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New paper: Progressive brain changes in CFS

Woolie

Senior Member
Messages
3,263
The differences are significant between cfs and controls whether it's a WM shrinkage or a GM volume increase. Both are abnormal.
Yes, but are these abnormalities reliable markers of MECFS? Or are they just chance differences that wouldn't be found again if you did the study with a second, similar group?

That's the real problem with the results being all over the place. They don't fit with any model or previous expectation. They can only be explained by making stuff up on the spot. This makes it more likely they are just chance fluctuations.

This is not a criticism of the authors, really. You're right - they just reported what they found (and they did a pretty good job all up). But it is a reason to be concerned about whether these findings are really reliable.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
J Magn Reson Imaging. 2016 Apr 28. doi: 10.1002/jmri.25283. [Epub ahead of print]
Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study.
Shan ZY1, Kwiatek R2, Burnet R3, Del Fante P4, Staines DR1, Marshall-Gradisnik SM1, Barnden LR1.
Author information

We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w)

Hi all, Im one of the 15 participants of this study and of the original study too. So I'll try to answers any questions on this which I see being asked here (unfortunately I've forgot what the questions I saw was so I will need to go back and look[/quote]
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia

yes and no. Some of it conflicts with that, eg on reading the outcome of it.. this new one found "We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS" while that link you gave for the other study found that it was the right side which was abnormal.

Some of it agrees thou, the white brain shrinkage of the brain part. The original study of this followup study posted here, seemed to show that the longer we had ME the more brain white matter shrinkage we had. They were hoping to vertify this in this followup study.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think NCNED usually use Fukuda.

This group who did this study is not just the NCNED, most involved in this study were formally known as the Adelaide Research group. (which consisted a group of ME/CFS specialists who worked from a couple of the hospitals and in private practice).

Thou there is a great belief in PACE trial etc over here in Sth Australia re our doctors, we here have over the years had more recognition re the canadian consensus criteria compared to other states of Australia as unlike other aussie states, our states, SA ME/CFS society over here never fully adopted the original Australian CFS defination (which I dont think is too great) and also has been in support of the canadian criteria to the point of having the CCC booklet always available for people enquiring on this illness here.

Ive found that our researchers in Sth Australia (adelaide research group) do recruit the ME group of patients rather then "fatigued" patients like what happens in UK studies. They are usually recruiting their own ME patients they have seen for years and hence quite sick (note these arent doctors/specialists who are giving CBT and working w ith patients re GET at all but rather ones trying to treat actual symptoms properly be it with florinef for my POTS or whatever).

or they are recruiting patients who are finding out about their studies throu our states ME/CFS society which fully supports the canadian consensus criteria and has been giving out that actual overview booklet on that for ever since I remember (they've only just stopped doing that this year as they've run out)

Ive met several of the others participating in ME/CFS studies over here while Ive been participating and from talking to them I'd have to say they did have ME too (well at least the ones Ive met)... just looking at them you could tell they were sick.
...

The NCNED is aware of the Canadian criteria and Im sure isnt just recruiting "fatigue and depressed" patients there.

I doubt that either of these groups would recruit someone who just didnt have post exertional symptoms as the CFS doctors/specialists Ive seen (2 of them doing that study) just wouldnt diagnose someone with ME/CFS unless they had post exertional fatigue.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'm not sure why they didn't do more people. That would have helped a lot (and this stuff isn't that expensive any more).

There was more people in the original study which at the time they did (I cant remember now exactly how many, it may of been 20-30 with ME/CFS with then an equally matched sex, age, weight group as control for each person in the study).

I dont think they planned originally to do a follow up study the way they did. They had to go and track us all down again and most of us including myself had moved (so it was a surprise to get contacted again), they were having a hard time finding us all, I was told some had moved overseas. (Australians really move around)
....

I forgot to add that Dr Kwiatek did my interview for this study to check I had ME/CFS though previously diagnosed and seeing ME/CFS specialists for years, I was asked about if my symptoms were post exertional etc. Dr Kwiatek is a very knowledge dr who is aware the ME and CFS dispute stuff between the two. Hence I guess is why they played smart one could say and used both diagnostic criteria.
....

Once its fully published (or is it now?) I really hope I'll be sent my results from this study as I was from the last. The neuropsych testing on this study was so involved and indepth, looking at the different areas our brains have issues in (it was done over 2 days and on the second day my brain was near dead, I was getting terrible results).

They did so much during this study they would of gained a lot of info. Unfortunately thou during this study an specialist eye exam which got done with latest equipment looking at nerves at back of the eyes showed for me a problem to which they then refered me on to an eye specialist.

The follow up eye specialist they sent me too (not related to the study) thou was unaware that things in ME/CFS come and go, Im sure the bulging disc showing in my scan during this study was related to my due to having ME, out of regulated properly BP which spikes high and falls low (severe hypertension can show the issue which showed on my eye scan) so when I had followup check up it was fine and then my results then I believe were wrongly put down as a bad photo angle.

So on this occassion I do think a ME complication of those who have severe dysautonomia with severe ME, which showed during this study was missed.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The neuropsych testing on this study was so involved and indepth, looking at the different areas our brains have issues in (it was done over 2 days and on the second day my brain was near dead, I was getting terrible results).

I had a similar experience. In order to get 'accurate' neuropsych testing, my doc sent me home and I came back five days later. My brain was just PEM'd liek whoa on the second day of tests...

-J
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'm not sure why they didn't do more people. That would have helped a lot (and this stuff isn't that expensive any more).

They did A LOT of tests and Im sure that would of been quite expensive (SPECT scans, MRI with contract, eye test on very specialist latest eye equipment at hospital, 2 day neuropsych testing, going to peoples homes and doing BP readings, fitting them with pedometre (have I got word right?) so activity levels arent just subjective, I think we wore that for a week etc. etc Many days of tests involved for each person.

They had to book the hospital testing equipment outside of its common useage hours so was using those depts when closed.

Note this study includes also the very sick, those who cant drive or usually leave their homes without help. They had a nurse come and individually get us take us to hospital for tests and take us home if we were in that situation of needing help to get around so being wheelchair bound wouldnt have discluded anyone. (I live nearly an hour away ... for all we know maybe they would of been willing to use an ambulance if someone had been completely bedbound?)

Generally the studies being down over here are done in the kind of standards we wish all ME/CFS studies were done. (I cant remember being in a ME/CFS study over here which also didnt consider the canadian consensus criteria even if they were also using other, I think even the university ME/CFS studies i was in did that too).
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Note this study includes also the very sick, those who cant drive or usually leave their homes without help. They had a nurse come and individually get us take us to hospital for tests and take us home if we were in that situation of needing help to get around.

This is one of the most expensive aspects of such a study. The inclusion of the sickest is important, and costly in manhours.

-J
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I had a similar experience. In order to get 'accurate' neuropsych testing, my doc sent me home and I came back five days later. My brain was just PEM'd liek whoa on the second day of tests...

-J

they were different neuropsych tests not the same ones repeated on the second day as they did such a range of different ones but interesting I aced my ones the first day I think.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This study shows progressive brain damage (white matter loss) in 6 years, in people who aren't severe.

umm I use a wheelchair and basically homebound (cant leave house without a support worker) and was in this study, I'd say that was severe but not the "very severe" (completely bedbound group). They catered for us, this is what makes this study good, they werent going to leave out anyone when they followed up us.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Money is certainly one of the limiting factors. Another is finding enough suitable applicants. Not only do they screen carefully to make sure people do have ME/CFS, they also rule out for their study co-morbid disorders and anyone taking medication that they can't/choose not to stop for a week before the test. I was a subject in one of the earlier MRI studies by Barnden and Kwiatek.

nods, each person in study had a screening appointment on top of being sent lot of questionaires (so many!!). I questioned them about all this and they said they were making sure no one could dispute this study when it was published, they were well aware of how things have been with other studies. They were being so careful.

and yes.. all meds and that had to be stopped for a week as they wanted to make sure nothing was interfering with results.

....
The one thing about this study I hated was all the psych questionaires one had to do among the others.. but then they were really wanting to rule things out I guess.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I don`t think there`s any evidence for a heightened dementia risk, at least i can`t remember reading of such a thing..;)

It makes no sense to me why there wouldnt be as after all they say that exercise helps prevent dementia (its often put on guides to help prevent dementia) .. or is that something which is being said by the medical profession a myth with no grounds?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
they were different neuropsych tests not the same ones repeated on the second day as they did such a range of different ones but interesting I aced my ones the first day I think.

Ditto! I had to tell my neuropsych that exhaustion bad enough to impact my thinking was keeping me from doing well on the second set of tests, just so that he would know my brain was actually functional at doing those tasks, normally.

-J
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This study shows progressive brain damage (white matter loss) in 6 years, in people who aren't severe.
I'd love to see it over 30 years in the severely affected Vs Healthy Controls, patients who are borderline 'Mild Cognitive Impairment' especially.

I really hope they follow up on this study again in say 8-10 years (I wouldnt be surprised if these researchers did just that. Maybe some could write to them and thank them and suggest this). I kept thinking Im going to be dead from this illness by then or have an Alzheimers diagnoses by then, I know my brain has even further declined since they tested me for this study. Im struggling even more, my brain gets worst as the ME does.

As I already carry the gene for Alzheimers and hence have a 40% risk of getting this from the age of 50 onwards (Im 45 now).. I wonder just how much higher ME makes my risk? (that would be a interesting study, a group of severe ME patients who already have this gene and their percent of risk).

A doctor wanted me to go a Alzheimers/dementia clinic at the hospital not too long ago for testing there but I cant get there.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
[
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!

My own experience was similar, it was just one aspect of a slew mental deficits that eroded my sense of self and pitched me into massive memory loss. No recollection of major life events such as the birth of ones children, marriage, holidays...anything.

Some deficits fluctuated, such as word finding but others such as facial recognition were just gone. It is hard to explain what it is like to lose everything that makes you..You. Doctors, I didn't even go there

Losing it was bad, claiming it back is gruelling. After 10yrs I am back, if diminished and each day I see progress, though it maybe that I re-experience change having forgotten. Without help it is impossible to assess ones own mental status.

I don't know how much I have reclaimed and how much I have rebuilt. How an easing of of the disease process has allowed brain function to resume and how much plasticity has filled in the gaps. So much feels new and each day I test this knowledge and these skills as one would in childhood. This week I realised that I had become confident at driving again, in that I no longer had to think about it.

For me it has been a process that I shape but cannot control. Each environment I experience is so much more powerful in shaping my still malleable psyche than I am. By seeking out some and avoiding others I can grow into the person I would like to be.

I now have no trouble with faces other than distinguishing American actors whose teeth all look the same.:D
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Losing it was bad, claiming it back is gruelling. After 10yrs I am back, if diminished and each day I see progress, though it maybe that I re-experience change having forgotten.

I lost my creative ability during the acute phase. All of it.

I've been writing stories since I could hold a pen: little black-and-white notebooks filled with fiction from five-year-old me. It was like a door to my core self slammed shut and I couldn't get in anymore.

Coming back, now. Thank heavens for neuroplasticity. But still more logically-oriented than I used to be, less prone to leaps of creativity. It's the creepiest.

-J
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
I lost my creative ability during the acute phase. All of it.

I've been writing stories since I could hold a pen: little black-and-white notebooks filled with fiction from five-year-old me. It was like a door to my core self slammed shut and I couldn't get in anymore.

Coming back, now. Thank heavens for neuroplasticity. But still more logically-oriented than I used to be, less prone to leaps of creativity. It's the creepiest.

-J
Anyone older had this? I have it currently, and am almost 63. I have been ill for 21 years but never had this before.

Something physical has happened and I am longing for it to come back. It is devastating.

I can hardly do anything without mental exhaustion, and have lost my memory for a lot of things. Some are coming back, but it is so slow.
 

duncan

Senior Member
Messages
2,240
@MeSci , I have it. I wrote for a living before I grew too ill. I am 60.

Now I string ideas together, but it's a crapshoot whether the words make sense. I have lost the ability to anticipate or judge what the reader will read.

On many days it's worse than that. As a writer, that's crippling. Now when I write, I do so by the seat of my pants with fingers crossed.

My memory is suspect too in inconsistent but significant ways. For instance, I forgot my daughter's birthday. Not just that day, I could not recall the month, and when it was pointed out to me me, it seemed wrong. The next day, I remembered it fine.