Progressive brain changes in patients with CFS

Discussion in 'Chronic Fatigue Syndrome (ME/CFS) Research' started by Merry, Apr 29, 2016.

  1. Merry

    Merry Well-Known Member

    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.

    What does this change suggest about the functioning of patients with CFS? Or how do the results correlate with the dysfunction patients report? I don't know enough about the brain. Probably other HR members can suggest better questions.
    Last edited: Apr 29, 2016
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  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Wow...this could be big....It depends no how close this replicates the finding of the Zeineh Stanford study that got so much publicity

    Here's from this study which did a longitudinal MRI


    The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.

    From the Zeineh study - which did an entirely different kind of brain imaging...

    From Stanford

    But a second finding was entirely unexpected. Using an advanced imaging technique — diffusion-tensor imaging, which is especially suited to assessing the integrity of white matter — Zeineh and his colleagues identified a consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients’ brains. This tract, which connects two parts of the brain called the frontal lobe and temporal lobe, is called the right arcuate fasciculus, and in CFS patients it assumed an abnormal appearance.

    Furthermore, there was a fairly strong correlation between the degree of abnormality in a CFS patient’s right arcuate fasciculus and the severity of the patient’s condition, as assessed by performance on a standard psychometric test used to evaluate fatigue.
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Except Zeineh said his finding was something you would not find with usual imaging techniques:

    It's all very complex. My brain is full at the moment.:dead:
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  4. Tony L

    Tony L Active Member

    Merry, can't remember much about structure of the brain but found this blog which may help.

    Interesting that changes in white matter volume have previously been demonstrated as a result of learning a new motor task such as juggling. Could the reverse happen on losing skills gradually?

    In this article the cognitive effects of white matter disease are discussed.

    I certainly have all of these in differing amounts from day to day. The last two days have been as good as it gets but tomorrow may well be a different story, planning and working memory are generally poor. I'm not suggesting that this type of white matter disease is what we have but could we be underestimating the effects of long term low level (we are assuming that is the case compared with other diseases) inflammation in the brain?

    I guess it reminds me that I must work to keep as much of my cognitive functionality as possible.
  5. Merry

    Merry Well-Known Member

    Thank you, @TonyL, for the links. The blog post on white matter and the article on white matter disease were both helpful -- and disturbing. I was especially interested to read about the problem with white matter in people with autism and about white matter disease deteriorating into vascular dementia. My father, as I mentioned to you, I believe had Asperger's, and at the end of his life he suffered from dementia that I assumed was vascular. Another ME/CFS friend has thought for a long time that her eccentric mother has Asperger's, and now her mother has been diagnosed with dementia but, the friend explained, the dementia it is not Alzheimer's. I'll have to ask her more about her mother.

    My cognitive problems have always been the most frustrating ME/CFS symptoms for me to to deal with, and they are getting worse. As much as I admire Jarred Younger, I think he's probably wrong to think that ME/CFS does not cause tissue damage. Or maybe I misunderstood him. So possible!
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  6. Justarose123

    Justarose123 Active Member

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  7. Rosie26

    Rosie26 Active Member

    There has to be some proof to be found of something that has gone very wrong in the brain within this illness. The brain changes I had at my mild onset, were not mild, my other ME symptoms were. I could no longer study, concentrate for long or retain lots of information and as I approached severe ME I had to buy an exercise book to write things down because I could no longer hold things I had to remember in my head.

    I have had very significant changes in my brain. It's been over 20 years since my mild ME began and there has been no improvement. I hope this can all be turned around one day.
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  8. katvil

    katvil Member

    Maybe I just have a lot of lousy MDs, but every time I've had an MRI, "nothing" has been found in spite of the fact I have been diagnosed and re-diagnosed with ME/CFS and fibro by at least 5 doctors over the last 10+ years. Are they all wrong? Are my symptoms like everyone else's in these forums caused by nothing, including my increasingly worsening vision, my hearing loss, my being bedbound and housebound, my cognition, etc.? I would prefer to have something treatable and curable, but I keep getting the same diagnosis with only blood test results (low IgG, low IgM, etc.), high TNF Alpha, etc., and broken bones, multiple surgeries, constant illnesses and strange immune dysfunction infections such as meningitis, flesh eating bacteria, etc., as proof that something is severely wrong.

    Does anyone know if the tech doing the MRI or whatever test has to know what they're looking for or is it enough for the ordering doctor to tell them? I know years ago one doctor insisted I didn't have blood clots after surgery when, sure enough, my regular doctor found that I did. The "You have no blood clots" doctor also insisted I needed to walk more to deal with pain from a first surgery he also found nothing wrong with even though later on he realized the reason for my loss of balance (other than ME/CFS), falling and worsening pain then was the failed surgery he had himself done!
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  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    There can actually be a huge difference between one MRI machine and another. If you had a not so good machine it might not show results. The Barnden group may also I suppose be doing different kinds of MRI's or using more advanced machines. They said they used a 1.5 Tesla (T) scanner; that may be a better or different kind of machine.
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  10. Farmgirl

    Farmgirl Well-Known Member

    @Merry. I wrote Doctor Younger thanking him for all his groundbreaking work with LDN, but I also pointed out the same thing...I have been ill since I was young and have lots of damage inside and out...that just seems to have gotten worse and worse in so many ways. Oh well, hopefully these next few years will show amazing discoveries and insights into this disease.
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  11. Issie

    Issie Well-Known Member

    Having been the caregiver to both my parents before they died and watching one with cancer spread to his brain and cause a form of dementia and the other having dementia and watching her decline. I've been real interested in this subject because of my own brain fog issues.

    Having found mold in their house and my exposure there for 10 months - I started exploring that. One test done is a Neuro Quant MRI. it actually measures the size of the brain in several places and can let you know if there is Alzheimers or other issues. Including problems due to mold or Lyme. I had brain swelling in 5 places and it was/is compressing 2 areas. One of those 2 areas compressed affects memory. I was told I had "Brain on Fire". Basically a really inflamed brain. This is found in CIRS. We did all testing for this and I had 5 genetic markers with inability to throw off mold or biotoxins. I'm certain my mom had these genetics too. And suspect it contributed to her dementia. I also tested positive for Marcons. And my mom had that too. She was tested and was supposed to be treating herself for it - but her level of function was so far off - she wasn't able to help herself. (I learned most of this since their passing. If I knew then, what I know now - I might could have helped her regain some of her mental faculties by getting her out of her house and starting treatment for mold and staph. But I didn't know.)

    To make things more complicated, my own house is free of mold. My test came back good. Yet, despite 3 years of detoxing - my markers indicate current exposure. We found mold in my thyroid biopsy. My then doc says it's internal and it's a genetic flaw and we are missing a protein to help the immune system be able to detect and defend. What he had thought to be a protozoa in a biofilm - is a mold. With my MARCONS and antibiotic resistance to kill it - the one medicine he has found helpful is doxycycoline along with Diflucan. Doxy, does nothing for me. So, we are trying to use herbs.

    I'm now seeing a Naturopath and we are using things she learned from Shoemaker and Klinghardt and her own spin on things. I'm starting to feel like I'm seeing a little light and turning a corner. It's a very subtle change - but I'll take it. Most likely, with my genetics - unless they can come up with a way to get us that protein - this is a lifelong issue for me.

    My sis who has CFS really bad and one of her sons has CIRS and MARCONS too. We got handed some bad genetics. But thankfully, I think I've got it figured out. I know the "Why", just have to figure out the "what" to do for it.

    I'm also being treated for Lyme and Babesia. I think that's better.

    My brain fog is slightly lifting and I can research and think better now. I'm not as fearful of my brain any more.

  12. Issie

    Issie Well-Known Member

    Forgot to mention - CIRS markers are very similar inflammation to sepsis. No wonder we have FMS and CFS.

  13. Merry

    Merry Well-Known Member

    I'm surprised to discover that I started this thread. I have no memory of doing that. :(
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  14. Farmgirl

    Farmgirl Well-Known Member

    @Merry you have a wonderful sense of humor. :-D
    Now, i just did the same thing...saw a list Cort posted, thought it was great, went to "like" it and saw I already had! If we don't have humor, life can get depressing! ;-{
    Have a the best day you can!
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  15. Issie

    Issie Well-Known Member

    I read a post a few days ago and can't find it now. The person was talking about Alzheimers and a connection with CIRS. They listed a book to read " The End of Alzheimers by Dale Bredesen". I got it today and nearly halfway through it. Really a good book to read and apply. Inflammation being a huge factor in the brain.

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