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To exercise or not to exercise in chronic fatigue syndrome?

Discussion in 'Lifestyle Management' started by Min, Aug 21, 2009.

  1. Robin

    Robin Guest

    Pacing vs. cardio workout - rethinking exercise

    I recently read this article in Time magazine about weight loss, which argued that exercise isn't as nearly as important as diet. (I linked to the "print this article page" because there's less ads and it's on 1 page instead of 4.) If you've ever struggled with weight issues it's very interesting.

    Later in the article, the writer discusses the definition of exercise which struck me as really pertinent to CFS.

    and later...

    So, I got to thinking about CFS of course. If I walk for ten minutes on a treadmill, I'll be in bed for most of the day and probably not be very functional the next day. BUT, if I pace myself I can do a lot of little things -- empty the dishwasher, take the dog out and throw his ball (bending and walking), run a load of laundry, change the sheets on my bed. I need to lie down in between tasks of course, but I can exert much more energy throughout the day with pacing vs. only a few minutes on a treadmill. And, I will be able to function the next day!

    There's such an inclination in the medical community to get us on treadmills and get our heart rates up, but, it looks like this type of thinking may not even be that important for healthy people, much less people with CFS.

    We're always learning new things in medical research. This is just one little article and I'm sure there's a lot of criticism out there about it.

    But, I've been lamenting for years the fact that I can't do cardio exercise and the implications of that for my overall health. But, maybe in my own way, I'm finding ways to be active within my limitations.
  2. shrewsbury

    shrewsbury member

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    The Exercise Guidance Note - Australia

    This was posted by Sussana Agardy on co-cure on Dec 1 09

    I liked this article overall. Fairly good summary, although I think that the warning that many people are unable to increase their energy envelop at all could have come earlier, as could have the idea that relapse often happens for unknown causes, independent of energy pacing. I always like it when someone else has collated the references for me. Could perhaps be more succinct for easy use by medical professionals.

    And I like the term payback she uses interchangeably for post-exertional malaise/fatigue. That's definitely what it feels like to me sometimes, FATE saying "hah - you thought you could slip in a bit more movement and/or thought!? - take that - 'thwack'" And down I go.


    -
  3. Kati

    Kati Patient in training

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    Thank you IslandFinn, very useful for my file against disability company, I also appreciate the list of references.
  4. gracenote

    gracenote All shall be well . . .

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    great post

    This is great. Thanks islandfinn. I couldn't get the link to open, though.
  5. flybro

    flybro Senior Member

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    pluto
    Great post

    Thanks islandfinn

    this is the best and I'm going to blog it and roll it out starting in the new year.

    FanQ
  6. Andrew

    Andrew Senior Member

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    I like the article and I agree with your comments on how it could be better.
  7. Terri

    Terri Guest

    Great post

    This is a very good article. I am going to take it to my doctor and also use it on my blog when I get it up and running.

    Thanks Islandfinn!

    Terri
  8. shrewsbury

    shrewsbury member

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    hi all,

    Glad you liked it too (+can see how it could be improved a titch - let me know if you think of other ways Andrew)

    gracenote - I hope I've fixed the link to co-cure - those danged typos never stop

    Kati and Terri - I agree that it could be helpful with insurance companies and doctors. If it does prove to be of help, could you let the rest of us know?

    flybro - I didn't know you have a blog - checking it out will be one of my new year's gifts. Like the idea of this info getting out there. Feel we all to often are individually reinventing the wheel - that's my excuse for wanting to database all ME/CFS research and have nice lists like this ready on a resource page on the forum!

    I'm wondering about doing a north american version of this, making it a bit more succinct, and adding some quotes from Staci Stevens at Pacific Fatigue Lab and reference to her podcast from the Calgary 09 conference - it's THE best I've ever heard on "exercise". I still haven't found any transcripts of it. Finding them or doing them myself is on the top of my list of 'things to do beyond life maintenance stuff' (which obviously includes this forum now)
  9. Andrew

    Andrew Senior Member

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    I'm getting sicker right now and I can't spend much time. But I think this could turn into an excellent document. Concepts I would like to see are:

    From Bruce Campbell
    1. Energy Budget. The idea with this is that you have so many energy units per day. You use some for self-care, others for doctor appts. and others for exercise, etc. The idea is that one needs to exercise within this context. Which means if you use up a lot of energy units on other things, you have to exercise less that day.

    2. Schedule daily rests. Resting consists of lying down with eyes closed.

    From Nancy Klimas.

    Every period of exercise must be followed with an equal period of rest.


    BTW, I described some exercises somewhere here that can be done lying down. But I don't remember where. Maybe I can find them later.
  10. shrewsbury

    shrewsbury member

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    Hi Andrew. Sorry to hear that it's a getting sicker time. Thanks for spending some of that precious energy on adding your good ideas.

    I'm slowing down these days, but have a sticky note by the computer to remind me that I want to work on this when there's a bit more energy.

    Oh our brains!

    Hope you feel better soon. More importantly, hope you manage to hang onto feeling good, no matter how sick you are.
  11. Andrew

    Andrew Senior Member

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    Doing a little better.

    Anyway, the more I read the thing you posted the more I like it. I'd feel okay giving this to a doctor. What it is missing would be too much to cover in the summary format it presents.

    BTW, here an energy management article that seems good. Let me know what you think.

    Also, here are the exercises I was taught.

    And btw, I realize that some people who don't "exercise" are actually doing much more than I am by simply going to work, shopping, etc. And they can't add anything. That's why I like the concept of total activity, which should also include mental activity, stress, etc.
  12. Andrew

    Andrew Senior Member

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    A couple more thoughts.

    1. In another post someone questioned the term "post exertion malaise." I just remembered this and looked up "malaise" in an online medical dictionary. It says "A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."

    I can't comment for others, but this is how I feel at my best. It is how I feel when I've been resting a lot and everything is going as well as possible. It is at the opposite pole of how I feel with a post-exertion symptom flare.

    I have a feeling this term is for healthy people who have mild flu symptoms after exertion. It is the wrong term for CFS.

    So what are some better terms?

    Hmmm. I wonder if there is a medical term for worsening of symptoms. Does anyone here know what that would be?

    2. I don't know if you have been seeing the recent studies from Holland regarding graded exercise. They actually tried instituting the UK GET methods, and found that they just don't work.

    We sometimes read that most studies found that GET works. But I wonder if that is really true. Maybe the true statement would be "Most UK studies find it works, and UK studies use the Oxford criteria which does not actually describe CFS or ME."

    3. How about a true or false quiz. Here's the question. "A good exercise program for CFS consists of a nonaerobic plan that starts with very light exercise that increases gradually over time."

    The correct answer is "false." A plan like this doesn't consider what other physical and mental stresses the person is experiencing. If a person is struggling to work part time, adding gradually increasing exercise could push him/her over the edge. If a person can barely get out of bed, one cannot assume that even a mild movement plan can be increased. A plan must always be considered in the context of other physical and mental stressors. And there will be times when exercise needs to be decreased or leveled off.

    There is another thing wrong with this plan. It doesn't explain how to accomplish crash avoidance. This is like teaching someone to drive, without explaining when, where, and how to put on the brakes. Any compassionate guideline should explain this, not simply leave it to the patient to fumble around, experiencing crash after crash.

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