The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

New Exercise Study Brings Both Illumination and Questions

Discussion in 'Phoenix Rising Articles' started by Simon, Aug 20, 2014.

  1. Graham

    Graham Senior Moment

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    Hi MeSci! Thanks. I was, confusingly, using the term "long and short fibre" rather than "long and fast twitch". But as that was based on a TV programme from years ago, I claim senility and brain fog in my defence.

    That is exactly what I suspected was happening: that over time my muscles have been changing in response to anaerobic demands. An increase in the fast-twitch proportion is the sort of change that you see in athletes who have been training extensively for sprint events rather than marathons. Presumably this helps them to recover more quickly from anaerobic exercise as well. Not that I am exactly at sprint level: a gentle amble is pretty much the same thing to me. I'm wondering whether some people with ME who are fortunate enough so as to be able to exercise a little (by that I mean go for ambles!) can, over a protracted period, reduce the payback duration after physical demands. This of course is nothing like the sort of exercise that GET proposes. I'm talking very much of the sort of "envelope nudging" involved in pacing, listening carefully to our body's responses.
     
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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    How about this then? Title "Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome."
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I haven't been able to get through all the messages yet, but I wonder to what extent low blood volume could account for at least some of the issues around exercise intolerance and/or PEM. This page gives some info about relationships between blood volume and heart rate, among other things.
     
  4. SOC

    SOC Senior Member

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    I believe that this is exactly the type of exercise suggested by Dr Sol (the exercise physiologist at INIM) and the Workwell people. They start active exercise (as opposed to activities of daily living) with short (30 sec to 5 mins depending on CPET results) of exercise that uses the low-level anaerobic (high energy phosphate) metabolism -- the metabolism used in the very beginning of activity before aerobic metabolism takes over, not the high-level anaerobic metabolism (anaerobic glycolysis) which produces lactic acid and kicks in when the aerobic metabolism can't keep up.

    As I understand it, this kind of exercise develops more fast-twitch muscle, which gives us more capability (more energy produced by high energy phosphate metabolism) before we reach our AT. This allows us to function somewhat better even if our aerobic metabolism is broken and/or our AT cannot be changed.

    I imagine your "ambling", Graham, does the same thing in addition to helping improve some OI conditions. I think the exercise protocols used by Sol, Stevens, et al, which often advise supine exercise with light (2-5 lb) weights is thought to produce faster fast-twitch muscle development without causing OI problems upright exercise might generate; however, "ambling" may be the next step for those who can manage longer upright activity. :)
     
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  5. Graham

    Graham Senior Moment

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    Thanks, MeSci and SOC. My understanding of muscle behaviour is increasing by leaps and bounds (or, more realistically, in twitches and hops). I was thinking that we would be developing more fast-twitch muscle (type 2), but MeSci's reference suggests the opposite. I need to do some more thinking, but nevertheless am sure that SOC's reference to Dr Sol's ideas has something behind it. It would be interesting to compare the balance between the two muscle fibres in the legs of people new to the illness and those who have had it for many years.

    I found this link helpful (but irritatingly slow) to sort out the essential differences between type 1, slow twitch, high mitochondrial muscle, and type 2.

    www.khanacademy.org/test-prep/NCLEX-RN/rn-muscular-system/rn-the-muscular-system/v/type-1-and-2-muscle-fibers
     
  6. SOC

    SOC Senior Member

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    Low blood volume is known to be a factor in exercise intolerance. Many of us who have treated low blood volume have experienced much less exercise intolerance. For me, it has done nothing for the PEM, but just losing the exercise intolerance has helped a lot.
     
  7. Sushi

    Sushi Moderation Resource Albuquerque

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    I can report my experiences but can't guess at the causes! I have been able to gradually reintroduce exercise--first light anaerobic exercise (pilates at a low level, lying down using weight machines), then over a few years building up the level of pilates to the point now that I can "keep up with" a class of normals.

    I have also been able to extend my strolls and even introduce slow bike rides of up to half an hour (only in cool weather) but, I don't know if I have been "nudging the envelope" or simply that my ME symptoms are getting better with treatment and that this is allowing me to exercise without payback.

    Sushi
     
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  8. jimells

    jimells Senior Member

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    Quiet desperation and poverty.

    I fought for disability benefits for years. The year and a half before some lawyer calling himself an "Administrative Judge" waved his Magic Legal Administrative Wand and granted me benefits, my only income was food stamps. I would have done anything to prove impairment, even at the risk of further physical damage.

    How long can a person without money keep their house?
    How long can a severely ill person live on the street?

    The choices forced on poor and sick people, by a society built on cruelty and coercion, are not appetizing.
     
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  9. jimells

    jimells Senior Member

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    Even after 10 years of illness, I'm still shocked at how little progress has been made in 20 years.
     
  10. Stretched

    Stretched Senior Member

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    I really feel for you and admire that you're on a forum, posting trying to find a solution... .

    As Alex posted 'first, find a way to survive... .' I would offer - and not fall victim to desperation even if survival means a cup and a corner. Indeed, life is not fair but in a bigger scheme it can be viewed as a game where one
    is only able to play the cards dealt.

    Have you tried to get help Pro Bono legal assistance? Sources might include multiple letters to the legal aid society
    nearby, certainly in Boston; and at the law schools around the northeast, some of the best with diverse, world wide student bodies? Also, there used to be several forums where the legal eagles hung out to discuss their cases and opine on questions.

    Maybe you could snag an advocate from one of these sources, even a third year student who feels
    compelled to try his/her hand. It has happened in numerous cases over the years. Include the law school deans.

    In any event, don't throw in the towel. Fortunately, the internet is a gateway to the world. There's always a way to survive even if it's a inverted compromise and meager means.
     
  11. Graham

    Graham Senior Moment

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    So true, Jimells. Any time I even begin to feel a bit sorry for myself, I realise how lucky I am in comparison with so many.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It's great that you have improved, but I am sceptical about whether any kind of pushing can bring about improvement. I think it's more likely that other interventions are improving physical function, enabling you/one to do more.

    I achieved fat loss, muscle gain and improved coordination without any deliberate increase in activity, but through diet and supplements. Once the body is functioning better, it tells you that you can do more. With me I could feel the feedback of my muscles working better.

    Improvement isn't consistent, and there are better periods and worse periods. Impossible to tell what is going on without tests.
     
  13. Stretched

    Stretched Senior Member

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    As I write this I’m in a ‘crashed’ state - PEM, due to reading and paperwork this past weekend.
    No prior defined exercise other than walking around the house.

    I wonder how the researchers interpolate this and similar phenomena into their testing? I would
    indubitably be in worse shape if I attempted their testing regimen. (I know from doing so in past years
    that my highs on up days became lower as well as my lows on low days. They never seemed to return
    to pre-push levels on each crash - instead my baseline rose, e.g. to 7+ on a scale of 1, best, 10 -worst! I now try ever so much harder not to push too hard on good days (not always successful)!)

    As with other PWCs this demise can come on from simply having a friend drop by and engaging in conversation. It comes on as well pursuant to anxiety, e.g. a neighbor's dog barking too long, or thinking
    too hard (on a problem's resolution, etc.).
     
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  14. Stretched

    Stretched Senior Member

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    Thanks @voner for the reference which I followed and read the abstract. Since I am not a pub med author I
    could not gain access to the complete article. However, I got the point and was surprised by the Androgen
    correlation, which I guess explains the females' side.

    While there perusing I did come across another article in pub med where the full text was offered. While it's 5 years old it does offer credence to the role of HPA activation in PWC's.

    Moderate exercise increases expression for sensory, adrenergic, and immune genes in chronic fatigue syndrome patients but not in normal subjects.
    Light AR1, White AT, Hughen RW, Light KC.
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I am so sorry to hear of your terrible experience, and hope that your health improves.

    I have been seriously ill a couple of times from over-exertion, but the exertion had been continued/repeated over a period of time, with no rest in-between. It took a year or so to get back to my previous level of 'ME health'.

    We seem to have variable ability to recover from exertion. I've been ill for 19 years but am not significantly worse than I was near the start, despite being 19 years older. I do realise that I probably made things worse at the very start by trying to get fit (e.g. cycling) but since it set in properly I don't feel worse overall. I have had changes in the pattern of symptoms.

    So I think I would be safe doing the 2-day CPET, but acknowledge that it could be very dangerous for some, and it must always be completely voluntary.
     
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    This figure from the study makes it very clear indeed:

    [​IMG]
     
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  17. Graham

    Graham Senior Moment

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    It is pretty likely that either there are distinctly different illnesses under our label of ME, or that, like strokes, the underlying cause is the same but the effects depend on severity and locality. My hesitation in mentioning my response to exercise is exactly due to that. The last thing I want to suggest is that everyone can improve like that: I know only too well that that is not true. But it does seem to be true for some of us, and MeSci's posting seems to support that. Personally I rate myself at about 20% of my normally functioning level (that's a mathematical assessment of ability to carry out mental and physical tasks, rather than the artificial percentages generated by some of the grading questionnaires), but I would prefer to be 20% of me at my most fit. That matches my limits: I can work at an A-level maths paper, producing solutions for about 45 minutes before needing a break, and can amble for a little under an hour. But that doesn't mean I don't hit unexplained bad patches where my performance drops dramatically. And, believe me, I do appreciate how many of you would love to be able to reach my levels of activity, and how many of you are hit hard by post-exertional malaise.

    Oh for Aladdin's magic lamp.
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm not sure what you mean by me 'improving'. I have never improved as a result of exercise - quite the reverse. Was my own message confusing?

    I have improved from my worst as a result of dietary changes plus supplements, and probably better pacing.

    I would suffer short-term exacerbation from an exercise test, but I don't think I would suffer prolonged damage, based on my past experience. Others probably would.
     
  19. Graham

    Graham Senior Moment

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    Sorry MeSci: I need to be clearer. I was referring to the graphs showing two distinct subsets, which seems to suggest that there are at least two types of people with ME, one of which may be able to tolerate and recover from "exercise".

    By "improving" I'm not suggesting that my ME is actually being addressed, just that I was in a pretty bad way after struggling on at work for 18 months prior to diagnosis, and I have, very slowly, managed to improve from that low.

    I must admit that I find the written word quite tricky at times. This illness has a minefield of terms which can so easily be misunderstood. "Exercise", "improvement", "payback": these have very different meanings to us with ME than to those who are healthy, and I am very much using them from an ME perspective.
     
    Last edited: Aug 27, 2014
  20. taniaaust1

    taniaaust1 Senior Member

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    Valentjin..

    Thanks for that comment. I just copied it as it was interesting. I wouldnt have got my head around what it could mean if it wasnt for your comment.
     
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