The inflamed brain—Science article 2024
- Thread starter Jaybee00
- Start date
“In 2017, Alina Sternberg, a psychiatrist, was hit with crushing fatigue and brain fog.Neurologists told her the symptoms were caused by depression."No, I can enjoy my life, and I know what depression is... I’m a psychiatrist!”It took 6 years to discover the culprit...”
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This is really worth a read and a debate on here because the part I hadn’t read before covers a fundamental question issue regarding the psychiatric categorisation vs proper medical checking of other causes , the strange discussion/paternalism regarding ‘hope’ that area seems to have as a ‘go to’ response
The study goes on to say they are doing a piece of research where they will screen 3000 patients across many psychiatric institutions for it now. And that actually no one really knows its prevalence! So what, just assume it’s ’rare’ even as a % of those presenting with said symptoms?
There’s a nice line of the the old days they might die on ICU or in mental wards or (they suggest rare cases but I’m not sure we can’t say the behavioural psychology of much of today isn’t really unrelated to this type of ideology) exorcism.
Then someone said doing things like that ‘gives false hope’ which to me shows an utter misunderstanding of human psychology and human assumption of medicine and healthcare - that you know someone will check you don’t have x,y,z before assuming. Particularly if said assumption means decades of rest of life and that itself as a bucket deserved to be cleaned up.
How can you be ‘as ok with that diagnosis as a dumping pot’ whilst left hanging with the ‘you never know’ even if it might be a small chance - for the patient it’s the whole of the one life they get so I question the thinking of someone not getting ‘peace of mind’ unless the test involves massive risk or harm (like putting an me/cfs thru a cpet or big operation) and even then it comes back to that issue of INFORMED consent. Which much of that area /those speaking in it seems to have some instinctive aversion to … the working on the informed part being about endeavoring to get as many facts right to provide the patient with knowing factually about their own body and choices rather than a focus on what - only bothering with seeking ‘evidence’ that backs up what the person in charge wants to say and with low quality of need be and then the most heinous part of it rewriting someone’s personality and history forever and removing who they are to stick on a narrative often in order to justify what comes to outsiders. I find that part the most egregious handing over of even someone’s pre-life for destruction and removal and rewriting by too many instead of ‘being interested’ as well as taking their voice and replacing it with these stories about them the most weird thing society gives permission for
I also get puzzled why or whether it’s money not being put into that ‘what is it’ process of certain depts or ‘culture’ when the cost of them being stuck instead forever having their life controlled, on a ward, and even if they did function ok there’s that issue where because of the system you have to ‘play the game’ to get out which doesn’t relate to ‘being normal for you’ so I’m not sure they really do know or spot someone improved illness-wise just ‘coerced snapshot behaviour wise’ eg ‘giving the right answers’ is never factored in as the alternative.
So I’m not sure that if we are honest in the past that has been the main factor (best outcome either at individual or population level) for anything that gets pulled under this broader area. And we should question why
And as a bigger thing is it not ‘mental health stigma’ but something like being very ok with consigning people who could have something ‘gotten to the bottom of’ to a life written off because certain symptoms either divert into pathways where ‘that’s what we do/our approach’ and their convincing/interacting with society over either whether those things count or are fixable or not-as we all get some feel is still there- have some old fashioned assumption of personal failing.
I’ve only been well enough to get a certain way thru partly scanning but please read anyone as it’s full of things that made me think
The study goes on to say they are doing a piece of research where they will screen 3000 patients across many psychiatric institutions for it now. And that actually no one really knows its prevalence! So what, just assume it’s ’rare’ even as a % of those presenting with said symptoms?
There’s a nice line of the the old days they might die on ICU or in mental wards or (they suggest rare cases but I’m not sure we can’t say the behavioural psychology of much of today isn’t really unrelated to this type of ideology) exorcism.
Then someone said doing things like that ‘gives false hope’ which to me shows an utter misunderstanding of human psychology and human assumption of medicine and healthcare - that you know someone will check you don’t have x,y,z before assuming. Particularly if said assumption means decades of rest of life and that itself as a bucket deserved to be cleaned up.
How can you be ‘as ok with that diagnosis as a dumping pot’ whilst left hanging with the ‘you never know’ even if it might be a small chance - for the patient it’s the whole of the one life they get so I question the thinking of someone not getting ‘peace of mind’ unless the test involves massive risk or harm (like putting an me/cfs thru a cpet or big operation) and even then it comes back to that issue of INFORMED consent. Which much of that area /those speaking in it seems to have some instinctive aversion to … the working on the informed part being about endeavoring to get as many facts right to provide the patient with knowing factually about their own body and choices rather than a focus on what - only bothering with seeking ‘evidence’ that backs up what the person in charge wants to say and with low quality of need be and then the most heinous part of it rewriting someone’s personality and history forever and removing who they are to stick on a narrative often in order to justify what comes to outsiders. I find that part the most egregious handing over of even someone’s pre-life for destruction and removal and rewriting by too many instead of ‘being interested’ as well as taking their voice and replacing it with these stories about them the most weird thing society gives permission for
I also get puzzled why or whether it’s money not being put into that ‘what is it’ process of certain depts or ‘culture’ when the cost of them being stuck instead forever having their life controlled, on a ward, and even if they did function ok there’s that issue where because of the system you have to ‘play the game’ to get out which doesn’t relate to ‘being normal for you’ so I’m not sure they really do know or spot someone improved illness-wise just ‘coerced snapshot behaviour wise’ eg ‘giving the right answers’ is never factored in as the alternative.
So I’m not sure that if we are honest in the past that has been the main factor (best outcome either at individual or population level) for anything that gets pulled under this broader area. And we should question why
And as a bigger thing is it not ‘mental health stigma’ but something like being very ok with consigning people who could have something ‘gotten to the bottom of’ to a life written off because certain symptoms either divert into pathways where ‘that’s what we do/our approach’ and their convincing/interacting with society over either whether those things count or are fixable or not-as we all get some feel is still there- have some old fashioned assumption of personal failing.
I’ve only been well enough to get a certain way thru partly scanning but please read anyone as it’s full of things that made me think
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Yann04
Senior Member (Voting Rights)
I wonder how different the brainscans of these autoimmune encephalitis diseases look to ME? I imagine quite different since they presumably have “classical” inflammation?
It’s remarkable how some of these descriptions in this article fit pretty much exactly the symptoms I feel during my worst “poisoned” “brain on fire” moments.
It’s remarkable how some of these descriptions in this article fit pretty much exactly the symptoms I feel during my worst “poisoned” “brain on fire” moments.
Jonathan Edwards
Senior Member (Voting Rights)
Very different.