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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm a neuropsychologist/cognitive neuroscientist.
I have no doubt that CFS will change your brain. But then going for a jog or having a good nap will also change your brain. Most studies, if they're measuring real effects at all, are measuring effects, not causes.
Simple is good. Complex usually means there's something in the explanation that isn't doing much explanatory work, something we need to let go of.
So, to answer the original question, I think parts of the disease are a result of initial CNS damage
I'm just like you. Stuck in bed right now with nothing better to do (not enough cognitive ability right now to do any real science). There are lots of us here at PR that either had scientific careers before our illness or who still maintain them somehow, despite the illness (that's me right now, although I'm not sure how long I can keep it up). Others, like @Tom Kindlon, got sick long before they could train in anything, so have self trained. His level of accomplishment is nothing short of amazing.That's great! Thankful you're here and willing to give so freely of your time and expertise
The second one.Do you think the brain changes imply a permanent damage or something that can go back to normal?
I didn't have one, did you? If we are supposed to believe we all had injuries we're not aware of, then that's starting to look like a dodgy and unfalisifiable explanation to me.Yes I agree, which is what lead me to my original train of thought. What do you think of Byron Hyde's definition of ME which requires an acquired injury to the CNS?
I didn't have one, did you? If we are supposed to believe we all had injuries we're not aware of, then that's starting to look like a dodgy and unfalisifiable explanation to me.
I'm just like you. Stuck in bed right now with nothing better to do (not enough cognitive ability right now to do any real science). There are lots of us here at PR that either had scientific careers before our illness or who still maintain them somehow, despite the illness (that's me right now, although I'm not sure how long I can keep it up).
However, my ME/CFS did not appear in its full aspect until around at least a year after this brain infection. So in my case there was no clear connection between my brain infection and the onset of my ME/CFS, although I guess the brain damage it caused may have played a role in my gradual onset into ME/CFS.
Link to the abstract of the articles cited in relation to this claim are here and here.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/
The author writes:
"The loss of grey matter in the brain, especially in Brodmann's area 9, was related to physical impairment, but not to the duration of the symptoms. Although other explanations were considered as well, this may indicate the occurrence of a major trauma to the brain at the start of the disease. This could also explain the low recovery rate in adults, because repair in adult brain is limited [4]."
Some people in the field are saying now that the methods we use to detect volume loss in white matter or grey matter, or even qualitative changes in these, might actually be picking up on really, really temporary things, such as changes in blood perfusion (the flow of blood through the brain tissues).
They would never get published if they didn't find some difference.Isn't it strange that all these studies are finding something wrong in the brain even if it's different?
Not sure, but blood perfusion is a function of activity levels, so you would need an equally deconditioned control group first.Why do you think so many ME SPECT studies show hypofusion to the brain stem, which in my understanding isn't in other conditions like depression?
Now, have I totally destroyed your faith in science? That tends to happen when you spend too much time looking into CFS. So much BS out there.
Not sure, but blood perfusion is a function of activity levels, so you would need an equally deconditioned control group first.
Yeeeh, and I haven't responded to @aaron_c yet either about the Erikson theory (thanks for that link, aaron_c).Setting aside evidence or reproducibility, in your mind is there any conceptual validity to Hyde's theory of microvascular viral injury / immunological cuffing cutting off blood flow to select parts of the brain?
Once you start thinking of the brain as a body part - and a very greedy one at that - then it seems completely logical that any systemic illness will massively affect brain function.
One example would be vestibular issues. A number of people report onset of vestibulitis with ME onset, I am one of them. My balance has never returned to normal and probably never will.You seem to know a lot! What noticible effects do you think the CNS damage has?
I think if that were the case, after 27 years, I wouldn't stlll be in a job. And there would be no patient-researchers.Ah! So then might lack of blood flow cause long term damage? Or could something like vinpocetine or hyperbaric oxygen revive "sleeping" neurons?
One example would be vestibular issues. A number of people report onset of vestibulitis with ME onset, I am one of them. My balance has never returned to normal and probably never will.
I now think my condition maybe linked to Th-17
I have never heard of "sleeping" neurons. They're either active or they're not. If you have a stroke, they're dead, but you can't wake them up again, alas.