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Orthostatic symptoms predict functional capacity in CFS: implications for management

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 10, 2010.

  1. Dolphin

    Dolphin Senior Member

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    [The latest Julia Newton paper who has published interesting biomedical studies in recent years e.g. "Impaired cardiovascular response to standing in Chronic Fatigue Syndrome" http://www.imet.ie/imet_documents/Impaired CV responses to standing in CFS.pdf ]


    http://qjmed.oxfordjournals.org/cgi/content/abstract/hcq094v1?ct=ct

  2. Dolphin

    Dolphin Senior Member

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    3 quotes from the paper.
    At the end of the last quote, she specifically complains about the NICE guidelines again.

    Looks like she would be a good person to encourage to challenge the NICE guidelines next time around, either under the banner of an ME charity or other some other "banner".

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    Short comment:

    The p-value for fatigue (FIS) was p=0.063 (t=1.917).
    (The p-value for cognitive symptoms (as measured by CFQ) was p=0.792 (t=0.266).

    To me, saying fatigue was not independently associated is a bit overly definite. From p=0.05 to p=0.10 (or even p=0.13), it can be called a trend.
    taniaaust1 likes this.
  3. Resting

    Resting Senior Member

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    Thank you for this information! It makes a lot of sense. That is what my doc is aiming to help, the orthostatic symptoms. I think if he is successful in helping those symptoms then my quality of life will greatly increase.

    Having it all sorted out in the way that you did made it so much easier to follow. Thank you, thank you, thank you...
  4. Dolphin

    Dolphin Senior Member

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    Thanks for that, Resting, always nice to get thanks.

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    Last point for now:
    For anyone interested, the functional impairment scale (i.e. questionnaire) used can be seen at:

    http://aramis.stanford.edu/HAQ.html

    http://aramis.stanford.edu/downloads/PROMIS HAQ - 2007.pdf

  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I feel dumb but I have Disautonmia so I am very interested. What is it in a nutshell. Treating it helps CFS?

    I love this site, so much information.
  6. Dolphin

    Dolphin Senior Member

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    This is just questionnaire research. They are looking for correlations.

    Basically it looks like orthostatic symptoms are more a "core" part of the condition than cognitive dysfunction.

    But correlations are not causes. One may improve particular symptoms but other symptoms may remain bad as there may something that is causing both functional impairment and orthostatic symptoms (e.g. a virus, mitochondrial dysfunction, etc) that is not changed if you simply help orthostatic symptoms. So it's just questionnaire research.
  7. BEG

    BEG Senior Member

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    Resting, If you respond as well as I did to treatment, then yes, your quality of life will greatly increase. My P.O.T.S. symptoms are gone. I catch myself standing up and not suffering. Although it's easier to overdo now, PEM is not as severe and long-lasting. I can even tolerate heat without becoming deathly ill. It's a different disease; however, cognitive dysfunction has not improved. Good luck.
  8. alphahusky

    alphahusky

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    It's not that a beta blocker made my life so much better, but I do call it one of my "life saver" drugs that I would never go without (though I'm going without during this pregnancy). I cannot wait to get back on a beta blocker. I've been off almost 2 years- went off right after my daughter's birth to breastfeed her because the doctor thought my taking a beta blocker during pregnancy made her sick and breastfeeding on it would make her sicker. Turns out she has Down syndrome and that was the problem, but I went through so much hellish harassment and testing due to the beta blocker that I chose to stay off it until done with this last pregnancy. I have gotten consistently worse off of the beta blocker. My heart rate is through the roof and uneven, my blood pressure gets scary low and when I rise scarier. Somehow, this is healthier for my baby. I've gotten used to not being able to stand anymore. Not bending to pick up my 19 month old. Not being able to see after I stand because there's no blood getting to my head. Panic attacks because my heart is going tachycardic and over 110 bpm.

    I cannot WAIT to take my beta blocker again.
  9. Dolphin

    Dolphin Senior Member

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    Best of luck in the future. 2+ children (I don't know how many you have or can't remember if I should know) incl. one with Down Syndrome is quite a handful with this illness.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    My blood pressure is usually high. I think it makes treating my Disautonomia/POTS hard. I am on Benicar. I see my CFS doctor soon for some tests. Maybe she will have some answers. I HOPE SO.
  11. Dolphin

    Dolphin Senior Member

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    I know a woman who has asked me to ask about on the problem of dealing with high blood pressure in ME/CFS. She had low blood pressure and fainted when she was younger with ME/CFS (she's ill now nearly 40 years). If anyone is happy for me to post on posts, feel free to PM me (I can delete your username if you prefer).

    ME Research UK did a study which found that people with ME/CFS can get stiff arteries http://www.meresearch.org.uk/information/breakthrough/Breakthrough_Spring2008.pdf and http://www.meresearch.org.uk/research/projects/artstiffness.html which can lead on to high blood pressure as far as I know (not an expert).
  12. Sean

    Sean Senior Member

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    Thanks for those links.
  13. glenp

    glenp "and this too shall pass"

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    Ty for posting this Dolphin - the pressure sensor looks like a simple enough device. Reading all of this makes me wonder about the migraines that we get and how they might tie in. And I wonder if all with stiff vessels would have higher CRP??

    Brown eyed girl was it you that got great relief with a beta blocker?? I want to remember as will be seeing a top notch cardiologist and will ask about it.

    glen
  14. alphahusky

    alphahusky

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    I must be insane to do this, I think. And my husband now thinks he wants to try for a third child. And I'll be 43 when baby #2 is born! Wait, maybe he's the insane one!
  15. jewel

    jewel Senior Member

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    Sorry if this has been covered, but what is the core treatment for the orthostatic intolerance? Thanks, J.
  16. BEG

    BEG Senior Member

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    Hi Glen, The disparity between CFS with POTS and without is such that I still can't get over it (or put it into words, apparently). My personal experience is that I no longer get the "dead" or "road kill" feeling. Even in the midst of PEM, I don't feel as badly as I would if the POTS were untreated. I still have days when I need my power chair to get me from one end of the house to the other; my cognitive abilities are no better; pain still bothers me, but WOW! I can actually stand again. My stamina is better and my legs are gaining strength which in turn may help my very low
    VO2Max. I take 1/4 tablet of Bystolic. Good luck with the cardio doc. BEG
  17. Dolphin

    Dolphin Senior Member

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    I think you need to talk to people who have this illness with children. My general view would be that two healthy children reasonably close together are more than enough for most couples if one of them have ME/CFS.
  18. alphahusky

    alphahusky

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    I think he needs to talk to people who have this illness and children. I don't think I'll survive another pregnancy. And our daughter has Down syndrome, and while I consider her healthy, she does need extra care and I do have to deal with workers coming into my very messy house every week to work with her. They are a blessing, so is my little one, but I don't think I can do three, no. Two, don't know. One, still deciding!
  19. Dolphin

    Dolphin Senior Member

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    In case I wasn't clear, I meant "you" as in you plural i.e. between the both of you. Best of luck.
  20. Resting

    Resting Senior Member

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    That is amazing, Brown Eyed Girl!

    What was done to rid you of POTS? Heat is a really big problem for me. I can't imagine being able to tolerate it again. That would be great since I am in a location that gets really hot and humid in the summer (actually May-Sept). It has been determined that my blood is not circulating properly and therefore not reaching my brain like it needs to. I thought that if the dysautonomia were better than cognition would get better. But you are saying this is not the case. I thought there was a direct link. I guess that is what the articles in the original post are trying to convey. Goodness this illness is SO complex.

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