Jarred Younger confirms neuroinflammation in brains of ME patients

Sorry if I’ve missed this but wasn’t this originally part of or derived from a large study done on rheumatoid arthritis by Jarrad younger?, there’s a YouTube video on it. I’d be interested to see their results vs ours.

This is the interesting YouTube presentation younger did as he started this work. Here he says he wants to study FM, TBI , MS, RA as well as CFS brains.

https://www.youtube.com/watch?v=1p6UojKL010

 

I don't think I have brain inflammation and my head doesn't feel warm (only since menopause). I don't get headaches, but I do experience the 'brain nausea', malaise and everything else you described. I always attributed it to dysautonomia.

 

If something is published in Japanese it either means that the international journal industry is not even interested - which has to be pretty bad - or the authors do not think it is even worth trying. I think one can assume that something published in Japanese is not going to make a quantum leap forward.

 

What is relevant is if a part of the body is hotter than it normally is in relation to the rest of the body. But that does not have to indicate inflammation. It indicates either increased blood flow or increased local metabolism.

 

I was so ill I was frightened after the last car journey.
It was a long drive to Cornwall from London but we split the journey halfway at Honiton. First day seemed ok. I went straight to bed when we got there - orthostatic intolerance is severe for me, and we had a meal brought in.
Same distance the next day but then for 48 hours, it was unmanageable and I was really ill for 2 weeks. Even 12 days later, I could not sit up for the whole of my son’s 40th birthday meal in a restaurant and had to lie down. Fortunately most patrons had gone by then and the restaurant knew us.

My adult children who were there as well were concerned and my som brought me an air ticket home from Newquay to Gatwick. The flight time was about 1hour 10 Mins but about 20 mins of that was on the ground. And I felt fine sitting upright- no dizziness, exhaustion, nor on arriving at Gatwick. The only problem was that Flybe had destroyed my wheelchair. I will definitely fly to Cornwall next year.

We do fly to the US fairly often because our son lives in NYC and so far I have managed the journeys. It’s an 8 hour flight and times are carefully calculated to suit my best times of day. When there we do not take advantage of all on offer; just a small outing by wheelchair and taxi each day, the rest of the time reclining. It’s hugely important to me psychologically to be able to do this. I have had no dizziness etc on the plane, but car travel is out. Car journeys quickly put me into sensory overload. I wonder if that could be linked to inflammation.
I’m not sure about trains. It’s a while since I did a lengthy journey.

So @Jenny TipsforME, if you have an airport within easy reach, and are extra careful with your adjustments, it may be worth a try.

 

I also do better with planes than cars and trains. I have not tried trips longer than 4 hours, though. That was not the best bc of my OI issues and not having a lot of space to have my feet up, but did not get the intense discomfort and PEM that I get from traveling by car.

 

I have problems with headaches from trying to concentrate, not sure if its heat or lactate but it builds up and takes hours to dissipate.

I have a kind of "airhead mode" which I use to get by without making it worse most days, I just try not to think too hard about anything.

This is why appealing my misbegotten PIP decision made me so ill, as I had to focus to complete the appeal within a deadline. I won but it made me really ill and the habit of pushing through instead of airheading (reinforced by the fear of being so out to lunch I cannot even think straight next time it happens) has made me prone to headaches ever since.

 

I've been following Jared Younger's research for awhile now. One thing puzzles me: he has an undergraduate degree in psycology, a PhD in psychophysiology (not hard basic sciences, as far I know). And some fellowship in experimental neuro-psychology or something like that.

I would rather a researcher who is studying gaps in the blood-brain barrier and immuno-defects there have a PhD in immunology or at least a hard science background. I have seen one study where Younger took a large group of herbs and such and gave them to research subjects to see if they had any reaction in their ME symptoms. I question that approach. There is something a little too overtly ambitious about this guy, versus a scientific approach. Maybe it's my pessimistic post PEM mood though...

 

Indeed, and although it is the brain that decides you are too hot, sensing the blood temperature, it makes you feel that your body is too hot, not your brain.

 

I used to feel my brain get hot when I over exerted it cognitively and my spine used to feel burn too. I also get the “fried brain” feeling where if I was too draw it would be black and burnt out which might fit with brain Cells functioning* anaerobically and lactate but who knows. Certainly people with ME are complaining of strange feelings inside their head which aren’t headaches and potentially significant issues with normal cognitive function so I really hope jarred is onto something which can only be known through larger brain studies. Maybe as someone said the OMF conference will cover it.

 

One thing that is interesting about the Japanese PET (1) study is that areas that show up with reduced white matter (2) matched pretty similarly with areas that had increased "activated" astrocytes/microglia. Studies tend to find less blood in the brains of CFS patients or their brainstems (3) (4), but also sometimes normal at rest (5).

Some general thoughts

1) It seems unlikely that inflammation would correlate in areas that get less or normal blood flow.
2) It seems reasonable that less white matter would correlate with less or normal blood flow.

So, my first thought is all this info is low quality and not to read too much into it. But, if I were, I would think it's all suggesting somethign other than inflammation in the brain. Which makes sense since we are profoundly sick without the symptoms of profound brain inflammation. Else, I think seizures and psychosis would be core symptoms of CFS. I'm goign to assume it's possible to have immune activation w/o vasodilation but just calling it inflammtion doesn't help us figure out what that is.

I do hope that PET study is replicated (and I think Van Elkazzor, Columbia, and the original authors are workign on replications). Then you could start to look at the events that lead to these things all happening in the brain at once.

 

It is slightly puzzling but Psychology can be more like hard science than people expect. Eg neuro lectures can be difficult, you learn the anatomy and function of different parts of the brain and some general neurology. I’ve forgotten most of this content but I do remember it being very sciency and compulsory to pass, and presumably Younger has kept this knowledge fresh and built upon it. As a psychology student I did read medical journals and go to the Medic library to write essays. Though I don’t remember much, this enables me to vaguely understand a lot of ME medical papers now (though at times this might be misleading half knowledge).

 

New post by cort Johnson, this time on jarred younger’s new PET scan study. It’s funded by MERUK and is quite an expensive pilot study. Nice to see UK charities funding cutting edge, useful stuff.

https://bit.ly/2xDpYkH

“We don’t know what Younger will find when he peers into the brains of ME/CFS patients, but we do know he has the possibility of producing a major finding which, one would think, could produce a turning point for this disease. For that we can thank MERUK, a Scottish research based ME/CFS non-profit who’s motto is “Energizing Research”. MERUK, a small organization, dug deep to give Younger 160K to get his pilot data. It’s an expensive study – the PET scans run at $5K an hour – but if it works out, Younger’s study could produce results that will make those costs trivial.“

 

Nicely relevant to ME. It's as if ME research itself has been suffering from ME.

 

That may explain why the report from Cort reads like an advertisement for "Central Sensitisation" for people with fatigue. It could just be Cort but maybe Jared Younger has the same bias? Hope not.

 

Well it could be increased local metabolism. I noticed that the temperature increases when I attempt intellectual work. It eventually starts to feel like a fever, and capacity to perform that intellectual work decreases. So maybe it isn't inflammation after all but some metabolic problem? Aren't these possibly two sides of the same coin? In any case the brain does not appear to be healthy.

 

My face feels hot and I get visible flushing the day after I’ve overexerted (looks like I’ve had one too many). This appears to coincide with a drop in heart rate though. I went to a funeral this week (emotional but not much exertion physically). My heart rate was through the roof that day. Next day my heart rate drops below normal and I get the flushing? Obviously cognition is impaired but I don’t think it’s directly connected to the flushing more happens alongside rather than a direct connection. I’ve noticed this heart rate thing several times now.

I suspect that hot flushing is a heart rate/circulation thing in my case.

I’m interested to see what this study reveals and what it means...not sure we have much to go on yet though.