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Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation

Discussion in 'Latest ME/CFS Research' started by RogerBlack, May 30, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    http://tandfonline.com/doi/abs/10.1080/10833196.2017.1327131
    Lots more study needs to be done on this.
    Anyone up for funding me to go to the ISS to try and see what a difference it makes?

    Getting flat certainly helps with cognitive symptoms in me.

    Someone needs to properly study the spectrum of severity between housebound and 'can get to the toilet on their own from bed'.

    Tricky, when what you really want to do is something like visit people, and do cerebral ultrasounds (AIUI there is no simple way of measuring cerebral bloodflow) and brain oxygenation tests.
     
    Last edited: May 30, 2017
  2. Gemini

    Gemini Senior Member

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    @RogerBlack, do you have a citation for this paper by chance?

    Always felt gravity was involved...

    Lying flat for as little as 20 minutes relieves pain & other symptoms for me....
     
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  3. RogerBlack

    RogerBlack Senior Member

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    Oops - added.
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Maybe I'm reading this wrong, but is it implying that orthostatic intolerance is caused from prolonged periods of horizontalness?
     
  5. RogerBlack

    RogerBlack Senior Member

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    Yes.
    In at least subgroups of patients.
    This doesn't seem to be a completely ridiculous idea. It could also be that CFS makes this more likely to happen.

    It's very clearly not the only thing going on.
     
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  6. lafarfelue

    lafarfelue Senior Member

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    Huh. That would be interesting to research. I feel I exhibited symptoms of POTS before any noticeable symptoms for ME/CFS. And by that I mean that it wouldn't appear that lying down a lot contributed to my POTS. Curious!
     
  7. Alvin2

    Alvin2 If humans were rational...

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    I'm not with it enough to understand what is being said but i don't think putting ME/CFS patients into outer space will make the condition go away. In fact i will bet money on it. :woot:
     
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  8. Kati

    Kati Patient in training

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    Which came first, the chicken or the egg?

    i remember vividly when I started having orthostatic intolerance. It was not due to me laying down. It is as if something had snapped inside of me.
     
    Last edited: Jun 1, 2017
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  9. rosie26

    rosie26 Senior Member

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    Same with me.
     
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  10. Mel9

    Mel9 Senior Member

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    It"s worth a try
     
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  11. trishrhymes

    trishrhymes Senior Member

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    I've only read the abstract, so I'm not sure whether I'm getting this right.

    I saw a program ages ago about a healthy young man who had volunteered to lie flat in bed for 8 weeks (I think) at NASA research centre so they could tests the effects on him physiologically to mimic the effects of lack of gravity. At the end of the 8 weeks they showed him trying to stand up, and I think did a tilt table test on him and he had pretty severe orthostatic intolerance. After a few days of gradually getting used to sitting then standing he was fine, and returned to full health and physical fitness within a few weeks.

    The reason I spell this out is that it struck me at the time that one of the factors contributing to the difficulty of people after prolonged bed rest sitting and standing up again might be this same problem - not related to muscle weakness or deconditioning.

    I think what this paper is pointing out is that lots of people with ME have low blood volume and OI/POTS as part of their ME, and that therefore the effect of prolonged bed rest will be even greater in ME than in healthy people, a sort of double dose of OI.

    I think they are probably saying that treating the effects of lack of gravity may help severe bedbound ME patients, not in any way curing their ME, but reducing the additional problems caused by the heart getting used to not having to push blood so hard against gravity.

    From what I've read, I think 2 things may help with this - salt and fluids to increase blood volume, and raising the head of the bed a little, so that even when lying down, the heart still has to push against gravity a bit.

    Sending us into space would make the situation worse, in the same way that bed rest does.

    Has anyone had access to the full paper?
     
  12. TrixieStix

    TrixieStix Senior Member

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    I believe the paper is saying the opposite though right?. That the lack of being exposed to normal amounts of gravitational forces on the body thru normal day to day movement, and activities is having a negative impact.

    Inactivity and prolonged bed rest are unnatural states of the human body. They are bound to be consequences.

    For example: The following cardiovascular changes happen within 24Hours of bed rest....

    Increase in Resting Heart Rate (4-15 beats within the first 3-4 weeks then plateaus off)
    Decrease in Blood Volume (5% in 24 hours, 10% in 6 days, 20% in 14 days)
     
  13. RogerBlack

    RogerBlack Senior Member

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    'Make the condition go away' - perhaps not.
    In principle make people with severe POTS-related symptoms better, to at least a degree - yes.

    If you're not suffering from POTS when active, you can do much more.

    It's clearly not a factor very early in the disease.
    But, treating POTS could at least help somewhat. At least part of the effort of day-day life is struggling through POTS symptoms.
    (perhaps not actual clinical POTS).
    By that, I mean that at least a notable subset of people find tasks, from talking to people to complex tasks easier when sitting or lying.
    Even if you can't otherwise improve their condition, being able to make it so you can do as much standing up as you can do lying down would be enormously valuable.
     
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  14. anniekim

    anniekim Senior Member

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    My OI came on suddenly seven years ago after a short walk when I had been mostly housebound, the walk was too much activity for me. I then became fully bedridden four years ago. I can transfer to a chemical toilet by my bed but no further. I have no doubt I have secondary deconditioning from four years in bed and my orthostatic intolerance which I had before having to be flat is exacerbated even further. However, until there is treatment for the underlying pathology which is what made me bedridden in the first place I cannot address any secondary deconditioning.

    I am unimpressed with the suggestion in this paper that deconditoning is the main cause that keeps the severely affected patients bedridden. Even if my OI was marginally improved it is not the only reason my body is too weak to be out of bed. Many dysfunctional body systems contribute to a person with ME being bedridden.
     
    Last edited: May 31, 2017
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  15. Effi

    Effi Senior Member

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    I had OI before I even knew I had ME, before I even knew what OI/ME was. I didn't know I had anything, just that I was feeling really awful, all the time. From what I have learned about OI over the years, I now know I already had it months before becoming homebound.

    I am very unimpressed with this study. It sounds like a fancy wrapper for deconditioning BS.
     
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  16. Sean

    Sean Senior Member

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    It would be interesting to see how weightlessness affects people who already have ME/CFS.
     
  17. RogerBlack

    RogerBlack Senior Member

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    If arguments are made around the paper that OI is the 'real' problem instigating CFS I wholeheartedly reject them.

    There seems to be the risk of such arguments being made.

    The rather narrower claim that (increased) OI as a result of bed rest is a factor in worsening the disability felt by a subset of CFS patients seems reasonable.

    (the alternative would be CFS induced OI 'protects' from additional bed-rest OI, which seems odd).

    An effective treatment for OI alone would help modestly many people.
     
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  18. Neunistiva

    Neunistiva Senior Member

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    That's how I read it too.

    And at least in my case, it's not true. I've been bedridden (with getting up exactly once a day to go to the toilet) for 3 years now. My OI was slowly getting worse all this time (upon standing up I would get tachycardia, PVCs and feel nauseous), and then several weeks ago it cleared up. This coincided with starting to take large doses (3000 IU daily) of vitamin D but it could be a coincidence.

    Anyway, after 3 years of being bedridden 99,99% of the time, I don't have OI anymore, while my general health has not improved one bit.
     
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  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  20. lansbergen

    lansbergen Senior Member

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    Not have to carry all the weight might ease symptoms.
     
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