The ME community should make an effort to point out that while other people might experience some of the same symptoms during a viral infection, those people need to imagine how it feels at its worst and knowing that it doesn't go away! It's not just a bad day, or even a bad weekend; it's that "I just want to stay in bed until it goes away" feeling day after day after day, with no hope that it's going to end any time soon. That endless hopelessness is a real psychological burden we carry.
Is a formal campaign against Long Covid underway?
- Thread starter Diwi9
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The ME community should make an effort to point out that while other people might experience some of the same symptoms during a viral infection, those people need to imagine how it feels at its worst and knowing that it doesn't go away! It's not just a bad day, or even a bad weekend; it's that "I just want to stay in bed until it goes away" feeling day after day after day, with no hope that it's going to end any time soon. That endless hopelessness is a real psychological burden we carry.
Rufous McKinney
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It seems we are having considerable trouble with news reporting in the US. We actually need something called more Neutral News.
At this point, finding the real news is a game...it can be fun to discover. In some ways, the regular public is now experiencing the siphoning and filtering of information that the ME/CFS world has experienced for decades. How does one even define and validate an "expert" these days? We are more prepared to tug at the loose threads. There are no-names online that I'd easily trust before some credentialed folk with publication.
David Tuller to the rescue on the WSJ opinion piece:
https://www.virology.ws/2021/03/25/...orses-pace-as-the-prevailing-view-among-docs/
https://www.virology.ws/2021/03/25/...orses-pace-as-the-prevailing-view-among-docs/
YippeeKi YOW !!
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Dammmmnnnnnn ....
I apologize up front for this, but I predicted that that would be the response from the medical community once the knee-jerk COVID PC wore off, and if I can remember the title of the thread(s), I'll def come back and post links here, cause it's one thing to claim it, and another entirely to prove it.
But it was the logical response from the same jolly bunch who brought so many of us the multiple variations of " ... it's all in your head ...." that more than a few members here have endured, and still do.
I'll never understand this response, beyond the automatic, knee-jerk reaction to anything that Drs dont immediately understand in terms of a quick Rx and "... next please...". They take it as a personal affront, so of course, it cant be real, because if it was, they'd absolutely know all about how to deal with and treat it.
I can't express how sorry I am that I was right. And I rarely say that. But some things don't change, and as long as Drs are " ...taught to the test ..." as it were, that's the way it's gonna stay.
In the long run, we're all our own practitioners and lab rats ...
BrightCandle
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I watched its a sin (Netflix) a few days ago. It is 5 part series about the outbreak of HIV/AIDs outbreak in the 80s. A fictional take but netherless grounded in the reality of that pandemic. It is quite good all be it an emotionally moving mini series.
One thing that struck me about it that really hit me was the dismissive nature from doctors, their complete lack of interest in even looking into the condition and treating those with it as deserving deviants. Some of the isolation they put them through despite how it was transmitted was borderline criminal, they were not treated with the compassion you ought to expect of a human beings dying from a horrible condition. That attitude delayed the response to the condition and killed people.
ME/CFS has been undergoing that same process for decades and because we don't die rapidly from it only a few researchers have really taken up the banner to look into the what of the disease. In the meantime the majority of doctors and researchers are continuing with prejudice. Long covid might just be big enough to turn the majority around, I fear it might not be given what we saw on the medicine sub reddit the other week.
One thing that struck me about it that really hit me was the dismissive nature from doctors, their complete lack of interest in even looking into the condition and treating those with it as deserving deviants. Some of the isolation they put them through despite how it was transmitted was borderline criminal, they were not treated with the compassion you ought to expect of a human beings dying from a horrible condition. That attitude delayed the response to the condition and killed people.
ME/CFS has been undergoing that same process for decades and because we don't die rapidly from it only a few researchers have really taken up the banner to look into the what of the disease. In the meantime the majority of doctors and researchers are continuing with prejudice. Long covid might just be big enough to turn the majority around, I fear it might not be given what we saw on the medicine sub reddit the other week.
bensmith
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Yeah its not even close to big enough. Have to be like 50 percent of children long haul at least imop. If its not a threat and we cant protest we are fucked. Imop.
YippeeKi YOW !!
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To Drs, and sadly many other people, "deserving deviant" is the prime oxymoron .... sad, especially when it not only affects someone's QOL, but their actual life itself ....
nerd
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I'm so annoyed by this attitude. That we are supposed to be accepting and thankful because we still live and keep breathing. What value does life have if you can't live it? Medicine is so fixated on increasing lifespan instead of healthspan. This is the reason why western medicine systems are overburdened despite the huge amounts of money they receive. Old people are kept living by all means even if they suffer. This is where the majority of our money goes. In Germany, euthanasia isn't even legal. So you have to keep on suffering as someone who has lived their life already. If they focused on healthspan, the overburden of the medical system would naturally decline. But then, you have to focus on prevention, and on health lifestyle, on chronic conditions in their earliest forms. Just like with COVID-19, you have to test and diagnose anyone.
But here, our medical folks again have their counterargument. The average human supposedly isn't capable of talking about their health without falling into hysteria, like the stigma of old-school housewives. Even thinking about the possibility of disease makes the disease real. The solution is to ignore the problems until they can't be ignored anymore and the chronic disease is manifested regardless, so you have to talk about it regardless. Everyone eventually gets a disease if they don't have a sudden accident. So why not change our culture to be open-minded to the idea that we don't have to be in control because we are never in control, not even over our own bodies. With such a mindset, hysteria about one's own health wouldn't exist even a little.
But the idea of control is a key element for marketing. And marketing has a meaningful use in our society, doesn't it? How else would we know that XY smartphones are the best because they are the most expensive? Marketing just feeds the idea of buying things to boost the illusion of control, while the earth's resources are sacrificed for it. Originally, people bought things not to compensate for their ego, but because they actually noticed on their own that they are missing something.
And doctors seem to be completely into this idea of illusion of control. Because it gives them purpose to be in control over lives and when people don't have any other option. And when such questions come up, when a disease is in question where they don't remember anything because it wasn't written in their study material 30 years ago, I wonder who is more afraid. Is the patient afraid of a diagnose and therapy option that ultimately explains and fixes all the symptoms they are already going through? Or is the doctor afraid because this one time, they don't have the answers and they are not in control over a life as they are used to? So who is experiencing the hysteria - the doctor or the patient?
Rufous McKinney
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We spend tremendous sums at the tail end of a life, keeping bodies going and the fear of death-a coworker gets triple bypass at 87, dies on the table.
My mother's final bill was over $800K. Her entire lifetime productivity- never achieved any $800K.
I think there is a whole smorgas board of issues going on that lead to the experience we seem to keep having.
I went to school with Pre Med students. Of the students I met, I would NEVER give my body over to a single one of them. Maybe one of them, but not the other 24. Whats motivating those people? Ego and Greed and status.
Now doctors have personality types, too. My current Primary is wonderful. He has all the traits typically lacking. Openness. Empathy. He listens. He knows about ME. He knew about Stanford. He is creative. I think this is not at all typical of most Med Doctors.
I get a 45 minute appointments. We actually talk about symptoms and explore ideas. WOW.
Now the other doctor, across the parking lot? I saw for 20 years? Never saw the actual doctor, I understand I could have scheduled a physical...4 month waits. Then, I'd get to see this real doctor for- 15 minutes. so I never bothered. My husband saw him twice, 5 minutes.
You can solve a person's chronic health condition in 5 minutes NO.
So none of that works.
The people campaigning for "We must do everything possible to extend each life as long as possible." aren't spending their money, they're spending other people's money and probably siphoning off some of that for themselves.
The one guy we were friends with in college who was going to go to Med School was also the LAST person I would want to go to as a doctor. Hopefully he changed? But no, seriously, no matter if he changed he was not someone that would even consider going the extra mile. Not the brightest, not the kindest and really just kind of a jerk.
Another guy who lived in our dorm had a brother who was interning in medicine. This guy was so creepy that he brought his even creepier brother into the examining rooms on his OBGYN rotation pretending that the brother was a student doctor so they could look at the women.
These two doctors are now probably getting close to retirement age but to think that they are what have passed for doctors is just a frightening thought.
nerd
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The people campaigning for "We must do everything possible to extend each life as long as possible." aren't spending their money, they're spending other people's money and probably siphoning off some of that for themselves.
Well, there are researchers who see aging as a disease and these are different. They are trying to fix healthspan and lifespan altogether. They don't advertise for expensive medicine but for how diet, supplementation, and lifestyle can improve healthspan and lifespan. They do genetic research and achieved really marvelous outcomes. But genetic research is highly restricted. So I guess we'll never see it in humans because of medical ethics. It's ridiculous how they prevent any genetic intervention in new life that could create a new generation of humans who are immune to many serious pathogens, autoimmune diseases, etc. Because there is a little chance that one of these people would later demand to get their ill genes back.
I'd understand it if it was for religious reasons. Nevertheless, they are still ignoring that evolution doesn't work anymore in a society like ours. Even creationists will have to admit that evolution changed people after the creation and this is just how nature works. Nature doesn't work anymore. People with weak genes reproduce and cause more suffering in their children, intended or not. This could be prevented.
I envy you. Even private doctors in Germany aren't more invested in CFS/ME patients or solving difficult problems. They're just trying to sell their special therapies.
I'm not sure how enrollment requirements are in Britain or the US, but in my state, you only have a chance with the best marks possible (A+). From my personal experience, such persons are in one of two groups. Either they're very talented social loners, not necessarily the extrovert-empathic type. Or they are narcissistic predators who are willing to make any sacrifice if it serves their goals. Neither of these two groups fit how I'd expect the stereotype of a personal physician to be. The first group is talented and should go into medical research. The second group shouldn't study but get therapy. Narcissists should not be allowed to be in control over other people and their lives.
So I'm not surprised that the only good doctors I've met in Germany migrated from other European countries. Or they were women.
Medical education really needs a thorough reformation. In a famous university in my state, they did an anonymous survey asking the students if they take illegal drugs during the exam preparation (Methylphenidate, etc.). By far, it was most common among medical students. How else are you supposed to remember all the useless things for the exam? This is completely useless in a digitalized world where information can be stored far more efficiently on microchips. The human brain is made to process information and not to store it for recitation.
Rufous McKinney
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ummm well I got Biology Degrees. Hence in classes with some pre med majors.
There is alot of memorization, but its necessary to exercise the brain and develop the ...ability to do the more complex activities. Eventually, alot less memorizing is necessary.
So I got plenty of A +s...without taking any "illegal drugs".
The big issue the Pre Med one's had was- they couldn't seem to write three sentences that made sense. The ability to write and analyze and critical thinking and all that...is critical to later success in sciences.
I think it's worthwhile for future doctors to learn and remember things. You can start to put two and two together and to that critical thinking that Rufous mentions if you have a good solid based of information in your own head. Makes it easier to know what to look for digitally.
Rebeccare
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This article appeared in the Wall Street Journal today. I don't think it will undo all of the damage of the original article, but it's a start.
https://www.wsj.com/articles/the-sc...id-and-the-desire-to-wish-it-away-11617143543
https://www.wsj.com/articles/the-sc...id-and-the-desire-to-wish-it-away-11617143543
wabi-sabi
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@Rebeccare Thanks for posting that. I just took a look at the part that's not behind a paywall and it seems to be a good rebuttal to the previously posted nonsense.
I would strongly suspect that long COVID suffers will be/are subjected to the same sort of psychosomatic nonsense that we are. We should make common cause and support each other.
I would strongly suspect that long COVID suffers will be/are subjected to the same sort of psychosomatic nonsense that we are. We should make common cause and support each other.
"Naysayers often point to the lack of proof that many long-Covid patients were originally infected with Covid-19. But Covid tests were extremely limited at the beginning of the pandemic, and these tests capture only a fraction of true cases."
This is what I was saying before. I don't see how some of the symptoms of CFS and Long Covid could even be distinguished, and this will further cloud the issue. In the end, enough traditional CFS people will get mixed in with Long Covid (and maybe they have the same general etiology), and this will allow the medical establishment to dismiss it in the end.
This is what I was saying before. I don't see how some of the symptoms of CFS and Long Covid could even be distinguished, and this will further cloud the issue. In the end, enough traditional CFS people will get mixed in with Long Covid (and maybe they have the same general etiology), and this will allow the medical establishment to dismiss it in the end.
Abrin
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As a funny side note, I have friends in Hamilton Ontario and I asked them if they ever randomly run into Jeremy Devine, resident psychiatrist at McMaster University to tell him to 'get bent' for me.
Rebeccare
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I have friends in Hamilton Ontario and I asked them if they ever randomly run into Jeremy Devine, resident psychiatrist at McMaster University to tell him to 'get bent' for me.
I was thinking about this, myself! My father grew up a short walk from the McMaster hospital, and my grandmother still lives in a nursing home in Hamilton. I don't think she's up for haranguing doctors-in-training, though (even if they do deserve it)