New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Multimodal and simultaneous assessments of brain and spinal fluid abnormalities in CFS

Discussion in 'Latest ME/CFS Research' started by Kati, Feb 28, 2017.

  1. Kati

    Kati Patient in training

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    Multimodal and simultaneous assessments of brain and spinal fluid abnormalities in chronic fatigue syndrome and the effects of psychiatric comorbidity

    Benjamin H Natelson, Xiangling Mao, Aaron J Stegner, Gudrun Lange,
    Diana Vu, Michelle Blate , Guoxin Kang , Eli Soto, Tolga Kapusuz,
    Dikoma C Shungu


    The purpose of this study was to investigate whether CFS patients without comorbid psychiatric diagnoses differ from CFS patients with comorbid psychiatric diagnoses and healthy control subjects in neuropsychological performance, the proportion with elevated spinal fluid protein or white cell counts, cerebral blood flow (CBF), brain ventricular lactate and cortical glutathione (GSH).

    The results of the study did not show any differences in any of the outcome measures between CFS patients with and without psychiatric comorbidity, thus indicating that psychiatric status may not be an exacerbating factor in CFS.

    Importantly, significant differences were found between the pooled samples of CFS compared to controls.

    These included lower GSH and CBF and higher ventricular lactate and rates of spinal fluid abnormalities in CFS patients compared to healthy controls.

    Thirteen of 26 patients had abnormal values on two or more of these 4 brain-related variables.

    These findings, which replicate the results of several of our prior studies, support the presence of a number of neurobiological and spinal fluid abnormalities in CFS.

    These results will lead to further investigation into objective biomarkers of the disorder to advance the understanding of CFS.

    Highlights

    As a group, CFS patients have higher brain ventricular lactate, more abnormal spinal fluid results, lower brain GSH, and reduced cerebral blood flow relative to healthy sedentary controls

    Psychiatric comorbidity does not influence any of these potential biological markers of CFS

    50% of the patients had more than one of these abnormalities

    The subgroup of patients with brain abnormalities may have an underlying encephalopathy producing their illness


    This research was supported by NIH grant NS-075653 to BHN.
     
  2. duncan

    duncan Senior Member

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    Or an underlying illness producing their encephalopathy.
     
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  3. Kati

    Kati Patient in training

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    Proofs of physical illness are increasing drastically and yet the usual suspects (Wessely, Sharpe, Crawley, White and friends) are still at it. Science will defeat them, pehaps by the end of the year.
     
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  4. Valentijn

    Valentijn Senior Member

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    This is specifically known to happen in MELAS, a genetic mitochondrial disease which produces symptoms very similar to ME. Though I wouldn't be surprised if there's other known causes as well.
     
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  5. John Mac

    John Mac Senior Member

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  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks for this previous study to the one we are discussing, you reminded me of other studies that came before Ben Natelson et al's work that could help bolster it:

    Namely back in 2009:

    And then 2010:



    So I make that four studies from three different research groups, regarding brain lactate?
    Two from Natelson et al (2012, 2017), and one from Matthew et al (2009), and one from Murrough et al (2010) that demonstrate elevated lactate in the spinal fluid/brain of CFS patients.


    I hope Ron Davis is aware of this research as it could tie in precisely with his groups and allied groups findings that
    the brain is going to get totally smashed by being so energy deficient.

    Also if you knock the GSH out of your brain as the latest Natelson et al paper shows, it'll likely to age faster, and we've seen signs of brain abnormalities on scans before:

    Such as this from last year:

     
  7. Mohawk1995

    Mohawk1995 Senior Member

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    Exactly! Just because there are issues with brain biochemistry and neuro-physiology does not mean there is a psychiatric disorder. An "adjustment issue" related to having one of the most devastating diseases on planet earth...of course, but not a medical condition created by a psychiatric disorder. It appears that even if there is a psychiatric comorbidity it may have no greater influence on the person with CFS than if they did not have it.
     
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  8. Yabisa

    Yabisa

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    This could be a strong proof for those who believe this is "somathic".
    It's our time to refuse and condemn the idea of somatic illness.
    Not because medicine can't explain what we have, it does mean all is in our mind.
     
  9. Cohen2

    Cohen2 Senior Member

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    Is there any way to check whether you might have MELAS through 23Andme results?
     
  10. Dolphin

    Dolphin Senior Member

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    Somatic = of the body/relating to the body (rather than, say, the mind).

    So if somebody says it is a somatic illness that is not usually a problem.
     
    Last edited: Mar 1, 2017
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  11. Dolphin

    Dolphin Senior Member

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    The mean SF 36 physical functioning scores of the healthy, sedentary controls was 99.4 out of 100.
    PACE used a threshold of 60+ for recovery.
     
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  12. Dolphin

    Dolphin Senior Member

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  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    From memory 23and ME isn't DNA sequencing but genotyping. Also they only look at part of your genes, not all, hence the cost is low. I think last year the first DNA sequencing tests came out, but they're around $1,000+? Also those tests don't show you if you 'have it' - a disease. At best, they show if you carry the gene for it, which is not a diagnostic tool.

    If you had MELAS you'd have a rare form of dementia that can be diagnosed using biopsies:
    http://www.medicinenet.com/melas_syndrome/article.htm#what_are_the_symptoms_of_melas

    Although I believe science will show in the next few years, that severe ME lasting many decades will increase your chances of developing dementia (or share actual components of the causes of some dementia states - e.g certain infections or prions) we know that ME isn't currently known to be 'a' dementia state like MELAS even if it may share some components not yet agreed upon - such as high lactic acid.

    The cruel thing is, without taking a dremel tool to ME CFS patients deceased bodies decades ago, no one has much knowledge - currently. For example how many of us on this forum have had a brain or a muscle biopsy? Or worse, how many people do we know who lost their lives to ME CFS have these tests on autopsy after their passing?

    The knowledge we have is so poor, hence it's so easy to deny the legitimacy of our claims to relentless suffering, through blocking appropriate levels of research funding that would have given us much better knowledge than we currently have. Collectively, as patients, we know more than your average GP about our condition on a research level, on a mental health level and on a physical level. As they went to medical school and we didn't but we depend on them to stay alive - this is somewhat worrying...
     
  14. Yabisa

    Yabisa

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  15. Valentijn

    Valentijn Senior Member

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    They miss the most common SNP to cause it, and also would miss any deletions or repeats which can cause it. Mine is A3796G (rs28357970) on MT-DN1. 23andMe hides it with one of their "i" numbers, i3002114. I started a list of other mutations causing mitochondrial disease, and plan to get back to working on that soon :p

    Diagnosis of MELAS would primarily be through muscle biopsy. It can also be diagnosed through genetic sequencing of the mitochondria, but often must come from the affected tissue to show the relevant mutation. Due to heteroplasmy, it's very likely that saliva and blood won't contain the mutation, but the muscles will. Measurement of lactate in the CSF can also be part of the diagnostic process, and intermittent elevations of blood lactate also support a diagnosis.

    This isn't true at all. People having repeated stroke-like episodes can certainly end up with severe neurological problems, but dementia or any other specific symptom is not required for diagnosis. That site seems to be of very poor quality, and they're listing some "symptoms" which are actually "signs".

    Mitochondrial disease is primarily diagnosed genetically or via biopsy of the affected tissue. Due to the way mitochondrial diseases are passed on from the mother to the fetus, most tissues can lack the mutation at birth. The mutated cells can spread however, and take over a specific type of tissue. A common manifestation is in the eyes (LHON), and another features deafness & diabetes (MIDD). Dystonia can be caused as well.

    MELAS is just another cluster of mitochondrial disease signs and symptoms, rather than a completely discrete disease itself, but where the muscles are significantly impacted. Exactly the same disease mutations can cause the different syndromes, depending on which cells are getting the bad mitochondria during fetal development.

    And exactly the same mutation can cause onset at different ages, depending on how wide-spread the mutation is in the fetus. If there's a higher load of the mutated mitochondria, it'll be very apparent at birth or soon after. But it can also take decades for the mutated mitochondria to outnumber the healthy mitochondria, take over a tissue or organ, and trigger the associated symptoms.

    The mutations can affect any part of the body, so can cause pretty much any symptom. However some symptoms are more common (or at least more commonly result in diagnosis), and some are also pretty distinctive, such as the hemiplegic episodes.
     
    Last edited: Mar 2, 2017
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  16. Cohen2

    Cohen2 Senior Member

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    @Valentijn Thanks for your response. Its a shame 23andMe miss the related SNPs. I wonder how many people diagnosed with ME have mitochondrial diseases, as you say they can appear after childhood and seems that they may not be that easy to diagnose. Thats great that your compiling a list of mutations causing mitochondrial disease.

    Im getting my mitochondria tested in a study im in. Im not sure exactly what theyre looking at yet but hopefully they find something. I have had at least three hemeplegic like episodes.
     
  17. alex3619

    alex3619 Senior Member

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    Somatic=body=physical
    Psycho-somatic is about mind causing physical.
    Its easy to get these terms confused.

    I completely refuse to accept the notion of any psychosomatic illness until they have some tangible evidence.
     
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  18. Yabisa

    Yabisa

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    Neither do I.
    I think "something" is affecting our body and this reacts with high inmunological response that affects ( among others ) nervous s.
    As most neorological illness, our nervous sistem is malfuncioning and this biological impair translate in behaviour : slow, confused, cognitive impair, etc.
     
  19. Snow Leopard

    Snow Leopard Hibernating

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    I think this is the fourth study from Shungu too.

    It would be interesting to ask Natelson and Shungu to what these studies mean in terms of treatments.
     
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  20. Dolphin

    Dolphin Senior Member

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    This was presented at the last IACFS/ME conference by them:

     

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