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Can You Come for a Visit? My ME/CFS Says No
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Similarities between ME/CFS patients and astronauts

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Emootje, Nov 1, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    Interesting.

    When my hypovolemia was at its most severe, due to it (not the cause of it) ended up having too sleep (or even when laying at times) with my head and a bit of my upper body hanging off the bed (it was the only way I could help the dizziness of not having enough blood to my head).. I also had to raise the foot end of the bed. Over time I improved to the point where I didnt need to do that any more to sleep or to cut back on symptoms. (I still do thou have hypovolemia issues).

    So if anyone is having to do the same.. dont be put off by those findings as I was doing that and improved. (I dont thou recommend doing this unless its a case of needing to do it).
    Valentijn likes this.
  2. natasa778

    natasa778 Senior Member

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    this bit is also very interesting:


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  3. natasa778

    natasa778 Senior Member

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    Why 'probably genetically based'?? I can think of dozens exogenous reasons for very deep HPA impairment, including prenatal programming of HPA function by maternal infections, stress, later infections etc. This is not to say that genetics susceptibility to those HPA dysregulators does not play a role, but that role could well be minor. NB: don't mix up genetics as a risk factor with genetics as a pathological mechanism.

    Here are some of the examples of exogenous causes for HPA impairment:


    Modelling prenatal bacterial infection: functional consequences of altered hypothalamic pituitary adrenal axis development
    Prenatal alcohol exposure: foetal programming, the hypothalamic-pituitary-adrenal axis and sex differences in outcome
    Dysfunction of the hypothalamic-pituitary-adrenal axis in HIV infection and disease
    Progressive dysregulation of autonomic and HPA axis functions in HIV-1 clade C infection in South India
    Neuroimmunoendocrine modulation in the host by helminth parasites: a novel form of host-parasite coevolution?



    further reading:

    Neuroimmunomodulation during infectious diseases: mechanisms, causes and consequences for the host

    The impact of infectious diseases upon neuroendocrine circuits
    xks201, Emootje, MishMash and 2 others like this.
  4. Emootje

    Emootje Senior Member

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    When you go from an upright position to a supine position, blood travels from your lower extremities to the central circulation, causing a "central hypervolemia". Our bodies counteract this "central hypervolemia" by producing a diuretic hormone (atrial natriuretic peptide) which causes an normalization in central blood volume at the expanse of total blood volume. This new equilibrium is just fine if you stay in a supine position but makes things worse when you stand up again. Just like the astronauts, they are fine when they are in space, back on earth the feel like shit.

    "Head-down tilt (HDT) and water immersion to the neck (WI) have been utilized to simulate the cardiovascular effects of weightlessness in humans. During both of these interventions, blood and fluid are redistributed from the caudal to the cephalic portions of the body, leading to an increased venous return. This increase in venous return induces distension of the heart and adjacent vessels, which leads to stimulation of volume and pressure receptors. Simultaneously, the release of atrial natriuretic peptide (ANP) is increased and the plasma levels of vasopressin, norepinephrine, renin, and aldosterone are decreased through neuronal pathways"
    Comparison of acute cardiovascular responses to waterimmersion and head-down tilt in humans

    But sometimes we have to choose for brain perfusion at the expanse of total blood volume...
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  5. Asklipia

    Asklipia Senior Member

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    Could this be why I feel really fine when swimming? More blood to the head? And why swimming one hour a day keeps me fine, and skipping that routine for a few days slows down my recovery?
    Would the fact that the water is colder than the body's temperature exacerbate that effect?
    Emootje likes this.
  6. Emootje

    Emootje Senior Member

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    Swimming especially in cold water causes a blood shift from the periphery to the central circulation. Maybe your vessels are to much dilated? I get worse in a cold environment and in water immersion situations. I guess we are not all the same...
  7. Asklipia

    Asklipia Senior Member

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    For me it is the reverse :
    I always felt safe in the water because in the water I was not afraid to fall and hurt myself - I see little but I now realize that that fear was not only due to bad eyesight but also very much related to a kind of instability of my feet : a nervous problem. It is only now that I am recovering that I am not afraid to fall anymore, a fear I had most of my life. So immersion for me was a blessing and still is.
    I also was suffering from cold, even from childhood. Most probably due to a thyroid problem which has now disappeared. But strangely I had fantastic results with cold. See my thread here : http://forums.phoenixrising.me/index.php?threads/bains-dérivatifs.15574/
    There is a lot now being discussed about "Cold Thermogenesis" which could explain how this works on the CNS
    http://jackkruse.com/category/cold-thermogensis/
    However nowhere are these Bains Derivatifs mentioned and from my experience with them, which is extensive, I think they work in a slightly different way.

    Now why would my vessels be too dilated? Would it show somewhere?
    Most probably which vessels are dilated and which are not depends on the sympathetic/parasympathetic alternance and this is at the heart of our problem.
    Lots of good wishes!
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  8. anne_likes_red

    anne_likes_red Senior Member

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    I've been doing a cold adaptation protocol since autumn - April here. I had to adapt Dr Kruses guidelines and pace to suit my illness. I did need a lot (!) of support with cold exposure and recovery until adapted....which took 3 - 4 weeks. After that, small improvements snowballed.
    Infrequent cold exposure can be pretty stressful. I hated the cold before and didn't do well in winter. But cold adaptation, or acclimation is different. I don't understand it all. My experience was that I just started to respond to cold differently and I had some physical changes. All good.
    At Trinity College, Dublin they're looking at immune effects of cold acclimation. http://www.tcd.ie/Biochemistry/research/r_porter.php
    There are plenty of studies to suggest cold adaptation alters immunity for the better. But the "getting adapted" part needs to be done with care.

    Anne.
  9. MishMash

    MishMash *****

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    Natasa,
    The trouble with your argument is that ME/CFS is a disease of exclusion. So presumably all of those infections and HIV can be tested for or tracked to parents. Likewise, with fetal alcohol syndrome. That can be ascertained pretty quickly. You are left with a very mysterious puzzle, when it comes to some of us.

    Many of us come from families where we have siblings who are normal, healthy, energetic. We have one parent or grandparents who exhibits either unexplained fatigue, or as has become more suggested, chronic depression. There is nobody in my family who has any of the risk factors in the studies you showed. I have four siblings. I'm the only one with this. But my mother and grandmother both had borderline cases of fatigue-like illnesses, very sensitive to smells, had IBS, difficulty sleeping etc. Both women were subject of humor about being "wanting attention" or being "eccentric".

    Frankly I haven't seen any evidence to show me that this isn't anything but a disease of genetic origin. But that is JMHO.
  10. natasa778

    natasa778 Senior Member

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    IMO it is wrong to think that because something cannot be tested for and tracked that it is not there.

    Look up transgenerational inheritance of metagenome.
  11. Emootje

    Emootje Senior Member

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    I was thinking about an excess of nitric oxide or histamine caused by an infection or by mast cell activation. I guess that flushing could be a sign of dilated vessels...
  12. GracieJ

    GracieJ Senior Member

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    SOMEBODY is studying us?? Hmmm....
  13. GracieJ

    GracieJ Senior Member

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    You guys are amazing! Following your posts is an education by itself.

    If this was answered earlier, sorry, but as I've been reading, I am wondering if anyone knows how ME/CFS people react to differences in altitude... along with all the other factors mentioned, does this play into it somewhere? I have lived at both sea level and around 4200 ft during the time I've been ill, can see no rhyme or reason in my experiences to relate it, but still wonder.

    Sorry if this is hijacking the thread somewhat, but it seems along the same lines -- similar forces..
  14. Emootje

    Emootje Senior Member

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    According to Cheney it is more a CO2 thing:

    Barometric Pressure: Another way to do it is to walk in Death Valley. Below sea level, with all the extra oxygen, you hypoventilate and that will increase CO2. [hypoventilate: breathe abnormally slow and shallow] The opposite is flying in aircraft at 10K feet, causing you to hyperventilate, so flying in airplanes is not good. CFIDS patients often feel bad when low pressure comes through their area and they ache, among other things. Low pressures are like climbing to high altitude, and you don't do as well, because you tend to hyperventilate more.
    http://www.dfwcfids.org/medical/cheney/hrt04lng.htm
  15. Valentijn

    Valentijn Activity Level: 3

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    When having OI problems, I do better then the altitude of my brain doesn't exceed the altitude of my heart :p But basically I'm always at sea level (or slightly below), so I can't give a serious answer.
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  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have lived at sea level and at fairly high altitude in the years I've been sick and haven't noticed any difference--but we all respond differently!

    Sushi
  17. Joywray

    Joywray

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    I heard there is a POTS specialty physician group in Dallas that NASA uses
    xks201 likes this.
  18. RosieBee

    RosieBee

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    Just watched Dara Obriain's Science Club on BBC1 (UK). They visited the NASA bedrest experiment explaining that the physical problems that astronauts experience from weightlessness, such as loss of bone density, can be simulated from complete horizontal bedrest for months on end. I immediately thought, they should study those people with ME who can barely raise off the horizontal (that is how it can be for me for months) - then I saw this thread. Not sure if this is the same study as one of the ones mentioned above.

    http://www.nasa.gov/exploration/humanresearch/analogs/research_info_analog-bedrest.html
    http://www.bbc.co.uk/iplayer/episode/b01p3gkg/hd/Dara_O_Briains_Science_Club_Episode_4/
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There have been more studies through cooperation between Vanderbilt's Autonomic Dysfunction Department and NASA.

    Sushi
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  20. ramakentesh

    ramakentesh Senior Member

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    That statement is - in itself - a MASSIVE assumption. Myriads of alternative explanations can be considered. The neurovascular system/endothelium as an example is highly complex and inter-related.

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