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Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 29, 2013.

  1. alex3619

    alex3619 Senior Member

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  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This is interesting. I have never had severe hyponatraemia. I don't know if I have had mild hyponatraemia.

    I have had two filling replaced this spring. X-rays show that another is deteriorating. I was diagnosed with osteoporosis.
  3. Valentijn

    Valentijn Activity Level: 3

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    Heart rate has been a huge help to me too. I use a pulse oximeter since it's small and easy to take with me (it even came with a carrying pouch to go around my neck).
    rosie26 likes this.
  4. MeSci

    MeSci Activity level: 6

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    Standard general-health blood tests in the UK include blood sodium, and I would guess that this would be the case elsewhere. Can you see if you have more results for this? If not, you could ask for a test. In the UK I would expect patients to be told if their blood sodium was worryingly, or consistently, low.

    But maybe different people are prone to deficiency in different minerals. Lactic acid can also be excreted as a salt of potassium, for example.
    alex3619 likes this.
  5. SOC

    SOC Back to work (easy, part-time work)

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    I use a pulse oximeter now, too. When I was going over my AT walking across the room, I wore a chest belt HR monitor because I needed to watch every little activity to avoid going over my AT. Now I only need to check occasionally during the day.
    Valentijn likes this.
  6. pamb

    pamb Senior Member

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    Hi Peggy Sue,
    Thanks for sharing this interesting bit of information, that the longer your illness goes, the longer the delay before PEM hits. My husband has been ill for 13 years now and we've seen so many symptom changes over the years I've lost track. But, I had never considered PEM delayed longer than 2 days. We'll start watching and see if we are able to note a similar pattern. I can see it may be tricky as there as so many opportunities in a week to over due it.

    Pam and John
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  7. urbantravels

    urbantravels disjecta membra

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    Sodium is part of the standard electrolyte panel. Everybody gets this as part of a routine physical. I'm usually at the low end of the normal range on sodium, occasionally a point or two below the normal range, but nothing worrying. A truly low value is definitely something that would be treated, in anyone.
    SOC likes this.
  8. Ember

    Ember Senior Member

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    According to Jennie Spotila, Dr. Dan Peterson offers IV saline to help patients recover from exercise testing:
    Perhaps this CPET support will become standard procedure.
  9. MeSci

    MeSci Activity level: 6

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    OK. Hopefully in the US they have a better idea of how to treat it than here in the UK, where they have no clue about how to assess a person's hydration status and are therefore prepared to restrict fluids in an already-dehydrated patient!
  10. MeSci

    MeSci Activity level: 6

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    That's interesting, Ember. Presumably he checks people's sodium and fluid levels first? This may seem a silly question, but in the UK doctors often do very silly things!
  11. peggy-sue

    peggy-sue

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    Reporting on my current status, after my very busy holiday catching up with family and friends (24th-29th of July).
    Today being 5th August, I noticed yesterday that somebody has turned the gravity up. I think payback is starting. I have wet washing in the machine, but have ignored it for 2 days - I am clearly "catastrophising" ;) - or in other words, my guts are telling me that hanging it up will be a really big job of overdoings.
    That's a delay of 6 days since I got home.
  12. Ember

    Ember Senior Member

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    Gene expression isn't available as a clinical test at this point, but you may find Dr. Bateman's discussion of the Light AR, Bateman L, Jo D, et al. (2012) study interesting (5:00 – 18:00). Dr. Bateman discusses individual patient responses, attributing the low-level results of one of her patients in her 60s to her being a master of pacing and good health practices.

    The initial study by the Drs. Light highlights the comparison with MS controls:
    Dr. Bateman suggests test combining and says that serial CPET testing “is hopefully going to be a signature of this illness as well.”
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  13. Snowdrop

    Snowdrop Senior Member

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    This is my situation also. This is the first I've heard mention of the longer than 2 days PEM delay but I've come to realise that for me it's more like 4-5 days. Again, I'm not as alone as I thought.
    SD
  14. SOC

    SOC Back to work (easy, part-time work)

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    By the time I started paying attention to PEM -- about 4 years after the initial flu-like illness -- I was having about a 4-5 day delay before PEM. I'm starting to think the 3-5 day delay is more common that is currently believed.
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  15. MeSci

    MeSci Activity level: 6

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    That's perhaps the opposite to what I have found. I said earlier in this thread that after I made appropriate changes to diet and supplements my PEM became more delayed (and almost imperceptible). It was hard to be sure as it had become so mild, but the delay seemed to have increased to about a week, from an initial two days.
    peggy-sue likes this.
  16. peggy-sue

    peggy-sue

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    I first read an article by the Dr. David Smith who has his own pet theory about ME?CFS quite early on in my internet trawlings to find out more about what the heck was wrong with me.

    He's the chap who reckons it can be cured by mixing SSRIs and Tricyclics (officially contraindicated because of the risk of heart failure).

    But his website had an article on pacing and how to calculate payback.
    I wasn't neccessarily going to believe it.
    I had read and dismissed a lot of garbage on the net (LP, Mickel, Reverse etc.)

    But it did give me something to watch and observe, see if that was what did happen.


    His "calculation" was that;

    For every year you have been ill, PEM will delay by another day.

    For every year you have been ill, the PEM will last that number of days
    times the lenght of time you spent overdoing yourself.

    so, for example,

    a 2 week bout of 'flu after 6 years of being ill will give rise to payback of

    14 x 6 days, (3 months) delayed by 6 days from the end of the 'flu.

    I am not sure if it carries on getting delayed much after a week.... I have not observed that at all.

    I've been sick 11years, my last big bout was still only delayed by 6 days.

    I'm still getting over it - it was a very big and lengthy overdoing, in unbearable heat.

    (but it was such a good time I had;
    full of fun and laughs and confidences... and most important of all, love.:love: )
  17. MeSci

    MeSci Activity level: 6

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    I'm glad you had some fun, peggy-sue

    But that David Smith stuff sounds like BS to me. (Bad Science :lol:)

    I took an SSRI and a tricyclic at the start of my ME and they turned me into an insomniac zombie unable to speak or swallow properly and with numbness in my hands which made it hard to use them. When I stopped them both I seemed to come alive again, once more aware of the beauty of nature, which I had become oblivious to and which had always been a source of pleasure for me, and one of the few things that I could still enjoy after becoming ill. All pleasure had been numbed by these drugs.

    A lot of us don't get colds or flu. I still did in the early stages, and actually felt relatively well when I had them. I appear to have been immune to them for many years now.

    It can be confusing when a website or other source has some good info/advice and also some BS. If you know one or more things to be correct, you may tend to assume that the rest is too. But it ain't necessarily so...(Cue music).
  18. peggy-sue

    peggy-sue

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    "It can be confusing when a website or other source has some good info/advice and also some BS. If you know one or more things to be correct, you may tend to assume that the rest is too. But it ain't necessarily so...(Cue music)."

    Exactly, MeSci.

    But his website was the first thing I found on the internet which had any pacing advice at all.

    I could see the rest was BS, same as I read up about LP and Mickel and Reverse, and dismissed them as BPS -
    (Bad Pseudo Science:p)

    This was before I found any ME forums.

    Pacing made sense, so I started applying pacing principles. They helped. A lot.


    I don't get colds or 'flu often either. I felt what he said about that was daft.
    apologies for using 'flu as an example of an overdoing!:redface:
    Valentijn likes this.
  19. alex3619

    alex3619 Senior Member

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    :lol:
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  20. SOC

    SOC Back to work (easy, part-time work)

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    I wonder if it might be related to OI issues compared to energy production issues. Both could cause PEM, but on different time scales.

    In my case, PEM occurred about 4 days after exertion in the time before I had any OI symptoms. As OI developed, the PEM delay got shorter and shorter. Since I've been treating OI, my PEM delay has lengthened again, although that may not be as certain since management has helped me to mostly avoid significant PEM over the past few years. It's hard to know for sure what's going on with such a small amount of data.

    It might be interesting if researchers doing 2 day CPET also recorded when post-test PEM hit their "victims". ;)
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