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Possible Brain Biomarker for ME/CFS Found

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osisposis

Senior Member
Messages
389
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
osisposis said:
Reading impairment in a patient with missing arcuate fasciculus

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671152/
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Interesting. When I suddenly worsened (not the actual M.E. onset), on top of a week or so of complete amnesia, I lost the skill of being able to read. It was something quite apart from the problems caused by having almost no short term memory or not being able to get my eyes to focus consistently.

I wasn't able to recognise words, only letters, but I still knew the rules of spelling. So if the letters stopped swimming around on the page long enough I was able to read but only from first principles - much good it did me with the memory problems. It took some time to get back to the stage of recognising words again although even now (25 years on) the letters have a tendency to wander around a bit.

It helps if I use my finger underneath the words to draw my attention to that particular spot. I'm too proud to do it much. I never ever did it as a child.

Learning to read was easy. Reacquiring the skill of it was not.

I think that reading difficulties in PWME are massively underestimated unless I'm very unusual.
 
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osisposis

Senior Member
Messages
389
Scarecrow said:
Interesting. When I suddenly worsened (not the actual M.E. onset), on top of a week or so of complete amnesia, I lost the skill of being able to read. It was something quite apart from the problems caused by having almost no short term memory or not being able to get my eyes to focus consistently.

I wasn't able to recognise words, only letters, but I still knew the rules of spelling. So if the letters stopped swimming around on the page long enough I was able to read but only from first principles - much good it did me with the memory problems. It took some time to get back to the stage of recognising words again although even now (25 years on) the letters have a tendency to wander around a bit.

It helps if I use my finger underneath the words to draw my attention to that particular spot. I'm too proud to do it much. I never ever did it as a child.

Learning to read was easy. Reacquiring the skill of it was not.

I think that reading difficulties in PWME are massively underestimated unless I'm very unusual.
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I remember being very slow and having to read things over and over again and still didn't soak much in,still nothing like I functioned before. yes things still move around on me to a little here and there somethimes, and no, I haven't took the time to re-learn how to spell, I use be bad about mixing letters in a word up, still do some, and for some reason I almost chronicly forget the n't on the end like on wouldn't. I suspect the left AF is damaged as well.
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Valentijn

Senior Member
Messages
15,786
I was taking intensive Dutch language classes when I came down with ME. I started having problems, but it was a lot worse with spoken Dutch versus written, since I could take the time to analyze everything and correct myself with the written bits.

I failed a spoken test badly, after passing a more difficult written test, and both the teacher and a friend who was there for my spoken test were pretty shocked at how badly I did. I was shocked that they thought I did badly - I had thought that I did fairly well.
 
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osisposis

Senior Member
Messages
389
I'm not doing anything to well right now, but anyways, I dont and cant take the time to be overly woored about correcting all my mistakes cause I'm slow and easy distracted and I would get even less done than I do. but having severe bilaterial cataracts at age 41 is very rare and I still have double vision and bluuriness in both eyes and inflammation, so even though I'm left handed I breath through both sides of my nose and have had pretty severe sinus/brain involvement, but the left cataracts was worse/more advanced than the right and I have loss of smell on the left where as the right is somewhat distorted but not as bad as the left. but I know what got me here and with the many studies that have came out in the last 2-3 years how it happens is no longer a big mistery. however severe mutiple hypersensitivities has hindered any treatment and I've gotten very ill just setting in the waiting rooms to see doctors that didn't help me so it's been ruff to say the least. :(
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
An interesting article re ME, and the Stanford brain study, with an interview with Dr Bateman & one of her patients:

Utah researchers working to recognize the 'invisible illness'
by Sara Jarman
November 5th, 2014
http://www.ksl.com/?nid=1012&sid=32227688

Interesting extracts:
ksl.com said:
CFS/ME affects neurological function, metabolism, hormonal regulation and circulation/blood pressure, giving the sufferer crippling fatigue.
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I've not seen it described this way before, exactly, and I think it's a good description, except I'd prefer to see "fatigue" replaced with "pain and exhaustion".

ksl.com said:
The term ME is uncomfortable for many U.S. scientists and doctors because “itis” denotes that there is inflammation that you can see under the microscope or measure. However, recent studies suggest that the “itis” — or inflammation — might be there. “Which is really huge,” according to Bateman.
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ksl.com said:
A problem with diagnosing ME/CFS is that it is often perceived as “kitchen sink definition,” with some health care providers — and self-diagnosing patients — labeling non-specific, poorly understood symptoms as CFS. This marginalizes the patients who actually struggle with the very specific symptoms of CFS or ME, preventing them from receiving needed care, Bateman said.
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spaceboy3000

Messages
15
Location
Atlanta
Can anybody here read/INTERPRET NeuroQuant results? I've got mine and have no idea what they imply, still have a while to wait before my next specialist appointment. IF SO, please PM me!!

Thanks!
 
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osisposis

Senior Member
Messages
389
spaceboy3000 said:
Can anybody here read/INTERPRET NeuroQuant results? I've got mine and have no idea what they imply, still have a while to wait before my next specialist appointment. IF SO, please PM me!!

Thanks!
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I dont know, sorry, did you go have the scans done or did you send in a MRI to have analized? I was thinking this is another option to having this done but really have not had time to figure out if thats what I read means or weither you in fact just have to go and have the testing/scans done
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natasa778

Senior Member
Messages
1,774
This experimental study might be relevant wrt brain pathology findings ? (still unpublished)


The male and female rats both show some sensory impairments. They react strongly to loud sounds even when they’re preceded by softer sounds, a phenomenon called prepulse inhibition. A close look at their brains reveals a thinner frontal cortex and a thicker cingulum — a tract of nerve fibers that connects different brain regions — than in controls.

Male rats also have a thinner corpus callosum, which connects the brain hemispheres, than controls do. And they have larger lateral ventricles, the fluid-filled spaces in both brain hemispheres.
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shewolfdc

Messages
5
Forbin said:
Fascinating. Someone should do MRI's of ME patients who have "recovered" or are in remission to see weather these changes persist when symptoms abate. It might reveal whether the changes seen on MRI's themselves produce the symptoms, or whether the changes are "collateral damage" or perhaps even some kind maker of susceptibility present from birth.
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shewolfdc

Messages
5
Forbin said:
Fascinating. Someone should do MRI's of ME patients who have "recovered" or are in remission to see weather these changes persist when symptoms abate. It might reveal whether the changes seen on MRI's themselves produce the symptoms, or whether the changes are "collateral damage" or perhaps even some kind maker of susceptibility present from birth.
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People recover?
 
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shewolfdc

Messages
5
SOC said:
Depends on how you define "recover". :) Some people do get significantly better with proper treatment. I wouldn't say they're cured.
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Negative thinking on my part. Guess I'm kind of bitter. Would like my life back. I am significantly better from antivirals. Just not cured.
 
SOC

SOC

Senior Member
Messages
7,849
shewolfdc said:
Negative thinking on my part. Guess I'm kind of bitter. Would like my life back. I am significantly better from antivirals. Just not cured.
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I'm not at all confident that "cured" is possible at this time. It may never be.

Two members of my family are living normal lives -- school, work, marriage, social activities. One even engages in competitive sports and social dancing. The other still doesn't do competitive sports, but can do things like day-hiking. She takes many treatments to maintain her functionality. She is definitely not cured, but she has a reasonably normal life. I'd take that.

I've gone from bedbound to working full-time at a non-demanding job with understanding clients. I can shower every day. I can keep my house clean and feed myself. I can go grocery shopping without a cart/wheelchair if I haven't PEMed myself. I can't usually work all day and socialize in the evening. I wouldn't try hiking or any kind of long walks. Heavy labor, even gardening, is still not possible. I take many, many pills to stay functioning at this level and I pace myself very, very carefully. I am definitely not cured, but I didn't expect to be this far along before The One True Treatment was discovered. It's not perfect, but it is SO much better than bedbound and unable to think straight, that I feel like I have a lot of my life back. Not all, by any means, but a lot.
 
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