Dolphin
Senior Member (Voting Rights)
I can’t remember all the details of the Jerome Bourne (sp??) article but skimming down it, it looks very similar, with nothing new?
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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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rvallee
Senior Member (Voting Rights)
The saddest part is that this was all predictable. If someone like me, so brain-fogged I have to take days to fill in a simple questionnaire, could see this clearly, that a multi-trillion dollar industry with tens of millions of expertly-trained workers completely missed it is simply absurd and a catastrophic failure of that field of expertise.
Not to point out "I was right" because frankly many people were right and it wasn't that hard to see this happening. But this was so entirely predictable. In April 2020:
rvallee
Senior Member (Voting Rights)
Anyone except the maligned chronic illness community, of course. But we don't count. Literally we don't even count, people are shocked at the possibility that this could go on and on and still they don't count the people who have already been living this way.
I will point this out at every opportunity, that we saw it, warned about it, and still people don't pay attention to that. Which explains everything, frankly. Dismissing people who were right long in advance and continuing to listen to the very people who got it wrong is a time-tested guaranteed method for failure.
rvallee
Senior Member (Voting Rights)
This is one of the main consequences of keeping LC and ME separate. There are pros and cons but the cons so far will have wasted the first year and appear on track to go past this. It's impossible to take PEM into account while keeping ME locked away. It seems to be more important to keep us out of the way.
Repeating the same mistakes. False hope has consequences. If medicine were any rational this could be handled properly but we know how the system works, that nobody reads the fine prints and exercise is just the magical cure to everything, especially deconditioning, whether there is deconditioning or not. But of course since some with LC don't have PEM and would be on track to recover naturally anyway, a minority of anecdotes will be overplayed. We know this formula.
Diana is the leader of the Survivor Corps, the most visible long hauler in the US so far, and Peloton is an exercise bike manufacturer. And of course, Mayo is mayo, horrible with chronic illness.
Gonna need to palm-massage that forehead a lot today. I didn't expect much but frankly the failure is even worse than the worst case I expected. The first 6 months? Fine. But by now...
Repeating the same mistakes. False hope has consequences. If medicine were any rational this could be handled properly but we know how the system works, that nobody reads the fine prints and exercise is just the magical cure to everything, especially deconditioning, whether there is deconditioning or not. But of course since some with LC don't have PEM and would be on track to recover naturally anyway, a minority of anecdotes will be overplayed. We know this formula.
Diana is the leader of the Survivor Corps, the most visible long hauler in the US so far, and Peloton is an exercise bike manufacturer. And of course, Mayo is mayo, horrible with chronic illness.
Gonna need to palm-massage that forehead a lot today. I didn't expect much but frankly the failure is even worse than the worst case I expected. The first 6 months? Fine. But by now...
Andy
Retired committee member
This is one of the main consequences of keeping LC and ME separate. There are pros and cons but the cons so far will have wasted the first year and appear on track to go past this. It's impossible to take PEM into account while keeping ME locked away. It seems to be more important to keep us out of the way.
Repeating the same mistakes. False hope has consequences. If medicine were any rational this could be handled properly but we know how the system works, that nobody reads the fine prints and exercise is just the magical cure to everything, especially deconditioning, whether there is deconditioning or not. But of course since some with LC don't have PEM and would be on track to recover naturally anyway, a minority of anecdotes will be overplayed. We know this formula.
Diana is the leader of the Survivor Corps, the most visible long hauler in the US so far, and Peloton is an exercise bike manufacturer. And of course, Mayo is mayo, horrible with chronic illness.
Gonna need to palm-massage that forehead a lot today. I didn't expect much but frankly the failure is even worse than the worst case I expected. The first 6 months? Fine. But by now...
Thankfully people are weighing in with the concerns already.
Code:
https://twitter.com/fi_lowenstein/status/1351224297050808324?s=20
leokitten
Senior Member (Voting Rights)
For the subset who didn’t recover from PVFS and it got relabeled as ME/CFS (us) I always worried that I missed an important window of opportunity during the first year or so where some kind of intervention might’ve worked that won’t work now or where researchers might’ve seen more clearly what is happening to me that led to this. So yes 2020 was wasted time for long COVID!
leokitten
Senior Member (Voting Rights)
SCMP: Study finds 80 per cent of recovered Covid-19 patients in Hong Kong suffer from at least one lingering symptom, with gut bacteria playing critical role
Possible link between gut microbiome and long COVID?
Possible link between gut microbiome and long COVID?
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Dolphin
Senior Member (Voting Rights)
official press release:
https://www.cpr.cuhk.edu.hk/en/press_detail.php
I don't think it's available yet:
https://gut.bmj.com/content/early/recent
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Jonathan Edwards
Senior Member (Voting Rights)
I think this might be an advert:
One supplement the team had been developing specifically for “long Covid” patients had shown promising results, leading to faster recovery in some, Ng said.
I am not sure what it would mean for 40% of Chinese to have 'dysbiosis'.
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Kitty
Senior Member (Voting Rights)
From The Guardian:
Almost 30% of Covid patients in England readmitted to hospital after discharge – study [as yet unpublished]
'A total of 47,780 individuals who had a hospital episode between 1 January 2020 and 31 August 2020 with a primary diagnosis of Covid-19 were compared with a control group who did not have Covid-19.
Of the 47,780, 29.4% were readmitted within 140 days of discharge and 12.3% died.'
...
'The risk of post-discharge illness – such as respiratory conditions, diabetes and problems with the heart, liver and kidneys – in Covid-19 patients was higher compared with the control group...
...“This matters. Long Covid at this level of morbidity and new disease is absolutely as important as the number of people dying,” said Summers. ' [Dr. Charlotte Summers, Cambridge lecturer]
https://www.theguardian.com/society...re-admitted-to-hospital-after-discharge-study
Almost 30% of Covid patients in England readmitted to hospital after discharge – study [as yet unpublished]
'A total of 47,780 individuals who had a hospital episode between 1 January 2020 and 31 August 2020 with a primary diagnosis of Covid-19 were compared with a control group who did not have Covid-19.
Of the 47,780, 29.4% were readmitted within 140 days of discharge and 12.3% died.'
...
'The risk of post-discharge illness – such as respiratory conditions, diabetes and problems with the heart, liver and kidneys – in Covid-19 patients was higher compared with the control group...
...“This matters. Long Covid at this level of morbidity and new disease is absolutely as important as the number of people dying,” said Summers. ' [Dr. Charlotte Summers, Cambridge lecturer]
https://www.theguardian.com/society...re-admitted-to-hospital-after-discharge-study
leokitten
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
This looks to me confused. Do we know that these readmissions and deaths have anything to do with 'Long Covid'. There are a number of reasons why people bad enough to go into hospital with Covid might be readmitted last a high rate and die, including pre-existing poor health and organ damage (which is excluded from Long Covid was I understand it).
rvallee
Senior Member (Voting Rights)
This document was discussed earlier in the thread:
Possibility of ME or PVFS after COVID-19, Long Covid
Returning to physical activity after covid-19
https://www.bmj.com/content/372/bmj.m4721
GET, assumed to be deconditioning. Sensible caution about some co-morbidities but otherwise it's standard BPS fluff.
The date suggests this is recent but I remember an almost identical article from several months back. Don't know if it's a reprint of that.
Possibility of ME or PVFS after COVID-19, Long Covid
Returning to physical activity after covid-19
https://www.bmj.com/content/372/bmj.m4721
GET, assumed to be deconditioning. Sensible caution about some co-morbidities but otherwise it's standard BPS fluff.
Technically this should exclude long haulers but obviously symptoms that can't be measured don't count. It's framed about anxiety and distress:
As this should:
But then again the whole exercise for "chronic fatigue" was supposed to be for the mildly ill only and we all know all that went. The whole problem is being able to identify it.
The date suggests this is recent but I remember an almost identical article from several months back. Don't know if it's a reprint of that.
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leokitten
Senior Member (Voting Rights)
Wait maybe I haven’t been up to date on latest research, is there more evidence to suggest that it’s pathogens that can and do infect the gut that lead to PIFS and ME/CFS than whether they are intracellular? Or both?
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Without in any way downplaying the appalling tragedy and cost of Covid deaths, I remain firmly of the view that the tragedy and cost of Long Covid is going to be much worse. Something society is only just starting to even consider, let alone fully grasp.
It is also the reason why 'natural herd immunity' was always a shockingly bad idea.
Psychs: Hold my beer...
It is indeed traumatising and enraging and profoundly dispiriting. But on balance I would prefer this stuff was released unedited. The world needs to see the harsh reality of it, to be appalled, horrified, disgusted, and scared.
The best way to discredit somebody is with their own words. People with this kind of attitude need to be exposed and discredited.
We are way past the point where benefit of doubt on this stuff is a legitimate defence.
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Kitty
Senior Member (Voting Rights)
I meant to include a comment that it appeared to suggest that large numbers of people readmitted in a serious condition are being included in the Long Covid cohort...but I was over-tired, and forgot.
Having re-read the article this morning, it looks like two reports hashed together by a sub who hasn't really read either of them, so it's probably not worth trying to draw any conclusions from it!
Frankie
Established Member (Voting Rights)
If 1 in 10 of those who had Covid 19 have gone on to have Long Covid, and 12% of the population have had Covid 19, then that suggests an LC prevalence of 1.2% of the population? This is far higher than the c 0.1% prevalence for ME which Luis Nacul proposed, the lowest figure I have seen and the one I trust the most, given so much uncertainty.
There is no way of knowing yet how many of those suffering LC have organ damage which affects their recovery and how many are at the start of ME but would it be reasonable to give to those with LC that have ME symptoms an optimistic message? They have a good chance of recovery if they rest well and that any supplements or treatments that they try may help for a while but they will get better anyway.
But! please remember those of us who have not recovered from viral infections, of whatever sort. Remember what it was like to not be able to work, to be active and have fun, to be able to meet family responsibilities and to live a life of uncertainty, having to face living in poverty.
There is no way of knowing yet how many of those suffering LC have organ damage which affects their recovery and how many are at the start of ME but would it be reasonable to give to those with LC that have ME symptoms an optimistic message? They have a good chance of recovery if they rest well and that any supplements or treatments that they try may help for a while but they will get better anyway.
But! please remember those of us who have not recovered from viral infections, of whatever sort. Remember what it was like to not be able to work, to be active and have fun, to be able to meet family responsibilities and to live a life of uncertainty, having to face living in poverty.
Tom Kindlon
Senior Member (Voting Rights)
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