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"Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia... van Campen et al, 2020

Discussion in 'ME/CFS research' started by Denise, Feb 10, 2020.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Reassuring to see rigour like this:
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Although they were able to find a relationship between orthostatic intolerance symptoms and a reduction in cerebral blood flow, there was still a lot of variation:
    1-s2.0-S2467981X20300044-gr4_lrg.jpg

     
    Michelle, Simon M, rainy and 5 others like this.
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    No talk of deconditioning/similar in the paper that I recall
     
    Robert 1973, ukxmrv, rainy and 3 others like this.
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    This is just spelling out the corollary of the findings:
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Michelle, Simon M and Ravn like this.
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The abstract doesn't mention the hypocapnia (reduction in carbon dioxide) that was found:

    Tilt table test data of ME-CFS participants and healthy controls.JPG
     
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    cerebral blood flow comparisons.png
     
  9. Sid

    Sid Senior Member (Voting Rights)

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    The study mentions this elephant in the room (hypocapnia when upright but not when supine) but does not discuss it or its implications as far as I can see.

     
    Michelle, ScottTriGuy and ukxmrv like this.
  10. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

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    There's prior research suggesting it can't be blamed solely on hypocapnia. CBF disruption occurs first, the hypocapnia follows and reinforces it. You also don't get the same symptoms from voluntary hyperventilation.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016155/
     
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  11. Sid

    Sid Senior Member (Voting Rights)

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    I'm aware, I wasn't suggesting hyperventilation. Still, it's a significant finding which should be investigated IMO. Why is it happening only upright?
     
    Michelle likes this.
  12. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

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    Commonly held view is that orthostasis results in central hypovolemia, particularly if there's neuropathic factors contributing to that. Knock-on effects lead to respiratory activation.

    Various other reasons for hypocapnia are possible, hyperventilation features in mito disease and other myopathies for example. But I guess the focus is on mechanical changes due to it being reliably triggered on standing.
     
    Michelle and Sid like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I think this study is really important. I often wondered why researchers weren’t looking into this. I don’t know of any other conditions (except perhaps PoTS alone - and even then, not to the extent of ME and PoTS together), where patients have to continuously be lying flat and feel absolutely dreadful when upright even just a few seconds or a minute upright for those with severe ME. It stops you from doing anything at all. I’ve never heard of it even for example in the most severest lupus or severest autoimmune conditions on the forums I went on a few years ago. Someone I knew who was very very sick, terminally ill, only had to lie flat in the last few weeks of her life.

    But why could this be happening to us for ME? @Ryan31337 when you say being upright causes central hypovolemia, does that mean the brain is not getting enough of a volume of blood? And why could this happen - what do you mean by mechanical changes?

    and I also wonder - are there not medicines to help bring more blood back to the brain?
     
    Sarah94 likes this.
  15. duncan

    duncan Senior Member (Voting Rights)

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    This may or may not be relevant, but my low CO2 was attributed to hyperventilation by at least two prominent ME/CFS researchers. Both offered me the services of a breathing coach. I declined.
     
    Last edited: Feb 17, 2020
    Inara, dangermouse, ukxmrv and 2 others like this.
  16. Sid

    Sid Senior Member (Voting Rights)

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    That's disturbing. I know someone who got told orthostatic symptoms were due to 'fear of standing'.
     
    dangermouse, rainy, Amw66 and 4 others like this.
  17. NelliePledge

    NelliePledge Moderator Staff Member

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    Why am I not shocked :wtf::wtf: :wtf::wtf::wtf:

    these people are disgusting - what will it take to shake them out of their smug superiority complex mindset
     
    dangermouse, rainy, rvallee and 2 others like this.
  18. Denise

    Denise Senior Member (Voting Rights)

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    Gee....why am I afraid of standing? Maybe because when I do so I faint? NAH! Couldn't be.


    Misdiagnosis of anxiety instead of OI is far too common!
    I hope this study helps end this mistreatment!
     
    dangermouse, duncan, rvallee and 4 others like this.
  19. Mij

    Mij Senior Member (Voting Rights)

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    Unfortunately this applies to women's heart disease as well.
     
    dangermouse, duncan, rvallee and 3 others like this.
  20. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That's terrible. I hope it wasn't one of the good guys.
     
    dangermouse, duncan and ukxmrv like this.

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