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A brain MRI Study of CFS: Evidence of brainstem dysfunction & altered homeostasis

Discussion in 'Latest ME/CFS Research' started by Glynis Steele, Mar 2, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    I just seen the thread again. Yes they did send me my study results from the MRI, SPECT etc but as i said.. I was part of their study WAY back (so they must be taken AGES to do these studies and get them published). My results of my tests they didnt send for a very long time, many many months (I'd almost given up getting them when they suddenly came by the post).

    Im still confused which study of theirs I was in.. I dont think it is that original study? as the numbers are lower then the numbers of partipants they were trying to get for the one I was in (unless they had trouble getting the number so went with less???). I remember the number 60 participants I think? (was that 30 controls and 30 ME or 60 each group? bad memory.. maybe I was in the original one?? maybe they used 10 less) They had some very sick ones of us in that study... I was much worst then (it was back in the time when I had trouble just sitting without collapse and had to nap every day) and the other partipant who was there when I was, she was too sick to drive herself there too and had been brought along by another as well. She looked quite sick and like she probably should of been in bed too, we both were unsteady on our feet.

    Is there anywhere on that published study in which it says what year they actually started doing the study??? so I can look it up with when I had my study tests done and know?

    IF I was in their second one? and not the original.. I assume they may publish a second one close after the first as as I said it was quite a time ago.. years, I dont understand why it wouldnt be finished by now.
    ................

    I just looked up when I was part of the Dr Burnets study done in conjuction with the others, the MRI etc etc ME/CFS study. My SPECT was done for it July 2007. original study then???
  2. taniaaust1

    taniaaust1 Senior Member

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    No idea if mine has normalised or not.. It was still spiking at times 6mths ago, I took it using anothers BP monitor and found I was having a spike (I dont have a BP monitor so dont know if it still does it now). I have a GP who isnt interested in such things at all and wont take it while Im standing so he dont see the issue, thou he did send me to immediately to the hospital from his surgery at start of the year after finding my heart rate or BP high (cant remember now which it was), it was caused by me standing up during that appointment to show him my arm then sitting down. It had normalised thou by the time the hospital put me onto its monitoring with the leads.

    As i have heart issues in my family my CFS/ME specialist dont want me on statins but wants me to keep my good cholestrol (or whatever its called) up. Statins lower both kinds and the good kind is protective. Those who dont have enough of the good kind, if they have a heart attack they apparently more likely to have a more severe one and die.

    ohh.. ive woken up on occassions feeling a bit like that, I did take my heart rate and it wasnt that which woke me up and put me on edge (over stimulated).. umm I hadnt considered it could of been my BP.
  3. Snow Leopard

    Snow Leopard Senior Member

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    They were recruiting healthy controls for the second study in April 2010.
    If you were in the CFS study (as opposed to Fibromyalgia), this is likely to be the paper. They originally submitted the paper to the Journal of the Neurological Sciences, but apparently the referees didn't understand the computational methods used. So they had to withdraw and then submit the paper to NMR in Biomedicine, which is a more specialised journal.
  4. taniaaust1

    taniaaust1 Senior Member

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    nods.. he's a rheumatoligist
  5. taniaaust1

    taniaaust1 Senior Member

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    ah thanks for explaining it :) .. You've cleared up my confusion. It must of been the original then, it was a ME/CFS study and not a fibro one.

    I'd also wondered why different journals had been mentioned. ***feeling like I know what is going on now :) ***
  6. charityfundraiser

    charityfundraiser Senior Member

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    This news article is from 2010 so the published study is probably the one they were recruiting for.

  7. Cort

    Cort Phoenix Rising Founder

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    It looks like they are getting closer....the abnormalities are suggestive of autonomic nervous system problems, there is evidence of blood vessel problems (cerebrovascular autoregulation...) ,the hypothalamus is implicated......


    They suggest that some insult (possibly during the early stages of infection) to the midbrain essentially resets brain functioning. A kind of generic insult makes sense given all the different pathogen triggers for ME/CFS that have been shown (and now SARS). This is similar to the 'sickness behavior' theory which posits that immune activation in the brain continues long after it should have been shut off.
  8. Cort

    Cort Phoenix Rising Founder

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    It looks like they are getting closer....the abnormalities are suggestive of autonomic nervous system problems, there is evidence of blood vessel problems (cerebrovascular autoregulation...) ,the hypothalamus is implicated......


    They suggest that some insult (possibly during the early stages of infection) to the midbrain essentially resets brain functioning. A kind of generic insult makes sense given all the different pathogen triggers for ME/CFS that have been shown (and now SARS). This is similar to the 'sickness behavior' theory which posits that immune activation in the brain continues long after it should have been shut off.
  9. Wayne

    Wayne Senior Member

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    Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

    I feel I was able to improve my own brainstem dysfunction by having a structural procedure done called Atlas Profilax. AP Practitioners claim they are able to "reposition" the uppermost cervical vertabra (atlas), which in my case led to pressure being released on my cranial nerves/brainstem.

    This procedure didn't "cure" my ME/CFS, but I noticed a number of improvements afterwards. I posted fairly extensively on my experiences on the ProHealth board in July of 2007 at the following link.

    Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

    On one of my last posts on this thread, I listed all the improvements I had noticed, and gave an approximate percentage of improvement for each.

    Best, Wayne
    Dmitri likes this.
  10. Bob

    Bob

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    Here's a list of of all the links, in case helpful:


    Published paper (11th May 2011):
    A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis
    Leighton R. Barnden, Benjamin Crouch, Richard Kwiatek, Richard Burnet, Anacleto Mernone, Steve Chryssidis, Garry Scroop, Peter Del Fante.
    Article first published online: 11 MAY 2011
    http://onlinelibrary.wiley.com/doi/10.1002/nbm.1692/abstract


    Press Release:
    http://sacfs.asn.au/news/2011/05/05...interdisciplinary_adelaide_research_group.htm
    http://sacfs.asn.au/download/CFS_BREAKTHROUGH_ADELAIDE.pdf
    http://www.mecfs-vic.org.au/ahmf-me...ugh-interdisciplinary-adelaide-research-group


    More info:
    http://sacfs.asn.au/news/2010/04/04_22_adelaide_brain_scanning_study.htm


    A second discussion thread on the same subject:
    http://forums.phoenixrising.me/showthread.php?11592-Aussie-cfs-study-MRI-scan-abnormalities
  11. ramakentesh

    ramakentesh Senior Member

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    That or the circulatory system - but I agree.
  12. Sherrie

    Sherrie

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    Yeah, you were in the original study. I finally received my results for the current repeat study, well just the MRI and SPECT results and my MRI was ok but my SPECT showed reduced blood flow in the frontal cerebral cortices and frontal temporal cortices so I'm trying to read up a bit more on it.

    ahimsa likes this.
  13. Dolphin

    Dolphin Senior Member

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    I just sent the following to the corresponding author, for what it's worth.

    (Paper found a difference between CFS/POTS and control groups on pulse pressure with orthostatic stress).

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