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Possible Brain Biomarker for ME/CFS Found

PNR2008

Senior Member
Messages
613
Location
OH USA
I've raised German Shepherd Dogs (GSD) since I was 18 years old. When I first got CFS/ME I could not remember my dog's name and I always mixed up dishwasher and lawnmower (go figure, not even close).

My SPECT scan showed changes in brain activity after exercise consistent with CFS/ME, Dr. Goldstein felt this test was definitive.

MRI showed ubo's (unidentified bright objects) and ischemic changes probably due to complex migraines that I've dealt with since 11 years of age.

These were tests taken more than 20 years ago! Dr. Mena worked with Goldstein. Why so long to put this altogether? Those of us in our 60's don't have much time to fool around. I'm disgusted.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A memory problem I've had since coming down with ME is a reduced ability to store information that is spoken to me. For instance, if someone gives me driving directions it's almost as if my mind turns off the input the first time I hear it. I have to ask for the directions to be repeated and then I really have to focus on them. This is also true when I'm given other serial lists of instructions, or try to remember names when I'm introduced to more than one person. Everyone may have this to a degree, I suppose, but this got a lot worse when I got ME.

[Not to be flip, but it's actually kind of reminiscent of a recurring gag used on the old TV show "Get Smart." The Chief turns to Max and says, "Now this is what I want you to do." He then gives Max a lengthy list of instructions and says, "Now, have you got that?" and Max responds, "I think so Chief. There's just one part I don't get." "What part don't you get?" "The part after 'Now this is what I want you to do.'"]

It's good to look on the funny side - helps keep us sane! There is a whole thread on various types of mental lapse and mistake in ME here.

The issue of having to really focus consciously strikes a chord with me, and seems to be consistent with findings that we use more brain areas to solve problems than people without ME.

It often feels to me as though the subconscious/instinctual part/function of the brain is almost-completely absent. For example, I have to concentrate hard when going up and down steps and stairs as my feet don't seem to 'know' where they are in relation to the ground. I can't instinctively sense when there is a person or cat in the room or nearby, as I used to. I often feel as though I'm in a bubble, disconnected from the world around me. It seems to be closely associated with vision, so maybe with the visual cortex? I think that a lot of what we see is perceived and processed unconsciously, but in ME this is impaired. The eye muscles may be involved too - I sense that they are not as good at following movement as pre-ME, hence some of the disorientation.
 

catly

Senior Member
Messages
284
Location
outside of NYC
All I can say is Kudos to the Stanford team for getting this study done, published and for getting so much press. I really do hope this study, along with the recent Japanese study, is considered significant and it helps to gain more traction for bigger studies of the brain. I've always felt that my symptoms stem for something neurological--from the first day with sudden onset of stroke like symptoms.

My question is how was this study different from all of the work Natelson has done on the brain? I mean, he's been getting NIH research grants to study neurological implications for ME/CFS for what 12-13 years now?
 

Sidereal

Senior Member
Messages
4,856
Not to sound "negative" or anything but MRI research on every disease is plagued by random findings. When you carve up the brain into regions and do a large number of statistical comparisons between patients and controls, some will be significantly different just by chance alone. This happens all the time, no big deal. Where I trained we would shrug our shoulders when reading papers like this unless something was replicated over and over again.

What worries me is the over-the-top language surrounding this, including the word "biomarker" being thrown around.

Obviously this thing about the right arcuate fasciculus was a post hoc finding, not something they had hypothesised a priori, i.e. it's not something they had specifically set out to study. I would be curious to see the full text. Usually press releases are far more egregious than the actual papers.

I would be blushing big time if someone had told me to call this a biomarker to a journalist. No one seems to be quite sure what that part of the brain does, let alone what its enlargement might or might not mean or how it relates to pathophysiology of CFS. I wonder what their discussion says.

Diffusion tensor imaging produces pretty pictures, though. Better this stuff making the headlines than some idiotic CBT "research".
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France

A.B.

Senior Member
Messages
3,780
Not to sound "negative" or anything but MRI research on every disease is plagued by random findings. When you carve up the brain into regions and do a large number of statistical comparisons between patients and controls, some will be significantly different just by chance alone. This happens all the time, no big deal. Where I trained we would shrug our shoulders when reading papers like this unless something was replicated over and over again.

On the other hand, "The differences correlated with their fatigue—the more abnormal the tract, the worse the fatigue." which makes it more likely that this isn't a random finding.

http://www.eurekalert.org/pub_releases/2014-10/rson-mib102314.php
 

osisposis

Senior Member
Messages
389
I'm a lefty and I had considerable problems with speaking , memory. I'm sick from WDB exposure, right after that I couldn't carry on a conversation, I'd switch in the middle of saying something to a tottally different subject, there were times when somebody would ask me something and what came out of my mouth had nothing what so ever to do what the question, even still a re-exposure to a trigger can cause slured speach, and it can be very hard for me to find words to express myself, some chemical exposures would make me start studdering, and on a few occasions I basicly couldn't talk, I can set here in my quite space undistracted and and on good days do fairly well with thinking but I basicly get distracted very easily now and sometimes just by trying to talk I lose my thought. been a long hard road, got sick 2001, diagnosed CFS,FM,PTSD , IBS, MCS,chronic sinusitis/rhinosinusitis, highly allergic to molds, specific IgE and IgG to molds, affected my vision pretty bad too. memory loss,short term memory, delayed thought process going on, cant see to organize anymore and can not multitask anymore. and I may of left something out cause I usually do . being left handed I have wondered about how that influenced my brain with this.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Arterial spin labelling looks at blood flow but as they found no difference between patients and controls we can ignore that.

Are there many other studies that look at perfusion? I always thought this was important as a possible cause of cognitive difficulties and orthostatic intolerance. I assume the participants were laying down. What would they see if the participants were standing?
 

Kati

Patient in training
Messages
5,497
There have been far more significant studies showing that this is a "real" condition. I suppose we're getting over-the-top headlines and media coverage because this is coming from a Stanford press release.
Let Stanford have fame. :)They are doing a good job at promoting their work and they entirely deserve it. I am very glad the editor did not call it CF but went for CFS.
 

Kati

Patient in training
Messages
5,497
@Jonathan Edwards i wonder if you had a chance to read the paper and to talk about it to your neurologist or radiologist buddies? ;)

I would love hearing your comments, and what it means for the field.

I also woner where this fits in subsets, and whether this is a piece of the puzzles that fits nicely with other findings, perhaps we have found one of the 4 corners of said puzzle? :D