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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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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. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am the same. Videos are so time-consuming, and use a lot of mental energy and visual exertion. I am the same with chatty pages which take too long to get to the point. Straight facts, either in small doses or in something like a blog that I can dip in and out of, are much better for me.
     
  2. SOC

    SOC Senior Member

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    Oh yeah, that part got me, too. What am I going to cut out in order to do this wimpy bit of exercise? Taking a shower? Making a meal? I'm not fully caring for myself and my home. I'd rather spend the energy on vacuuming one carpet or making a meal than on 3 minutes of exercise for the sake of exercise. Maybe if I get well enough to do basic care for myself and my house, then I'll be more motivated to add in the exercise appropriate for PWME.

    I see the value of this kind of exercise, just not how to make it work for me where I am in the illness.
     
  3. alex3619

    alex3619 Senior Member

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    I don't know that the rest/compensation comment about exercise was in relation to their exercises, I think it was in relation to GET or similar unless I am misremembering. The point of keeping exercise to 30 seconds (NOT the Klimas 3 minutes) is to avoid any exacerbation.

    I do understand the frustration of doing limited exercise for only seconds, and having to wait to do more. I want to be back to heavy exercise, and running, and I want it now! That is the wrong thing to do though. The key feature is to get as much exercise without incurring any oxygen debt. If we start breathing hard then whatever it is is too much. Its the tortoise not the hare.
     
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  4. Nielk

    Nielk

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    Exactly! Case in point: I walked up a flight of stairs today and ended up in the emergency room! Thank God it was just a scare and I'm okay but my great struggle as I'm sure with all of you is the fact that my capabilities change all the time and fluctuate where one day I can walk up the stairs fine or go for a 10 minute walk and on other days I am much safer staying in bed. This makes it so difficult and it's hard enough to stay in one's envelope, to push that envelope is insanity!
     
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  5. Firestormm

    Firestormm Guest

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    :hug:

    And yet we do do more when we feel able and even when we don't. Especially I would say when it comes to mental exertion - which I tend now to do too much of and to the detriment of physical exertion. We can't live in a bubble and I don't think we would want to - when we have a choice of course. I still think these exercise tests are a reflection of our functional ability, and not (yet) a reflection of any disease process that might be unique to ME i.e. indicative of a biomarker which has been floated about.

    That said I haven't watched the video yet. Hope to do so later today - after my diabetes check :)
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    A single maximal exercise test is proof of impairment, but not of the cause of the impairment. It could simply reflect deconditioning, though I've only seen deconditioning shown to cause milder reductions than are seen in the "severe" group, and maybe even the "moderate" group.

    The two-day CPET results (severe worsening on the 2nd day) are unique to ME/CFS thus far. However it is possible that that's only because a two-day test has not been used in certain other diseases. But it sounds like it has been used by the same group somewhat in some similar illnesses (MS, RA?) without a similar result.

    An expected exception to this might be in the case of rhabomyolysis or mitochondrial disease, etc. But even in that case, it would likely still be a biomarker for ME/CFS, when combined with the tests which rule out those other diseases.

    And at the very least, the two-day CPET will remain a gold-standard indicator of both disease and disability.
     
    Last edited: Mar 5, 2014
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  7. Nielk

    Nielk

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    Good luck @Firestormm with the diabetes check.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    and lay off the Mars bars! :D
     
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  9. Firestormm

    Firestormm Guest

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    Sugar was high, so my pee has gone off with my bloods to the laboratory. If there is a diabetes - if - then it might account for me peeing all the time and the incontinence at night: which is what took me to the doctor in the first place on this occasion. You know how I (or maybe you don't) crave sugar after having one of my 'funny turns' at night - well I don't think for a minute it has anything to do with any possible diabetes - but the doctor said a funny thing. Just a throw away comment that struck home: it was that it could be because of the exertions I was making in my sleep-state. Seems obvious I suppose - but I hadn't actually connected this desire for a 'quick hit' of energy with physical and mental exertion before. All good stuff :)
     
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  10. peggy-sue

    peggy-sue

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    I am gobsmacked. Your gp took your ME into consideration? Suggested the troubles might be related to ME stuff?
    wow.
    If I wasn't already sitting down, I'd have to.:p
     
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  11. Firestormm

    Firestormm Guest

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    @Nielk Here I am sat with my Mum and we just watched this video which was rather good and comes from Diabetes UK. Not that we think I have diabetes of course - cross that bridge when the results come back.



    My question - should you chose to accept :) - is this: If the glucose can get into our muscles that could it be what is causing me to experience the pain/aches etc.? I am thinking it might be.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I could only watch a small bit of the video before my brain started wandering. It seemed very elementary stuff.

    Near the beginning the narrator says that we NEED glucose in our muscles. It's used to make energy. If she said anything about glucose in muscles being problematic, perhaps someone else can point me to it.

    IMO, glucose in muscles is very unlikely to be a cause of our problems! What may be at least part of the cause of muscle problems is the lactic acid/lactate that accumulates to excess in ME. Another part of the cause may be mitochondrial malfunction due to autoimmunity, which in turn may be a cause of the lactate build-up. These things are discussed in other threads including PR articles.
     
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  13. Nielk

    Nielk

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    Thank you, @Firestormm for that video. It gives a very clear outline of what happens to the body with diabetes 1 and 2. I agree though with @MeSci that it does not produce the pain in the muscles that we experience with ME. It does produce fatigue though which is common in many diseases.

    I hope you get a clear picture soon as to what is going on with you. I know the waiting is hard.
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think that glucose will only cause fatigue if there isn't enough insulin, or not enough response to insulin, which means that it can't be used to produce energy. So it will be passed out in urine, or worse - damage blood vessels.

    Here's some relevant info:

    http://www.diabetes.co.uk/tiredness-and-diabetes.html

    More technical stuff about the damage high blood sugar can cause:

    http://clinical.diabetesjournals.org/content/21/4/186.full

    That's why I keep going on about the carbs and sugars!
     
  15. Firestormm

    Firestormm Guest

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    Yes. In the elementary video ;) it is this lack of insulin (and in Diabetes 2 an additional restriction is imposed from excess fat), that prevent the glucose from reaching muscle cells. She describes the insulin as being the 'key' for the 'locks' that enable the glucose to flow. So, if glucose is denied or is restricted in it's delivery to the muscles - it seems reasonable that symptoms might be more that 'fatigue' which is I understand a general symptom conducive to a lack of glucose overall. I wondered what the specific muscle symptoms might be: fatigue - possibly - but also aches, pains, weakness etc. seem to me also a possibility. In relation to ME I do think lactic acid is a strong candidate as well. But, speaking personally, and if diabetes is diagnosed I will have that, ME and Apnea. All of which can produce similar symptoms in many respects. It is I suspect only the treatments - and resultant alleviation - that will determine which of the three has the greatest role to play in my current situation. It will be an interesting - if somewhat unfortunate - experiment.
     
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I just lay on my exercise mat to rest. The amount of time it takes to get through a few exercises is still annoying. I strained my back and need to do exercises for it. I am not able to do as many as my chiropractor recommended.

    I really like my pulse oxometer. Some days I am able to do more exercises before needing to stop than others. By using it, I am able to rest only as much as I need to.
     
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