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CNS findings in chronic fatigue syndrome and a neuropathological case report

Discussion in 'Latest ME/CFS Research' started by Kati, Apr 7, 2017.

  1. Kati

    Kati Patient in training

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    CNS findings in chronic fatigue syndrome and a neuropathological case report

    Kimberly Ferrero, Mitchell Silver, Alan Cocchetto, Eliezer Masliah, Dianne Langford
    DOI: 10.1136/jim-2016-000390 Published 6 April 2017

    Abstract
    Chronic fatigue syndrome (CFS) is characterized as a persistent, debilitating complex disorder of unknown etiology, whereby patients suffer from extreme fatigue, which often presents with symptoms that include chronic pain, depression, weakness, mood disturbances, and neuropsychological impairment.

    In this mini review and case report, we address central nervous system (CNS) involvement of CFS and present neuropathological autopsy findings from a patient who died with a prior diagnosis of CFS.

    Among the most remarkable pathological features of the case are focal areas of white matter loss, neurite beading, and neuritic pathology of axons in the white matter with axonal spheroids.

    Atypical neurons displaying aberrant sprouting processes in response to injury are observed throughout cortical gray and white matter.

    Abundant amyloid deposits identical to AD plaques with accompanying intracellular granular structures are observed as well.

    Neurofibrillary tangles are also present in the white matter of the frontal cortex, thalamus and basal ganglia.

    Taken together, these neuropathological findings warrant further studies into CNS disease associated with CFS.

    Note the full text available at Sci-hub
     
    Last edited: Apr 7, 2017
    mango, antherder, wastwater and 24 others like this.
  2. duncan

    duncan Senior Member

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    At least we are clear on what it will take for us, individually, to get more researchers to appreciate there can be neurological involvement in pwME.

    I am in no hurry to volunteer, though.
     
    Webdog, alex3619, TigerLilea and 3 others like this.
  3. Daisymay

    Daisymay Senior Member

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  4. charles shepherd

    charles shepherd Senior Member

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    Interesting…...

    Abstract from a Journal of the Neurological Sciences report below on 4 UK post mortems from the UK post mortem research group:

    (CS is a member of this group and some of this work is supported by funding from the MEA Ramsay Research Fund)

    Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
    DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
    1Addenbrooke’s Hospital Cambridge UK
    2Queen’s Hospital Romford Essex UK
    3Royal Devon & Exeter Hospitals UK
    4Honorary Medical Advisor to ME Association UK

    Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

    We report the post mortem pathology of four cases of CFS diagnosed by specialists.

    The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

    Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

    The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

    One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
    One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

    This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

    Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

    The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

    Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

    A specific CFS / ME brain and tissue bank in the UK is proposed.
     
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  5. Kati

    Kati Patient in training

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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Not for me.
     
  7. Manganus

    Manganus Senior Member

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    Canary islands
    Not exactly. But you need a working brain to figure out that your headline is a link too.
     
    arewenearlythereyet and Izola like this.
  8. Valentijn

    Valentijn The Diabolic Logic

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    Your link at the end of the first post is a bad one.
     
    Kati likes this.
  9. Kati

    Kati Patient in training

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    Thank you, I changed it for Sci-hub
     
    Valentijn likes this.
  10. Daisymay

    Daisymay Senior Member

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    LOL yes and mine wasn't hence I posted the link! Sorry Kati.
     
  11. hixxy

    hixxy Senior Member

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    I would think this would be nowhere near the first time pwME have had an extensive autospy done so something like this should have shown up in the past?. Would that make this patient an outlier or an uncommon subtype? It just seems, I dunno, strange, disconcerting that something like this would show up after so long if this is a common presentation.
     
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  12. JaimeS

    JaimeS Senior Member

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    Agreed @hixxy although white matter pinpoint lesions are a pretty common finding, and are listed as part of diagnostic criteria in CCC. Re: amyloid stuff, though, that's just what I thought.

    Then I had a second thought: I wonder if autopsies aren't done on CFS patients generally. If we die of a heart attack or cancer, they're not going to be looking at our brains. Mirza is the patient most-cited, and she had such obvious signs of infection in the brain that I doubt they were looking for amyloid plaques.

    Not to be left out is the possibility that this person had Alzheimer's as well as CFS (ugh) and no one noticed the Alzheimer's because brain fog was severe in the first place.

    I think one of the weirdest, worst, most often ignored aspects of this illness is the way it makes us (and our doctors) ignore new signs or symptoms as yet another ME/CFS gremlin. We learn that even our most profound and debilitating symptoms are unfixable, and therefore ought to be rested-through and/or ignored to the best of our ability.
     
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  13. dreampop

    dreampop Senior Member

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    I agree with all of this. Even if they are done, how critical are the autopsies? Are they looking in the right places, with the right tools? I suspect not.

    The good news is Fluge and Mella have CFS brains & spinal cord, and iirc the OMF is starting a brain biobank.
     
    JaimeS likes this.
  14. Art Vandelay

    Art Vandelay Senior Member

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    Alison Hunter had an autopsy and they apparently found evidence of severe infection:

    https://meaustralia.net/2016/12/13/case-report-alison-hunter/
    https://www.ncbi.nlm.nih.gov/pubmed/27091026
     
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  15. ebethc

    ebethc Senior Member

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    The amyloid plaque finding is new to me and very interesting.. last fall I discover wobenzym & proteolytic enzymes... it's been one of the most helpful treatments for me by far and I think I need to take them forever...

    I also just discovered that proteolytic enzymes are helpful for mast cell disorders, although I don't understand why and can't find an explanation..

    Proteolytic enzymes come from the pancreas, and CFS seems to be a metabolism error involving glucose... could the root cause be in the pancreas??


    Ps.. I don't think depression / psych issues are a primary symptom and I wish the medical community would quit gaslighting me... I've always been surprised at how NOT depressed I am... I have much more anxiety and worry, which I believe has something to do w overtaxed adrenals... from the outside, low energy and poor cognition LOOKS like depression but it's not, just like jet lag and hangovers and the flu are not depression
     
    Last edited: Apr 8, 2017
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  16. charles shepherd

    charles shepherd Senior Member

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    I was involved with obtaining very detailed clinical information on all the UK cases that we reported on (and some others where the findings have not been published), as well as post mortem attendance in one case, and with the previous report (McGarry et al) where enteroviral RNA was found in skeletal muscle, heart and brain (hypothalamus).

    All of these patients had well defined ME/CFS

    Interestingly, there was no evidence of the sort of widespread inflammation in the brain and spinal cord that would be consistent with a pathological definition of encephalomyelitis and I am not aware of any post mortems performed outside the UK where pathology consistent with an encephalomyelitis has been confirmed in the literature

    We did report on dorsal root ganglionitis in some cases - but the dordal root glanglia lie outside the spinal cord and form part of the peripheral nervous system

    Dr Charles Shepherd
    UK post mortem research group
     
  17. RogerBlack

    RogerBlack Senior Member

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    Is there any general biobank for post mortem samples one can sign up for?
    Accidents happen, and whatever the case, at some point, we're not going to need them.
     
    mango likes this.
  18. valentinelynx

    valentinelynx Senior Member

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    Exactly. Had the same problem...:p
     
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  19. charles shepherd

    charles shepherd Senior Member

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    There is a 'statement of intent' on the MEA website for people in the UK who want to donate their body to ME/CFS research:

    http://www.meassociation.org.uk/wp-content/uploads/2010/03/Statement-of-Intent-insert.pdf

    Unfortunately, there are major practical, legal and ethical reasons why we are unable to do this for people living outside the UK

    I'm not sure if any other organisations or charities provide this service outside the UK

    CS
     
    JaimeS likes this.
  20. charles shepherd

    charles shepherd Senior Member

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