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Graded Peanut Therapy

Discussion in 'Other Health News and Research' started by charityfundraiser, Mar 3, 2012.

  1. charityfundraiser

    charityfundraiser Senior Member

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  2. Astrocyte

    Astrocyte

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    Interesting thought, charityfundraiser. So if our activity is causing immune system abnormalities, we might be able to start from scratch and increase our activity in such minute doses as to avoid PEM and actually physiologically adapt to activity albeit in minute amounts. Hmmm. Difficult to judge 'minute' though as every movement (or tiny piece of peanut, in your analogy ) would need to be taken into account.
     
  3. DaiWelsh

    DaiWelsh

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    I am no expert, but putting aside your well made point about judging incremental exercise in the life of an average person, assuming we suffer PEM as some sort of immune system response, it would presumably not be to the act of exercise but to some by-product thereof? Again, I am no expert but it is quite possible 2 minutes and 3 minutes of exercise will produce the same chemical/hormone/whatever response as each other, just one would last a little longer? In other words it would in practicality be impossible to increase the dose of whatever is causing the immune response in any reliable way, let alone in minute and precise increments?

    I guess what I am saying is I don't really see a parallel (and I am not sure the OP was suggesting one?), but again I am not an expert so could be quite wrong :confused:
     
  4. charityfundraiser

    charityfundraiser Senior Member

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    Yes, that is what I was thinking and you articulated it a bit better. I was thinking the PEM or crash is analogous to the severe peanut allergic response. Here they are trying to increase peanut micro-doses gradually in such a way as to avoid an allergic reaction but increase tolerance up to 20 times for peanuts. Increment too large or fast and hit the negative reaction, then progress will be stalled.

    I think the idea is to pick an activity (walking, stretching, yoga, tai chi, whatever) outside of your baseline activities and increase that.
     
  5. Esther12

    Esther12 Senior Member

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    That's a coincidence - I'd just mentioned this paper in a thread on diet last week. I'm not sure how helpful this study is likely to be outside of understanding allergies though.

    Anyway, to follow this routine for CFS and activity I think that we'd first have to work to reduce our activity levels to zero... which is impossible. The tollerance that built up was also rather limited, and we don't know what the upper limits for this approach would be, or if it would become counter-productive above a certain dose. That peanut allergies might be helped in this way is no particular reason to think that CFS would be. Lots of different conditions can be treated in lots of different ways.
     
  6. charityfundraiser

    charityfundraiser Senior Member

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    The analogy is of course general, not specifics. The main reason I posted it was that I think this is a better way to think about GET than to get all bogged down in getting annoyed at Wessely and co's ideas about it.

    I only post this after it's worked to some degree for me already over the last 6 months. Some parameter choices did not work and I didn't progress. I just kept tweaking them until I found a set that produced progress, however little. The only thing that mattered for me was testing and testing parameters until finding a positive trend however small. Over time, that accumulates like compounding interest. Yes, there may be an upper limit at some point. I'd love to find out what that is. It won't work for everyone. No treatment for any disease does. Other things may work better for some people.
     
  7. Valentijn

    Valentijn Activity Level: 3

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    Can anyone explain to me the fixation on suggesting we spend more time walking around in circles when we can't even brush our teeth twice per day?

    Why waste energy increasing an "extra" activity when we can't even accomplish essential activities? I don't want to be able to spend an extra 5 minutes per day doing Yoga ... I'd rather spend that energy doing household chores, gardening, etc. Maybe even going to the grocery store again some day.

    Oh, and minutely increasing my activity just causes me a slow-motion crash. Feeling slightly crappier day by day until I stop doing everything for a few days, or until I crash.

    GET doesn't work because we have a disease that is perpetuated by something other than inactivity and illness beliefs. It might encourage some people to get closer to their upper limits, but if something extra comes up in life (as it always does), they won't have the energy reserves to handle it.
     
  8. charityfundraiser

    charityfundraiser Senior Member

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    Those were just examples and the rest was covered by "whatever". You choose the activity so yes, it could be gardening, chores, or brushing your teeth. Some people enjoy walking just like you enjoy gardening. And yes, it depends on the severity of your CFS. If one is not even able to do baseline activities, then they work on that first.

    GET works for some people and not for others. GET itself has nothing to do with inactivity or illness beliefs. That is something that was projected onto an extremely common motif of incrementally increasing or decreasing something. Why I posted this peanut allergy example is that the concept of incrementally increasing something, peanuts, or whatever does not imply that what you are trying to reach such as a 20-fold increase in peanut tolerance was a result of lack of peanut-eating or fear of peanuts or abnormal beliefs about peanuts.

    I've tried many treatments that worked for some people and not for others including me. That doesn't mean I have to say that Valcyte, Lyrica, or whatever doesn't work for CFS at all. I've tried several treatments that worked for me and not for others such as coenzyme Q and manual therapies, but in those cases, people who those treatments don't work for don't argue that those treatments don't work for CFS.
     
  9. charityfundraiser

    charityfundraiser Senior Member

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    Once when I was healthy, I busted my foot and tore something. When it healed, everything looked normal but I could no longer extend and point my foot at all. I had to stretch it in extremely minute increments daily which hurt a lot and it was about a year before my foot returned to normal flexibility. If I had stretched in large increments, I would have re-torn things and created further injuries. Was my unbendable foot due to lack of activity, lack of stretching, fear of walking, or abnormal beliefs about feet? If someone came along and told me that I should do graded stretch therapy because my foot problem was due to deconditioning or abnormal beliefs, would that have made me reject stretching my foot? If I hadn't stretched my foot, it would probably still be stiff but it didn't get that way from lack of stretching.
     
    Astrocyte likes this.
  10. Astrocyte

    Astrocyte

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    That made me laugh. And you make a very pertinent point in your next post, that we are possibly rejecting something that maybe of value for some, because of its' flawed underlying theory.

    Hey DaiWelsh, Charityfundraiser had alluded to exercise/peanut analogy on another thread so just wanted to make clear that I wasn't mind-reading. And who knows what it is that is actually going on in PEM, most likely a complex interaction of many systems in such detail that we may never fully understand it. For me this thread is just conjecture (at the moment), though obviously it's worked somewhat for charityfundraiser which is good to hear.
     
  11. Astrocyte

    Astrocyte

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    I have a particular interest in exercise but find the deconditioning aspect of GET unacceptable. Obviously less activity means deconditioning but it doesn't explain why I cant recondition ie adapt to exercise in the normal way.

    I do however like to experiment with various rest/ activity levels and throw ideas around.

    Leaving the flawed underlying theory of GET aside, one of its' first premises, practically speaking, is to get back down to a level of activity (that includes all physical activity including household chores etc) where we have no flare of symptoms and then to stabilize at that level. So this is an aspect of Jasons energy envelope by another name. But even that can be difficult as Valentjin says, life intervenes. I think this stage should be maintained, if possible, for months rather than a few weeks as GET suggests. It's an essential healing phase where we need to consolidate and allow our bodies to rebuild. Esther12, I think maybe this is the zero peanut phase.

    However, its almost impossible to reduce stressors to that degree (and I use 'stressors' in the broadest sense including infection, mould, traffic fumes/noise bla bla). So that's the first problem, we cant properly get back to the zero peanut level.

    Or can we? For me intensive pacing (10 mins gentle activity and 10 mins rest) seems to have improved things a little (when I do it!) and maybe its a way of resetting the system every ten minutes. In other words returning to zero peanut level every 10 minutes.

    I agree its obviously far more complicated than that, with a myriad of variables that are likely to be cutting us down. But in chatting things through we might spy an inkling of an answer.

    I value the chance to talk about activity and exercise on a thread that avoids getting heated about GET. So thanks to charityfundraser for starting it. And just reading and writing about this peanuts analogy has inspired me to get back to that 'tough pacing'. Though now with a more developed understanding of what I'm trying to do, which hopefully will make it easier. Metaphors can be very powerful.
     
  12. leela

    leela Slow But Hopeful

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    Yes, but would someone please help me with my abnormal peanut beliefs.
     
  13. charityfundraiser

    charityfundraiser Senior Member

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    Yes, metaphors can be powerful. When I came up with my second foot injury example, I realized that the more analogous examples of graded X therapy I think of, the dumber the assumptions about abnormal illness beliefs sound. :p

    Going back to my personal chosen activity examples which included yoga and tai chi, I do think that some activities have a better chance of producing a positive cycle, essentially raising your upper limit as you do them. Yoga and tai chi have been shown to be mildly helpful for people with fibromyalgia, CFS, and other chronic illnesses. Walking for me actually did not have much of this positive cycle. I should also add self-massage to my list of activities which have a positive cycle.
     
  14. DaiWelsh

    DaiWelsh

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    Oh, good, not my reading fail then :thumbsup:
     
  15. Astrocyte

    Astrocyte

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    Leela, it depends on just how abnormal your abnormal beliefs are. Seriously weirdly abnormal (and I'm not saying they are) would suggest you need to stay well away from peanuts altogether. :angel:
     
  16. charityfundraiser

    charityfundraiser Senior Member

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    Yes, in addition to getting down to a level of activity with no extreme PEM, the premise is also to have enough of a buffer zone at that level to be able to deal with the unexpected plus attempt the increased activity. Basically, I think you're not supposed to push GET so hard that you get sicker. I did when I first became ill and got much sicker long-term, but I had just seen the words "graded exercise therapy" without knowing much about it so I was exercising way too much. At 1-minute increments, hypothetically, if you stop increasing immediately when you hit an unacceptable level of PEM and go back down to the last okay level, one shouldn't make oneself sicker. But yes, personally, I think going with slower increments and taking more time to stabilize is safer than the examples in the manual being discussed in the other thread.

    This depends on the severity of one's CFS and how much support one has for taking care of the necessities. One of the things I actually did was pretty much completely cut out my social life for a few years which when bedridden means phone and even IM/e-mail contact. I also stopped posting and even reading this forum and others for a long time. I guess it's a question of what activities one is willing and able to sacrifice.

    This reminds me of Bruce Campbell's recovery story and his discussion of the energy envelope: http://www.recoveryfromcfs.org/chapter7.htm

    There is the added concept of "expanding the envelope".

    Your 10 minute on, 10 minutes off idea reminded me of this on that page:

    "The same student also taught me that how we rest can affect the amount of energy available to us. At the beginning of the course, she was resting six hours during the day, taking two naps of three hours each. She decided to break up her day into one- and two-hour blocks, taking a 10 to 15 minute rest during each block. Using this strategy, she reduced her total rest time by an hour and a half a day after two months. Four months later she was resting three hours a day, half as much as before the course. By taking frequent short rests, she added three hours of productive time to her day, without increasing her symptoms."

    I read that a couple years ago, tried it, and it really helped.

     
  17. Astrocyte

    Astrocyte

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    Exactly what I did. I didnt get sicker in the long-term I just didn't get better and lived an endless round of crashing.
    To use a term like 'Graded Exercise Therapy' that already has strong connotations is not very sensible. And even the specialists abbreviate it to Graded Exercise. It just helps fuel resistance and anger. Plus, if you've come from a sporting background and dont have access to a CFS/ME clinic then why would you assume it was anything other than what you've always done in sport. The term Graded Activity changes the tone entirely and is probably much more appropriate.
     
  18. Astrocyte

    Astrocyte

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    I'll take a look at Bruce Campbell's link, thanks. Just to be clear i don't just stick to 10 mins on/off, that would drive me crazy. But I haven't yet settled into a comfortable rest/activity routine, partly cos I keep getting colds/relapses (then improved energy) which continuously changes all the parameters. My main problem is when the brain is capable the body isn't and I'm too able to over-ride it. Easier to get it right when my brain is duff too. Have you come across the ActiveME app? I'll post on another thread about that.

    It's good to hear that you are in control of your illness.
     

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