Brain cells

As I said, I am equally concerned about psychiatrists being involved, considering their past incompetence. I am not suggesting a heading. I am simply discussing the paradox raised by all the various bits of evidence we have at hand. Neurology seems to me as good a place as any for now but unlike channelopathies we do not have a mechanism to hang that on.
Fair, but ascribing channelopathies to neurology seems almost capricious. How did they pull that off? Some PP researchers like Tawil did have genetic references - as we also do now. If those researchers can stake a claim, maybe we should be doing the same.
 
A key part of the disability in schizophrenia relates to abnormal thoughts such as delusions and hallucinations, and also paranoia, which we do not see in ME/CFS.
Yes, I was referring only to the negative symptoms: lack of concentration and a somewhat simplified intellectual life. But one may argue, as a neurologist once told me, that these symptoms are nonspecific and could be present in any pathology of the brain.
 
"Pretty much all symptoms are brain mediated in the end". This is a statement that requires validation from the scientific community. If there is convergence from scientists on this one then we agree. Do we have convergence?
«Symptoms» are subjective, so they have to involve the brain because that’s where the me(s) that perceives is located. If it’s objectively measurable it’s called a sign.
Okay, very interesting.
But to understand and progress further towards understanding it, shouldn't we focus almost exclusively on the brains of severely ill patients?
Isn't the solution found in the most severely affected? Because it's clear that the disease is the same in moderate and severe cases.
For narcolepsy, for exemple, a loss of orexin in the hypothalamus was discovered through autopsies. Is it impossible to do the same for MECFS? This has been done recently, but it would need to be done on 100 brains of severely affected MECFS patients. Whether that's even feasible... I don't know. It's been done for Alzheimer's and narcolepsy... why not us?
It hasn’t been done more extensively for ME/CFS because it’s very expensive and requires investments over many years. I hope DecodeME and SequenceME will be the thing that gives people the push to get brainbanks set up. Perhaps the Germans could do it with their decade of funding.
 
«Symptoms» are subjective, so they have to involve the brain because that’s where the me(s) that perceives is located. If it’s objectively measurable it’s called a sign.

It hasn’t been done more extensively for ME/CFS because it’s very expensive and requires investments over many years. I hope DecodeME and SequenceME will be the thing that gives people the push to get brainbanks set up. Perhaps the Germans could do it with their decade of funding.
Wasn't it in the Netherlands that 10 brains were autopsied? Weren't there supposed to be more?
Actually, it seems to me that it's a priority. Autopsies of the brains of severely ill MECFS patients. Doing 50 to 100 seems essential.
The Germans are rushing towards autoimmunity research, the Americans with Polybio are receiving a lot of funding for viral persistence when they should be focusing on neuroscience and SequencEM.
We have Fluge and Mella who are already doing excellent work on Daratumumab. But Carmen Scheibenbogen doesn't seem to want to change her strategy...
 
I see ME/CFS as being a problem at a much lower level, like the satnav or the ABS system going out of synch
This is great analogy. I have a similar one. I think of ME/CFS like a car’s “limp mode” program. When relevant sensors are activated, indicating a certain category of problem, limp mode turns on. The car will still run and drive, but horsepower, speed, features are greatly limited to protect the car from damage like the engine overheating. So, it’s a rough cost/benefit compromise intended to get you home slowly, while protecting the vehicle from further damage.

In some cases, limp mode activates for some minor reason, like a bad sensor or broken wire, and the car would have actually been safe to drive at full speed. I think we are stuck in limp mode, likely due to an obscure, undiscovered, signal.
 
Wasn't it in the Netherlands that 10 brains were autopsied? Weren't there supposed to be more?
I don’t know how many they planned for originally.
Actually, it seems to me that it's a priority. Autopsies of the brains of severely ill MECFS patients. Doing 50 to 100 seems essential.
I agree it would be very useful to have more autopsies, preferably of all severities.
 
Wasn't it in the Netherlands that 10 brains were autopsied? Weren't there supposed to be more?
They plan to do more (I think I remember mention of 50?). The issue is their throughput is pretty low so they were planning to do this over the span of like 10 years or something. I wonder if all the interest in their results might encourage extra resources being spent to speed things up...
 
They plan to do more (I think I remember mention of 50?). The issue is their throughput is pretty low so they were planning to do this over the span of like 10 years or something. I wonder if all the interest in their results might encourage extra resources being spent to speed things up...
10 years !!! My god... Leaving patients in critical condition for years is criminal, especially since research can progress so quickly with MECFS. Imagine if the disease were potentially reversible? All that wasted time.
 
Wasn't it in the Netherlands that 10 brains were autopsied? Weren't there supposed to be more?
Actually, it seems to me that it's a priority. Autopsies of the brains of severely ill MECFS patients. Doing 50 to 100 seems essential.

Yes, I think we need those numbers. And it would be good to see the results sooner than eems to be scheduled at present.
 
I would like to know what role eccentric medium spiny neurons play a role in recovery from exertion, restorative sleep, and things like that.

I don't know much about the brain and would like to satisfy my curiosity. How would you go about checking whether there is a connection like this?
 
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