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Dr Lapp's Stepwise Approach

Discussion in 'Lifestyle Management' started by Googsta, Apr 7, 2012.

  1. Googsta

    Googsta Doing Well

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    I just watched this online last night & was wondering if anyone here had tried it.?

    He stated a study was done where they had ME/CFS patients walk on a treadmill for 3 minutes then rest for 3.
    In all 10 repetitions of this.
    He said no-one had PEM or crashed.

    He also suggested wearing a pedometer & doing between 1000 - 5000 steps per day, no more/no less.

    Sorry, I don't have the link but it was called the Stepwise Approach, May 2010.
  2. SickOfSickness

    SickOfSickness Senior Member

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  3. Googsta

    Googsta Doing Well

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    I doubt I can either SOS :(

    Dr Lapp reckons we can, according to this. The term 'couch potato' was used several times.

    I am doing well to manage a shower (with a seat) every 4 days & I am fortunate to have a Carer too.

    It would have been helpful to know what level these patients were at ;].
  4. ukxmrv

    ukxmrv Senior Member

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    That's so funny. One of the things I noticed straight after i came down with ME (acute viral onset) was that when I tried even to walk on a treadmill I would fall off. My balance was so shot that it wasn't possible to do. Tried very slow pace etc. When I walk on the pavement I use a walking stick often as I am all over the place.

    I can't even have a proper bath or brush my hair or get out of bed a lot of the time. His patients must have been very mobile to do this. It's the usual story of wondering what they have had to give up to do the exercise (i.e. does someone cook and clean for them) and why they didn't have PEM after the extertion of going to see a doctor that most patients I know experience.
    taniaaust1 and Ocean like this.
  5. Gavman

    Gavman Senior Member

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    Sounds ridiculous. Lets reduce a complex medical problem into one easy solution.
    beaker and Sallysblooms like this.
  6. Googsta

    Googsta Doing Well

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    I totally agree. I have someone to do most things for me & I still struggle. Maybe it would be feasable if we could concentrate on this activity alone & were not at a chronic level, say 0-3 (Phoenix scale).

    I have tracked down the study http://ptjournal.apta.org/content/79/8/749.long. I'm having trouble with comprehension today so any help would be appreciated ;)

    Only 10 patients participated. One quite after the 5th session due to dyspnea & calf pain. I find it interesting that 3 elected to sit between the treadmill, that indicates to me their health was more advanced than most of us.
    I just can't beat this fog right now. I am dissapointed in Dr Lapp & the 'couch potato' :(.
  7. Valentijn

    Valentijn Activity Level: 3

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    I think you're right, and the failure to account for PEM or trade-off in this study is no different than the CBT studies with the same problem. If there aren't objective measurements, then the whole thing is pretty pointless.
    taniaaust1 likes this.
  8. Ember

    Ember Senior Member

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    Perhaps Dr. Lapp finds comfort in simplicity. He says that he looks for four cardinal symptoms in his patients: pain, cognitive dysfunction, fatigue/PEM, and sleep disorder. He remembers them as the pain, the brain, the energy drain, and oh, I wish I could sleep again. Apparently, up to 80% of his patients have primary sleep disorders.

    I was troubled last October by Dr. Lapp's reaction to the ME-ICC as a diagnostic tool (http://www.research1st.com/2011/10/13/iacfsme-summary/):
    Sadly, ME is a complex disease, and (so far) the ICC doesn't rhyme.
    beaker and Valentijn like this.
  9. Googsta

    Googsta Doing Well

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    Thanks for providing that quote Ember, quite dissapointing.

    Correction to my initial post: the rest period was 5 minutes, not 3.

    ".....patients with CFS tend to limit their physical activity in order to minimize symptoms."
    I beleive this is inaccurate. In many cases, patients limit activity mental AND physical to recharge their battery so they can take care of themselves (meals, washing etc).

    "The Activity Restriction Index was used to determine the subjects' current ability to engage in 7 activities (exercise and sports; housework and family responsibilities; shopping; work, career, or school; social activities; outdoor work; and favorite recreational activities) on a 7-point scale (0, indicating not applicable or do not normally engage in this activity, to 6, indicating severely limited).
    The mean score for the Activity Restriction Index obtained immediately prior to exercise was 4.13 (SD=0.75). A score of 1 would indicate no limitation, whereas a score of 6 would indicate severe limitation in performing a variety of activities."


    "The Karnofsky Rating Scale was used to evaluate the subjects' degree of disability. The scale ranges from 0 to 100, with 0 representing death and 100 representing normal with no complaints or evidence of disease.
    ............The concordance on the Karnofsky Rating Scale scores was high (r =.69, P <.05). The mean score for the Karnofsky Rating Scale administered 1 month prior to the exercise session was 63.75 (SD=11.88). A score near 60 indicates that most of our subjects were able to care for most needs, but required occasional assistance."

    "These results suggest that some patients with CFS may be able to perform low levels of activity intermittently throughout the day to achieve health benefits without worsening their symptoms. "

    This study has been grossly misapplied & mis-quoted IMO. Very dissapointing Dr Lapp :(
  10. taniaaust1

    taniaaust1 Senior Member

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    I guess the ones going into his clinic are much better then the bedbound ones or extreme housebound ones. I know when I was very sick, there is no way I could of done that without severe consequences (I mean having to stay in bed for a very long time severe).

    The very severe group dont tend to end up in studies
  11. taniaaust1

    taniaaust1 Senior Member

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    I fell off of the treadmill when doing the exercise stress test at the heart clinic. I have like a brain body disconnect and was slow to respond when it start so ended up falling and almost injured myself even thou I knew it was about to start.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think I could have done this in the early years of my ME/CFS. In fact, I was wondering if I could do it now. When I was walking for exercise (gee, has it been 2 years or 3 since I did that), I found that if I walked slowly and stopped to sit down and rest, I could walk farther.

    I was even thinking about trying it just walking outside. I proceeded to figure out how long it would take. 3 minutes walking + 3 minutes resting = 6 minutes. 6 minutes X 10 reps = (oh s#!t) an hour. Forget it. Then I saw that it is really 3 minutes walking + 5 minutes resting, so that is an hour and 20 minutes.

    I am wondering now if my even wondering if I could do that much walking is a sign of cognitive dysfunction or just denial.

    That is quite a large range.
  13. pine108kell

    pine108kell Senior Member

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    I can certainly appreciate the frustration expressed here, esp if one can hardly get out of bed. The one thing Dr. Lapp tries to emphasize is that doing activities in small chunks with repeated rests works better than larger chunks with larger rests. He has a very conservative approach and does tend to focus on simple management styles and conventional symptom medication over experimental treatments and theories. This can also be frustrating depending on where you are with this disease.

    On the surface he seems to take a simple approach, but when talking with Dr. Lapp you will realize that he does not simplify the devastation of this disease of patient's individual symptoms. I think it depends where you are in your illness and what your needs are whether Dr. Lapp can be helpful or not.
    amyinasheville likes this.
  14. maryb

    maryb iherb code TAK122

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    I haven't read all the thread so apologies if it isn't relevant.
    Isn't doing things in bite size chunks what we all do? Which makes Dr Lapp management style right, I couldn't manage my life any other way.
    Prepare some veg, sit down for 20min, have a shower, sit down for 30mins- then attempt dressing(on a very good day). Put some laundry, in let dog out, sit down for 30/40mins. This is how I spend my day (on a good day) doing little bits of jobs that add up to probably 30mins for a well person.
    Of course with this illness some days you can't do anything, other days a little more, its not a progressive form of activity aimed at getting you better/fit, its more about reading your body on each day,working within its limitations, its important for muscle tone to move about as much as you can, whenever you are able,however little that is.
  15. pine108kell

    pine108kell Senior Member

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    Yes, I basically agree this is the way many of us not bedridden already try to function anyway. I don't think the idea is so novel. I think maybe his time periods of activity/rest (3-5 min) are shorter than it takes to do some actual tasks or find stopping point.

    I get the impression that Lapp thinks we need to rest a lot and stay "within the envelope" but maybe we overestimate how long the activity and rest periods should be. Not sure I agree or that it is practical. For whatever reason, this is still a mainstay of his management plan, and I admit a little frustrating. It is not the only thing, as he does address personalized issues.
  16. lnester7

    lnester7 Seven

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    My observations:

    If I keep HR under 115 is ok to keep going, if HR goes over 115 I need to slow down or stop activity. No Matter how low I keep My HR, I can only stand (relatively still like cooking) for no more than 10min (I have POTs). I do better if I do smaller task division, Instead of 30min activity then rest 45min, is better I do 5min on 2 Off and so On, when task is over I can go to the next if I do it this way, and I experience less PEM and symptoms. If I go to recline position in resting period w legs Up, I recover faster. In case I cannot recline, raise knees higher than hips.

    Activities Raising arms high BAD for me: like brushing or styling hair, reach something in cabinets.... This has gotten better since I try to do weights 3 pounders while laying down 5min on 5min off (3 sets) every other day. AND yes after it I have terrible PEM and just rest until the head buzz stops but overall I get better w time.

    If I feel the head buzz or burning (my PEM) then I stop activity and go horizontal until is gone, sometimes this means 2min sometimes 3h. I listen to my body and it has given me a lot payoff. I am most days at 7 or 8 (I am on imunovir + equillibrant).

    7
  17. August59

    August59 Daughters High School Graduation

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    They get a wide range of patients at that clinic and they will recommend the Stepwise approach if they think you are capable. When I saw Dr. Lapp, he told me to not pay any attention to that because until they knew more about what was going on he wanted me to continue resting when I felt the need and to not push myself. After all my test and seeing Dr. Black as well, I was quided in a little different direction. I don't know if it was because I have never had a problem with my blood pressre being to low or going to low when standing up. I believe during my third appointment we decided to use the envelope approach and see what i was capable of within my daily responsibilities because I was still working at the time and had 2 teenage kids.
  18. Googsta

    Googsta Doing Well

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    There was no mention of patients who were 'capable' in this conference, his statement was clear - everyone with ME/CFS can exercise.

    Perhaps they have changed their practices since but it was still misleading & misapplication of the study he quoted, which is quite concerning.
  19. TSI

    TSI

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    I didn't watch the video but I'm a patient of Dr.Lapp. I use the heart rate monitor and found it to very helpful. I've been sick for a long time and have been nearly full time bed bound for several years. He asked me to start moving about, even if it was to sit in a chair by my bed in intervals. Slowly building endurance to sit by my bed was a depressing thought, but thought worth a try. It's a slow process but now I can move around the house some days without going over my target heart rate. Not all days, so the HR monitor comes in very handy and seems to be a fairly accurate way of seeing how hard my body is working. It amazes me that some days I can barely get out of bed without the HR going too high, but sometimes can walk around and it stays in the 90 range. It seemed very silly to me as well to get out of bed and do such minimum activity, especially when I also felt so bad, but lying around was deconditioning me even more. Even a very healthy person would have problems after years in bed. The illness was certainly the main factor, but near constant bed rest has its own complications. At least in my circumstance it's helped to add some activity, no matter how small. I cant do anything like a treadmill though. .....maybe one day ;)
  20. SOC

    SOC Moderator and Senior Member

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    I think there's a lack of clarity about what is "exercise". For those of us who are still trying to achieve basic daily necessities like cooking, cleaning, or showering, "exercise" must surely be tiny increases in daily living activities without exceeding our AT. Sit-ups, leg lifts, and the like seem ridiculous when we lack the ability to take care of ourselves. It's an issue of priorities.

    That said, if one is bedbound and/or a long way from self-care, then perhaps some very simple conventional exercise might help to build enough stamina to eventually enable some self-care.

    Earlyish in my illness, after I first saw Drs Lapp/Black, I tried to stay active while staying below my AT. To be fair, that was a great deal less than I was doing before. Still, I stayed near my AT the whole time trying to do as much as I could. I had a slow decline doing that. Only by staying well below my AT most of the time, with short periods near my AT did I stop the decline. My response to treatments improved, with more rest, too.

    I think we could all use some clarity from our doctors about exercise. There is so much variation in what we are capable of, there must be a difference in what is appropriate exercise for us.

    ETA: Just so it's clear, I found Drs Lapp and Black to be very kind, sympathetic, and very compassionate. It was never my sense that they did not fully understand the seriousness of our illness.

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