rvallee
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6 months? If only.
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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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6 months? If only.
rvallee
Senior Member (Voting Rights)
COVID “Long-Haulers” and Post-Viral Syndrome: “We Have to Believe Our Patients”
https://dailynurse.com/covid-long-haulers-and-post-viral-syndrome-we-have-to-believe-our-patients/
The wooification of ME happened precisely by medicine being completely dismissive of what we reported. The same conditions exist today. Those conditions are systemic and taught with purpose. More than dismantling this insane ideology, medical staff will have to be retrained explicitly making the point that it was a catastrophic failure.
Anything else will fail the same way for the same reasons. Had it been possible to easily discriminate COVID-19 this would not be necessary. But it is. A complete paradigm shift is necessary, comparable in scope and size to the introduction of the germ theory of disease, which medicine still has not fully accepted with all its implications.
https://dailynurse.com/covid-long-haulers-and-post-viral-syndrome-we-have-to-believe-our-patients/
Again, that is only possible by reversing the decades of wooificiation of medicine from the BPS/MUS/FND ideology. Not a realistic proposition without doing the necessary hard work. As impossible as dealing with climate change without abandoning fossil fuels. It's not a nice-to-have, it's a necessity.
The wooification of ME happened precisely by medicine being completely dismissive of what we reported. The same conditions exist today. Those conditions are systemic and taught with purpose. More than dismantling this insane ideology, medical staff will have to be retrained explicitly making the point that it was a catastrophic failure.
Anything else will fail the same way for the same reasons. Had it been possible to easily discriminate COVID-19 this would not be necessary. But it is. A complete paradigm shift is necessary, comparable in scope and size to the introduction of the germ theory of disease, which medicine still has not fully accepted with all its implications.
rvallee
Senior Member (Voting Rights)
The wheels on the bus go thump thump thump...
Why we need to keep using the patient made term “Long Covid”
https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/
It's remarkable that as they make the exact same arguments the ME community made decades ago, and ongoing, they would be happy throwing us under the bus, not quite aware that this whole song-and-dance has been unfolding for decades. Yet there is no solving the newest issue without solving its underlying basis.
How many years have been wasted on those issues? On the names, on the definitions, on the criteria? All pointless without someone doing the work that will give the answers to those. Decades of wasted opportunity and this conversation could have happened as is well before the BPS sabotage. Or, well, had it happened decades ago none of this would have come to light and long Covid would have never even been identified, dismissed as yet another episode of mass hysteria. It's the sheer number and the ability to coordinate instantly that changes everything.
At the very least, I hope this puts to rest the complete nonsense of seeking illness labels and other absurdities like that. Of course a discriminated disease considered a non-disease by medicine is not something anyone would want anything to do with. This was always obvious, basic common sense, but one good thing from this throwing-under-the-bus shows is precisely how nonsensical this idea is.
Ironically, the words are rejected for reasons that all circle back to the issue they want to avoid. They are rejected as being inaccurate, making assumptions. They are rejected as being trivializing, and they are rejected as being easy to abuse with language to dismiss under various aspects of psychosomatic ideology, precisely because we have been abused by those words, a situation no one wants to find themselves into. They dismiss them for the same reasons we have.
Why we need to keep using the patient made term “Long Covid”
https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/
This is sensible, but naive of how medicine works and the history of this very issue. Those names were always arbitrary and rejected as inaccurate by the patient community. In the end all those names will change once the work ramps up and stupidity stops dominating the issue. But there is too much baggage tied to it.
It's remarkable that as they make the exact same arguments the ME community made decades ago, and ongoing, they would be happy throwing us under the bus, not quite aware that this whole song-and-dance has been unfolding for decades. Yet there is no solving the newest issue without solving its underlying basis.
How many years have been wasted on those issues? On the names, on the definitions, on the criteria? All pointless without someone doing the work that will give the answers to those. Decades of wasted opportunity and this conversation could have happened as is well before the BPS sabotage. Or, well, had it happened decades ago none of this would have come to light and long Covid would have never even been identified, dismissed as yet another episode of mass hysteria. It's the sheer number and the ability to coordinate instantly that changes everything.
At the very least, I hope this puts to rest the complete nonsense of seeking illness labels and other absurdities like that. Of course a discriminated disease considered a non-disease by medicine is not something anyone would want anything to do with. This was always obvious, basic common sense, but one good thing from this throwing-under-the-bus shows is precisely how nonsensical this idea is.
Ironically, the words are rejected for reasons that all circle back to the issue they want to avoid. They are rejected as being inaccurate, making assumptions. They are rejected as being trivializing, and they are rejected as being easy to abuse with language to dismiss under various aspects of psychosomatic ideology, precisely because we have been abused by those words, a situation no one wants to find themselves into. They dismiss them for the same reasons we have.
Dolphin
Senior Member (Voting Rights)
For those who don't follow the link, here are the authors. Some of them have already been discussed on this thread:
rvallee
Senior Member (Voting Rights)
Somehow I assume that if someone knew where to look we would find several very similar articles with those arguments about PVFS and/or ME going back decades. Just never published prominently by an outlet like BMJ but still.
I assume BMJ's hope in publishing this is to distance from their disastrous handling of ME. Sure would have been nice if the ME community had been allowed a voice when it would have mattered. But at least that's one advantage of this happening publicly, even as it repeats old mistakes: it leaves much less room for secretive power plays from MUS/BPS/FND ideologues.
rvallee
Senior Member (Voting Rights)
I don't have the brain power right now to make sense, especially in twitter condensed form. If anyone has the cognitive bandwidth to explain why leaving out decades of history by separating from it is not going to work out:
The article is framed explicitly to separate long Covid from PVFS/CFS. Very explicitly, and doesn't argue much else, only providing a brand new starting point. I understand the reasons and they are rational, ME/CFS/PVFS has been completely failed by medicine, in the worst possible way, but only without the context in which they exist.
If the point is that those terms are inappropriate, and they are, then the point should be made, not left unvoiced. But that's not the point. The point is we are too discriminated to associate with and, again, I perfectly understand the reasons and do not fault anyone, since they can't possibly have a good enough understanding of ME to know it is wrong. But this approach is like trying to put out massive wildfires while not only not taking into account but explicitly distancing from the impacts of climate change. There may be seemingly persuasive reasons to do that but it will fail.
Or treating a new type of cancer as wholly separate from other cancers. Probably more accurate. There are clear differences but far more similarities.
In truth, to make significant progress here requires not only working with the decades of context, but medicine basically has to solve the immune system and all its pathogenic consequences, especially symptoms. Medicine is currently completely unequipped for this. It requires a massive upheaval of decades of wooification that caused blatant rejection of the very possibility that pathogens can do what they do. This isn't anything that can be separated from.
Again, this would have been possible had COVID left an unmistakable trace in the body. It likely would have happened, actually. But unless and until this difference is found, we are in the same pit of hell, a place where separating people into rooms doesn't really change anything because the thermostat on the wall is fake and the temperature is the same everywhere.
The article is framed explicitly to separate long Covid from PVFS/CFS. Very explicitly, and doesn't argue much else, only providing a brand new starting point. I understand the reasons and they are rational, ME/CFS/PVFS has been completely failed by medicine, in the worst possible way, but only without the context in which they exist.
If the point is that those terms are inappropriate, and they are, then the point should be made, not left unvoiced. But that's not the point. The point is we are too discriminated to associate with and, again, I perfectly understand the reasons and do not fault anyone, since they can't possibly have a good enough understanding of ME to know it is wrong. But this approach is like trying to put out massive wildfires while not only not taking into account but explicitly distancing from the impacts of climate change. There may be seemingly persuasive reasons to do that but it will fail.
Or treating a new type of cancer as wholly separate from other cancers. Probably more accurate. There are clear differences but far more similarities.
In truth, to make significant progress here requires not only working with the decades of context, but medicine basically has to solve the immune system and all its pathogenic consequences, especially symptoms. Medicine is currently completely unequipped for this. It requires a massive upheaval of decades of wooification that caused blatant rejection of the very possibility that pathogens can do what they do. This isn't anything that can be separated from.
Again, this would have been possible had COVID left an unmistakable trace in the body. It likely would have happened, actually. But unless and until this difference is found, we are in the same pit of hell, a place where separating people into rooms doesn't really change anything because the thermostat on the wall is fake and the temperature is the same everywhere.
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Dolphin
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
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Tom Kindlon
Senior Member (Voting Rights)
I decided to write to them and ask could I share their original message which they have now agreed to:
Somebody sent me the following
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"The many tweets and posts about post-covid have made me wonder about something. Back in 1988, when I first heard about ME (and had already been having it for 2 years), ME was also sometimes referred to as Post Viral Syndrome. Likewise, doctors are now calling post-covid a postviral syndrome.
Most long-time patients are probably weary of changing the ME name yet again, but I wonder if it wouldn't strengthen our case, especially in the medical community, if we referred to our illness as PVS/ME from now on, and to post-covid as PVS/COVID19 (or PVS/SARS2), to emphasize that we're in much the same boat, and hopefully bend some of the attention that is being paid to post-covid towards post-viral syndromes in general."
--
They have now given me permission to share it without their name, adding:
"I don't know anything about the methodology of how the medical community assigns names to illnesses, but even if the idea should break with their conventions, I hope people will still consider if this could be beneficial to our plight as patients. Thanks!"
My comment: I wonder whether reversing the order, so it becomes ME/PVS, might be a bit more suitable as it is comparable to ME/CFS. And then similarly it would be COVID19/PVS
They gave me permission to re-phrase the idea, but I decided for this post, I would use their original wording
mango
Senior Member (Voting Rights)
A moving personal letter/article published in a Swedish medical journal, written by a MD PhD (plastic surgeon).
Läkartidningen: "Utkast till minnesord över en älskad hjärna"
https://lakartidningen.se/aktuellt/kultur-2/2020/09/utkast-till-minnesord-over-en-alskad-hjarna/
Google Translate, English ("Draft eulogy about a beloved brain")
Läkartidningen: "Utkast till minnesord över en älskad hjärna"
https://lakartidningen.se/aktuellt/kultur-2/2020/09/utkast-till-minnesord-over-en-alskad-hjarna/
Google Translate, English ("Draft eulogy about a beloved brain")
Clearly, CFS is unacceptable. Regardless, do we know definitively that even a majority of people diagnosed with ME/CFS are, in fact, post anything? Do we trust diagnostics, or their assorted protocols, across the board enough to accept a label which by definition states we are cleared of a given causative agent, ie., post viral?
Art Vandelay
Senior Member (Voting Rights)
Let me get this straight, doctors who obviously have some sort of post-viral condition are still finding ways to gaslight people with ME.
You couldn't make this up. You would think that being struck down with an unexplained illness would teach these people some humility and empathy.
According to Dr Alwan, those of us with ME are simply fatigued, whereas she and her post-covid buddies have a range of serious, unexplained symptoms that deserve full investigation. Those of us "up the back" should just shut up and accept zero medical investigations and GET and CBT.
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I think people need to be careful not to too harshly criticize people that have long covid, or that are talking about long covid. I think that the vast majority of them are well intentioned, and if people either politely raise points or correct things I think almost all of them will listen. But if they feel like people with ME are being combative, or unnecessarily pushy or harsh, it's likely they'll be more reluctant to engage with people with ME or the possible link between ME and Long Covid. This is just something people need to be careful about.
I think a major point about ME is that it takes a long time for a patient to figure things out. Its like its an alien experience, and it is alien to everyone's prior experience unless they knew someone with ME very very well. Its to be expected it will take time. Its also to be expected that many with long Covid have post viral fatigue and not ME, though they may develop ME later. There is also the issue that many problems are caused by clotting and scarring that is not common in ME, and so is often outside OUR experience.
James Morris-Lent
Senior Member (Voting Rights)
Speaking of lessons possibly not learned -
Is it just me or are people generally failing to see the lesson that 'Long Covid' is putting right in our faces, namely that this sort of thing can be expected to happen with any pandemic? And how great of an idea it would be to have a serious go at eradication so that every so many decades some appreciable portion of the population doesn't become disabled for some indefinite period? On top of all the other reasons.
Is it just me or are people generally failing to see the lesson that 'Long Covid' is putting right in our faces, namely that this sort of thing can be expected to happen with any pandemic? And how great of an idea it would be to have a serious go at eradication so that every so many decades some appreciable portion of the population doesn't become disabled for some indefinite period? On top of all the other reasons.
It's déjà vu all over again.
I was thinking that there may be a paper in this. PVS: Time for a new approach. I haven't yet worked out the details but the general idea would be that misguided folk have thought that aetiology is unimportant, and that it was instead necessary to look at predisposing, precipitating and perpetuating factors, with especial emphasis on the perpetuating. These would be biopsychcosocial in nature.
This is of course wrong. No epidemiologists could have come up with such an idea. What you need to look at is the pathogen, its spread and the variety of illnesses it may cause. Nothing is to be learned from illnesses with similar symptoms.
I don't think that title is taken...
Perhaps the most helpful response to tweets that dismiss ME as 'just fatigue' is to wish the person a full recovery, say we hope their long Covid doesn't develop into ME, and attach links to good quality materials about ME. It is then up to them whether they choose to educate themselves about ME.
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