverage/aan/103186
Akiko Iwasaki interviewed on The Long Covid Sessions podcast (Feb 13). Interesting to hear that her initial interest in LC came via Ed Yong, and that then led to her ongoing collaboration with David Putrino, who had also been interviewed by Ed in April/May 2020.
She also discusses the importance of Twitter to her communication with patients and that she's stayed despite the recent management changes.
"I would be nowhere where I am now without that kind of direct patient engagement and learning from the patients." "I really - on a daily basis - am learning new things about what the patients are experiencing ..."
She also discusses the importance of Twitter to her communication with patients and that she's stayed despite the recent management changes.
"I would be nowhere where I am now without that kind of direct patient engagement and learning from the patients." "I really - on a daily basis - am learning new things about what the patients are experiencing ..."
Art Vandelay
Senior Member (Voting Rights)
An interesting statistic (see figure also):
These figures relate just to private health insurance (which most Australians do not have).
I'd be very interested to see figures on income insurance payouts for Long Covid.
I made a short submission to the current Australian parliament committee into Long Covid. Mostly just noting the parallels with ME, and asking them to learn from that experience and not make the same mistakes. Plus more masking, and indoor air filters (because few things at this stage could deliver more short and long-term value for LC than those two, via increased prevention).
What did you do, Prof?
What did you do, Prof?
Andy
Retired committee member
Always a good look, blaming chronically ill advocates for something that, as far as we know, he himself hasn't done himself.
Jonathan Edwards
Senior Member (Voting Rights)
I think that may just be James Coyne being unclear, as he often is.
One could well ask when is Coyne's profession – psychology – going find a spine and put the rogue psychosomatic cult within it, that is quite clearly the root cause of all this unnecessary trouble for ME and LC patients, on a very short stout leash?
How come the pros can't manage to deliver on their end of the deal? We have more than delivered on ours.
How come the pros can't manage to deliver on their end of the deal? We have more than delivered on ours.
Kalliope
Senior Member (Voting Rights)
The Conversation
We got some key things wrong about long COVID. Here are 5 things we've learned
quote:
In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.
These symptoms are responsible for much of the disease and disability associated with long COVID in many people and are often more prevalent than respiratory problems.
Severe cases of long COVID, ME/CFS and other post-infectious syndromes may include a condition known as POTS (postural orthostatic tachycardia syndrome), where an excessive heart rate results in falls in blood pressure with even mild exertion.
Unlike survivors of COVID pneumonia, people with POTS are much less likely to benefit from traditional exercise-based rehabilitation programmes. Such programs may even exacerbate their symptoms.
Instead, approaches are proposed that have been previously applied to ME/CFS and POTS are proposed, including exercise pacing, and medication regimes. However, there is a lack of good evidence, and while trials are underway, they are few, especially in Australia.
We got some key things wrong about long COVID. Here are 5 things we've learned
quote:
In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.
These symptoms are responsible for much of the disease and disability associated with long COVID in many people and are often more prevalent than respiratory problems.
Severe cases of long COVID, ME/CFS and other post-infectious syndromes may include a condition known as POTS (postural orthostatic tachycardia syndrome), where an excessive heart rate results in falls in blood pressure with even mild exertion.
Unlike survivors of COVID pneumonia, people with POTS are much less likely to benefit from traditional exercise-based rehabilitation programmes. Such programs may even exacerbate their symptoms.
Instead, approaches are proposed that have been previously applied to ME/CFS and POTS are proposed, including exercise pacing, and medication regimes. However, there is a lack of good evidence, and while trials are underway, they are few, especially in Australia.
Andy
Retired committee member
Author is Peter Wark, Conjoint Professor, School of Medicine and Public Health, University of Newcastle, AU.
Only scanned a comment above but this looks OK to me-
"[James Coyne] Where are the citizen scientists of the #MEcfs #pwME community when someone needs to explain the horrors of an invalid #medically unexplained symptoms” diagnosis, and how it discourages exploration of the physical causes of complex illnesses?"
I've tried to engage with the log covid community [emails and one comment/response to a post on social media] and had one response. Others, on this forum, seem to have been more successful, especially via social media, - well done.
I've suggested this forum to those advocating for long covid.
There are lots of exemplars, like Jonathan and others who worked to improve the NICE guideline - well done, so I'm not so much asking where are the ME/CFS advocates as --- were are the long covid advocates?
"[James Coyne] Where are the citizen scientists of the #MEcfs #pwME community when someone needs to explain the horrors of an invalid #medically unexplained symptoms” diagnosis, and how it discourages exploration of the physical causes of complex illnesses?"
I've tried to engage with the log covid community [emails and one comment/response to a post on social media] and had one response. Others, on this forum, seem to have been more successful, especially via social media, - well done.
I've suggested this forum to those advocating for long covid.
There are lots of exemplars, like Jonathan and others who worked to improve the NICE guideline - well done, so I'm not so much asking where are the ME/CFS advocates as --- were are the long covid advocates?
Andy
Retired committee member
Where do you think they should be?
I would imagine that, just like the ME community, the vast majority are trying to deal with the devastating effects of their condition, while the few who are able to engage in advocacy are trying to do what they can with the limited amount of energy available to them. Neither communities owe anybody anything, despite what you might think.
rvallee
Senior Member (Voting Rights)
Frankly, looking at what has happened with LC, we punched way above our weight. We even did a lot of debunking ourselves, it's just that it turns out that evidence is irrelevant in evidence-based medicine, and that, clearly, some patients are way less equal than others.
We lead the horse to the water. We showed it the water. We mimed drinking some of the water. We took water and splashed it on its mouth, then pointed at the water.
We literally cannot do more than this to get a stubborn horse to drink. So I guess we're dealing with something more like a mule, but that may not be fair to mules as they aren't that stubborn.
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