New paper: Progressive brain changes in CFS

[Woolie]

@Sea, @Marky90, I hear you. So much seems to point to ME cognition problems being reversible. Plus, if detectable degeneration can happen in the space of six years, those of us who've been ill for decades would surely be so impaired by now we'd be complete jellybrains.

 

[duncan]

I wish we could be confident that was the case, @Woolie. When you actually see the damage in your own brain, and you have clinicians and researchers on one side who express puzzlement, and on the other side you have doctors who try to allay your concerns with abjectly stupid observations like, "It doesn't look THAT bad", then you know the responsibility for your brain's future integrity rests with you and you alone.

There are many things about our brand of neuro-decline that appear outside conventional parameters.

Many of us had sudden acute onset (I did not). We were grandly sick. But even with this group, what portion did not suffer with overt signs of encephalitis? What damage was being done that happened off radar in a good deal of us? This alone doesn't seem to fall into normal neuro-pattern - at least not a conventional presentation from what I have been able to discern. Eventually I was diagnosed with neuro-borreliosis, but my illness certainly wasn't striking enough until after the damage had been done - at least the first three years of my neuro-Lyme was subclinical, while the bacteria co-opted my cerebellum.

And yet, I have an entire agency of clinicians who will attest that whatever the cause of my brain atrophy was, it almost certainly was not Lyme.

So...what got my brain to where it is? Vasculitis? Ok, what caused that? Whatever the culprit is, is it done, or is there more to come? Was it a hit and run, and if so, why wasn't the noise of the crash loud enough for anyone to hear, until the culprit was long gone?

It's a disconcerting thought at times, underscored by results of studies such as shared in this thread.

 

[Woolie]

@duncan, all this is doubly alarming when you read these kinds of studies. But I guess nobody knows right now whether our brain function gets steadily worse or not - or for some perhaps but not others - we're all just guessing.

I just think the best course is to keep hope until we know more. What else can we do?

 

[Marky90]

@duncan, all this is doubly alarming when you read these kinds of studies. But I guess nobody knows right now whether our brain function gets steadily worse or not - or for some perhaps but not others - we're all just guessing.

I just think the best course is to keep hope until we know more. What else can we do?

I agree. I take comfort in the fact that the human brain is an amazing adaptor. As long as there is no reason to believe there is something neurodegenerative going on, then I`m not worried about this. In fact I`m happy that i might have a revversible white matter loss, it shows that disease is physical, which is obvious to us, but not to everybody else.

In the future I would like to see them do the same thing, but in major Rtx-responders. That would surely provide clues as to the probable revversibility of these findings.

 

[rosie26]

So much seems to point to ME cognition problems being reversible

That would feel like a miracle to me, after twenty years of this. I hope it's reversible.

 

[JaimeS]

I think NCNED usually use Fukuda.

They required patients meet both Fukuda and CCC criteria to be included. (Maybe someone said this already.)

 

[JaimeS]

One comparison even showed an effect in the opposite direction to that predicted (some white matter volume measures were positively correlated with Somatic symptoms scores - that is greater volume was associated with more - not less - symptoms).

Not the case -- these tests go:

The LOWER your score
The WORSE your symptoms

I read that line twice, though, I thought the same as you.

 

[Woolie]

Not the case -- these tests go:

The LOWER your score
The WORSE your symptoms

I read that line twice, though, I thought the same as you.

I see what you mean, @JaimeS. Well spotted!

But the general problem of inconsistency persists. If larger means better for both SomaticSS and NeuroSS scores why do NeuroSS correlate negatively with: a) grey matter volume in left dorsal parietal cortex; b) T2 weighted signal intensities in various occipital and ventral prefrontal areas. That is, half the significant correlations went the wrong way!

The authors fudged around this by picking out just one finding (one in a motor area) and saying CFS patients have to work harder to coordinate our movement, and that actually improves white matter volume:

"These findings are in line with the clinical observation that CFS patients need extra effort for motor coordination, with fMRI results that CFS patients recruit more cerebral regions for tasks,[40] and with increased cortical thickness in CFS in the precentral gyrus.[8] We postulate that these increased regional GM volumes may be a result of brain plasticity compensating for communication deficits because of WM shrinkage."

Okay, so the shrinkage is caused by some vascular factor . But the increases in volume are compensation. According to this framework, any observation in any direction in any part of the brain could be accommodated! In other words, not much of an explanation.

Having looked at it a second time, I'm even less confident about the study than I was before. This statement was a worry:

For example, regional GM volumes are positively correlated with Neuro SS in the right fusiform gyrus, which is involved with brain recognition functions.

Brain recognition functions? That's bollocks. Its recognition of faces and other complex visual processing, and maybe a bit of memory.

 

[JaimeS]

Okay, so the shrinkage is caused by some vascular factor . But the increases in volume are compensation. According to this framework, any observation in any direction in any part of the brain could be accommodated! In other words, not much of an explanation.

Yeah, @Woolie , I agree. They certainly aren't explaining why one might compensate for the other, but at the same time, if one area in the brain is shrunken and has to do with, say, language, and another area that also has to do with language appears overdeveloped in comparison, I might posit that one is compensating for the other. So it's not just any area of the brain compensating for any other area of the brain, but areas of the brain linked to the same function (motor skills, if we're talking about the same bit) compensating for one another.

Still... there is not proof that this is the case. It's clearly a best guess.

J

 

[Mrs Sowester]

Brain recognition functions? That's bollocks. Its recognition of faces and other complex visual processing, and maybe a bit of memory.

Interesting, during my first year of moderate ME I became face blind to new people. I'm aware that a person is familiar but have no idea who they are or where I know them from.
I've had people approach me who use my name and clearly know me, but I've no idea who they are until someone tells me. On two occasions it's been people who've been to my home and shared meals with, but I've then failed to recognise them less than a month or two later.

People I knew before 2010 are still recognisable, but with a delay a fraction longer than is socially comfortable.

I've been trying to memorise new people by focussing on hair, glasses, clothes and idiosyncrasies. Some people change their hair colour far too often for my comfort!

 

[JaimeS]

I've been trying to memorise new people by focussing on hair, glasses, clothes and idiosyncrasies. Some people change their hair colour far too often for my comfort!

My brother-in-law has a certain degree of natural face-blindness. He'd been living with my family for months when he whispered to my oldest sister (his then-fiance), "Jaime... is the one with the long hair, right?" Worse on him because me and my middle sister look remarkably alike and, at the time, both wore dark-framed glasses.

He does just what you do: he goes by hair color, eye color, hairstyle, and mode of dress. Movies with classical characters really puzzle him... it took us awhile to realize that, when watching Lord of the Rings, he kept thinking Gandalf was Saruman, and vice-versa.

-J

 

[Mrs Sowester]

Movies with classical characters really puzzle him...

I wish people in movies would wear name badges.
And stop changing their clothes.
Or at least wear different colour hats like they did in the old westerns so it was obvious which side they were on!

 

[Woolie]

That's not fun, @Mrs Sowester. As @Jaime says, there's a lot people who have that from birth (congenital or developmental prosopagnosia), but it sounds like yours started after the ME, right?

 

[Mrs Sowester]

That's not fun, @Mrs Sowester. As @Jaine says, there's a lot people who have that from both (congenital or developmental prosopagnosia), but it sounds like yours started after thr ME, right?

Yep, I noticed within the first two months of the virus that I didn't recover from in April 2010.

It was pretty scary at first. I'd been really good with faces and not bad with names having worked in schools and preschools I was used to learning the names and faces of many new children, their parents and siblings every year. To find that ability suddenly just gone was difficult. It adds to the isolation of this illness when you can't remember the face of a potential new friend.

Other cognitive deficits seem to come and go; I can forget how to punctate or spell temporarily, if I'm overwhelmed I can't count 1 to 1. But the face blindness for new people has been a permanent fixture.

 

[Sea]

But the general problem of inconsistency persists. If larger means better for both SomaticSS and NeuroSS scores why do NeuroSS correlate negatively with: a) grey matter volume in left dorsal parietal cortex; b) T2 weighted signal intensities in various occipital and ventral prefrontal areas. That is, half the significant correlations went the wrong way!

The authors fudged around this by picking out just one finding (one in a motor area) and saying CFS patients have to work harder to coordinate our movement, and that actually improves white matter volume:

WM = white matter = some shrinkage in cfs brains
GM = grey matter = some area of greater volume in cfs brains, some area of diminished volume in cfs brains.

I don't think the correlations went the wrong way. They're just describing what they've found and trying to come up with an explanation for it. The differences are significant between cfs and controls whether it's a WM shrinkage or a GM volume increase. Both are abnormal.

 

[Sea]

Interesting, during my first year of moderate ME I became face blind to new people. I'm aware that a person is familiar but have no idea who they are or where I know them from.
I've had people approach me who use my name and clearly know me, but I've no idea who they are until someone tells me. On two occasions it's been people who've been to my home and shared meals with, but I've then failed to recognise them less than a month or two later.

People I knew before 2010 are still recognisable, but with a delay a fraction longer than is socially comfortable.

I've been trying to memorise new people by focussing on hair, glasses, clothes and idiosyncrasies. Some people change their hair colour far too often for my comfort!

I can relate to this so much too. It used to annoy me at times before illness that people I'd met briefly didn't remember me. I didn't understand that at all. I could have told you complete conversations I had with people I met. I knew when and where we met, what they were wearing and what we talked about even years later.
Sadly I now forget even my friend's names at times.

 

[Mrs Sowester]

I'm glad it's not just me, but sad for you @Sea. It's quite a loss isn't it?
It would be interesting to find out if many other PWME have developed prosopagnosia.

 

[Sea]

It certainly is quite a loss. I am embarrassed to admit to people that I should know that I have forgotten who they are or the context of where I have met them.

I find the opposite to happen as well. I see someone who is a complete stranger but something about them seems familiar and I rack my brain trying to work out: Do I know that person and I've forgotten? Have I just seen them around? Have I ever spoken to them? Is it just that they remind me of someone else that I do know or have seen on TV? Sometimes the answers come much later, but often not.

 

[Mrs Sowester]

Yes @Sea we have that in common too. As individual faces are kind of blending into a group of similar faces it's so difficult to know if I actually know the person I'm looking at. Its a bit like recognising an individual sheep in a mixed herd. I can tell different breeds of sheep apart, but would need to see an ear tag to recognise an individual!
I'm absolutely confused by seeing people out of the context in which I know them. I find myself staring until I work it out.
I find the whole business embarrassing, I'm sure I come across as rude or bonkers.

 

[JaimeS]

Hey, guys, here is the write-up on this:

Progressive Brain Changes in Patients with Chronic Fatigue Syndrome: Are our brains starved of oxygen?

A recent Australian study, Progressive Brain Changes in Patients With Chronic Fatigue Syndrome: A Longitudinal MRI Study finds that CFS patients meeting both Fukuda and CCC have decreased grey and white matter volumes in the areas of the brain we use for language processing...

Read more here.

-J