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Is PEM only found in cfs?

Discussion in 'General ME/CFS Discussion' started by knackers323, Dec 6, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Good explanation! :)

    Like "It's (probably) a virus." That too is a common one for doctors to spout when they don't know what's wrong.
     
    SickOfSickness likes this.
  2. anniekim

    anniekim Senior Member

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    Physical, mental and emotional exertion above my limits all cause a crash in me. Emotional exertion can be the hardest as hard to control stress at times. My beloved dad die died unexpectedly 22 months ago, the stress and shock caused a further deterioration in my health
     
  3. twilightsun

    twilightsun

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    Oh no, it wasn't like that. He's very mind/body oriented, and the comment was meant to suggest he was glad that my primary care doc figured out I needed some ibuprofen to kill the inflammation (since the acetaminophen I'd been trying didn't touch it) - but telling me I had costochondritis didn't provide any answers as to why my rib cage randomly decided to become inflamed, when I'd never experienced anything like that before.

    I mean, the good thing was that having that label for it helped me know just what to do the next time I had chest pain like that - pop some ibuprofen and not immediately freak out about having an early heart attack - but I don't know why it happens now or if there is anything I can do to prevent it.
     
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  4. twilightsun

    twilightsun

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    I'm sorry about your father's death. We found out my dad's cancer came back this summer, and my health took a downturn after his two close calls where we almost lost him again. I don't want to think about the inevitable. How are you coping now? I know that sort of emotional pain doesn't just go away.
     
  5. knackers323

    knackers323 Senior Member

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    Done. Lets see if I get a response
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Does anyone else have no idea who Dick Smith is?
     
  7. anniekim

    anniekim Senior Member

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    Thanks Twilight. I'm so sorry to hear about your dad. It does feel less raw now, but of course I miss him and his love and care. I am very close to my mum and together we love to talk about him and remember what he meant to us. Sending you love

    PS I realise after writing the above you may also be asking me how I am coping physically. unfortunately, my health hasn't improved and I 've been totally bedridden for the last year. This would have made my dad sad as he so wanted me to improve not get worse
     
  8. Allyson

    Allyson *****

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    yes I agree - I think it is a good question but needs more testing ; PEM is also found in Ehlers-Danlos Syndrome and, I think, POTS

    good issue to debate and research IMO


    Ally
     
    barbc56 likes this.
  9. alex3619

    alex3619 Senior Member

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    MeSci likes this.
  10. aimossy

    aimossy Senior Member

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    and here dick smith electronics lol.:) but I think that's closed down now.
     
    rosie26 likes this.
  11. rosie26

    rosie26 Senior Member

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    There's a Dick Smith Electronic's store just down the road from me :)
     
    Last edited: Dec 10, 2013
  12. Tristen

    Tristen Senior Member

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    I would get an exacerbation of symptoms (PEM), following physical or mental exertion. Also with, catching a new infection like the flu,....also with exposure to heat (had to stop one of my favorites, hot tubs).
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Immersion in hot water is horrible. Even for normal people it raises heart rate considerably, which we just can't handle. My heart rate would get to 150+ after a relaxing bath :wide-eyed: And it would take hours to get near normal again, sometimes several days.

    I do showers now, with a bath stool from Ikea. It's still a difficult activity, but way less debilitating.
     
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  14. waiting

    waiting Senior Member

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    @alex3619, Yes, Workwell's 2-day CPET has been replicated, by at least 2 other researchers -- Betsy Keller in Ithaca, New York -- and I believe the other is Vermeulen from The Netherlands (see IACFS/ME Primer -- reference #23:

    "Vermeulen RC, et al. Patients with chronic fa-tigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity. J Transl Med. 2010 Oct 11; 8:93."
     
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  15. alex3619

    alex3619 Senior Member

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    The 2 day CPET needs to be replicated with high specificity and selectivity.

    The Vermeulen paper only had 15 subjects and 15 controls. I think that is too small. Its focus was also different - they were looking for oxidative phosphorylation problems.

    The Betsy Keller study is discussed here:
    http://www.cortjohnson.org/blog/201...er-exercise-testing-chronic-fatigue-syndrome/

    I don't think her paper is published yet. It appears to be a large enough cohort to have some impact.

    None of these studies can be double blinded. Like in psychopsychiatry its impossible for patients to not be very aware of what testing (usually treatment in psychopsychiatry, eg. CBT or GET) they are receiving. In any case unlike psychopsychiatry the CPET is a 50+ year old test, objective, well known and understood. Its objective, and probably from extremely hard to impossible to fake.

    We usually don't have the money or resources to properly replicate findings. The 2 day CPET is too important to let it sit in limbo in my opinion.

    When Betsy Keller publishes (I didn't find it, if anyone has a link please let me know) then we can begin pushing this issue.

    There are also numerous patient tests from various doctors. I wish these could be combined in a database, like at the Open Medical Institute or something. That might also assemble enough data to make an impact when published.
     
    Last edited: Dec 11, 2013
  16. bertiedog

    bertiedog Senior Member

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    This oxygen thing is so relevant I feel. Since breathing oxygen from my concentrator it has made a huge difference to me and I can almost avoid the next day feeling of being unwell. If I know I have done a bit too much walking and I get to feel exhausted I know this is bad so will use my concentrator for up to an hour whereas if it is a more normal day I will only use it for 1/2 hour.

    By doing this as mentioned I would say that I no longer have post exertional malaise, at least not the next day it will be much more immediate. It comes on straight away from doing too much and might stay that way during that evening but after a night's sleep then I will still feel tired first thing but after having something to eat and using the concentrator for an hour I will start to feel better. Probably a bit stiff and tired but if I actually get on and start doing something physical I will feel better and not worse.

    This didn't happen before getting the oxygen concentrator 18 months's ago. I would feel awful the next day and unable to do much at all so our inability to exercise or to exercise for a limited time (say 30 minutes maximum in my case) is key to our problems I think.

    BTW Taking 3000 mcg of a transdermal B12 spray which Dr Myhill says is Cynacobalamin has made a big difference to me being able to do physical stuff for longer so I also see a connection to a B12 deficiency for some of us.

    Pam
     
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  17. bertiedog

    bertiedog Senior Member

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    I have had a demonstrable test on my Autonomic Functioning at the Breakspear private hospital in the UK that showed when my body was stressed just by taking 6 deep breaths over one minute, after lying down and relaxing for 10 minutes, the oxygen in my cells was under 50% of what a normal person's should be. It was after that test that I was told to breathe oxygen for up to 3 times daily and also that I would notice a big difference. That was so true. Details of this test are on the Breakspear's website I believe.

    Pam
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I was a bit surprised by the claim in the Vermeulen paper that

    I don't know whether plasma CK is a reliable measure for oxidative phosphorylation. The authors justify its use thus:

    Seems a bit odd to me, although I am not an expert in such things. AFAIK decreased oxidative phosphorylation is a common finding in ME/CFS.
     
    alex3619 likes this.
  19. Allyson

    Allyson *****

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    yes agree
    I wrote a post on this somewhere a year or so ago suggesting there may be different kids of crashes and the differenc between crashe and PEM and suggesting 4-5 ways to classify and identify them. Dyscognition is the new name for brain fog btw ! sounds much better .

    Iwill look for it and repost

    Ally
     
    SickOfSickness likes this.
  20. Izola

    Izola Senior Member

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    for some of us there need not be a second test. I have known people who almost immediately go into anaerobic mode. I was tested almost 20 yrs ago long before I totally disabled. Far less than a minute I was in anaerobic mode.

    The CPET test results are a marker of a disease state and with ours, a unique disease state. I would like to see the results of people with various diseases to show whether any other disease has this definite of a marker. Post exertion relapse is not the same as being exhausted tired after a big day doing a lot of stuff.

    On the second day of testing, I would have to be dug out from under my covers and hand carried to the testing site. I certainly would not reject the second day test--just that my body would be kicking and screaming all the way there. Oops. I forgot, my body can't kick.
     
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