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GET

Posted , 7 users are following.

bob1970
bob1970

Saw this mentioned in another thread and thought it was worths its own.

I was wondering who is following a GET routine and if it has been any benefit?

Everything I've read from other sufferers and docs who have actually studied ME/CFS state its bad news. The ME Association nonsensed a Daily Mail article last week saying exercise cures CFS.

I know its one of the things the NHS recommends but from reading into it the study they did was a shambles.

I'm wondering if its things like this preventing people from improving.

1 like, 15 replies

15 Replies

  • dragontest
    dragontest bob1970

    Posted

    Hi Bob1970,

    I think any exercise if you are well enough for it and it is structured in such a way that it’s done in a gradual fashion, can be of benefit to some people with ME. We all do some form of exercise every day without really thinking about it. Going the loo - having a shower or buying food from a shop etc. just building on that routine little by little is all I have done.

    I have not been on any CBT or GET programs as I have doctors that are not interested in curing something they can’t see or don’t understand too well. But thats another thread... However, I do have personal goals that I make; 20 years ago, it was to stay awake for more than 4 hours a day and being bed bound for the remaining 20 hours.

    Nowadays I am awake like the majority of people although I have brain fog and I’m in some pain I would say 75% / 80% of the time, but only by building up to my current level and falling back again then starting over again that have I the life I live today. Not perfect, but I’m not bedbound like I was. So some Graded Exercise over a long period has been of benefit to me. I would say I’m not as well as I was before ME struck me down, (nowhere near) and by no means have I cured my body of ME, as I still have some very bad days,  but I do have some form of “normal” existence at times compared to 20 years ago, I will say it’s getting harder as I get older to recover from relapses in the condition. I guess I’m saying “everything in moderation” has works for me a bit of the time… (but that's my personal take on it. It might not be others...)

    • bob1970
      bob1970 dragontest

      Posted

      I do exercise as well, but I listen to my body and only do it when I know I've got the energy to spare. I would say it has helped me some as well.

      I was curious if GET was a goal set to someone by a Dr. This seems problematic to me as in my experience forcing myself to do any exercise whether mental or physical, when I don't feel up to it, definitely feels like the wrong thing for my body.

    • guy72767
      guy72767 bob1970

      Posted

      Hi Bob...interesting thread, well worthy of discussion...it's different for everybody but depending what stage of the illness you are at can determine the benefits or risks...i have always tried to exercise a bit, not able to now afetr a savage relapse early Dec, but i hope to adopt that startedgy when i think my body is ready rather than right now..it is a difficult situation for everybody....
  • david59662
    david59662 bob1970

    Posted

    Hey Bob, well i just started, with my GET i'm in control. I do what what i feel i can. I'm there because i want to be, i cannot see how resting all the time can fascilitate recovery. We have muscles that MUST be used. Being an athlete in a previous life i konw this more than most. The correct amount of exercise must be beneficial in CFS.
    • bob1970
      bob1970 david59662

      Posted

      Its good to hear that the individual is in control with GET.

      We have to listen to our bodies. Are we exercising and improving? Getting worse? Staying the same?

      I had a period recently over 3-4 months where I did little to no exercise. Now I seem to have improved a small amount and can now go out and walk about for 10-15mins. I feel the time doing no exercise was the right thing for me looking back now. Its so difficult to tell though as we know so little.

    • Scoobydoo65
      Scoobydoo65 bob1970

      Posted

      Hi Bob, Personally I tried GET as a result of going to a NHS CFS Clinic- and crashed big style! So, it didnt work for me. Now my new goal is to rest, rest and more rest- like you have with resting, I am hoping to see more of an improvement with that. I query some of the things that the M.E Association post, I dont always agree with them xx  
    • Scoobydoo65
      Scoobydoo65

      Posted

      ...forgot to say it has been proven that exercise is in fact detrimental to us xx
    • bob1970
      bob1970 Scoobydoo65

      Posted

      I have read that as well.

      Maybe its how we define execrcise. When I say exercise I mean walking for a short period of time without taxing myself too much. If I try to do anything that gets me to the point where I am out of breath my body rebels badly so I don't do it. It doesn't feel as though it is doing me any good.

    • Scoobydoo65
      Scoobydoo65 bob1970

      Posted

      Yes, I 100% agree-I listen to my body and when it is saying stop - I stop. The exercise I was doing was just simple things like hoovering 1 room or a short walk to the corner shop, nothing my body didnt wnat to do, but doing it continously seemed to aggrevate my body  - could it be due to build up of toxins from said exercise that maybe then we arent able to detox as well as normal folk can? Worth watching is a video talk by Mark VanNess called a realistic aproach to exercise and rehabilitation, on a certain tube xx
    • bob1970
      bob1970 Scoobydoo65

      Posted

      I'll have a look at the video.

      The periods where I have shown most progress was from resting, staying positive with things like Mindfulness, and just doing small things when I felt up to it.

       

    • Scoobydoo65
      Scoobydoo65 bob1970

      Posted

      Thats encouraging to know ; I am going to try that this year too :-) and take up meditation again xx
    • Fidd
      Fidd david59662

      Posted

      Hi David - You may have been spun by some of those who talk about 'facilitating recovery' - presumably a term used because it lets them make claims using the word 'recovery' without providing good evidence that their intervention leads to people recovering.

      "The correct amount of exercise must be beneficial in CFS."

      That would seem to be something of a truism. The incorrect amount of exercise must be harmful.

      An example of some of the problems in this area is provided in this BMJ comment: http://www.bmj.com/content/347/bmj.f5963/rr/674255

      It would be interesting to know if those making money from the provision of GET feel they have any responsiblity to pushing for the release of data that would allow patients to make better informed decisions about this intervention.

  • david59662
    david59662 bob1970

    Posted

    Anyone feel they have a weak heartbeat with CFS ? Big symptom for me. Hate it.
    • bob1970
      bob1970 david59662

      Posted

      Heart has been a biggy for me as well both weak and feeling like it is going to beat out of my chest. Also my resting heart rate has ranged from 75-100.
    • david59662
      david59662 bob1970

      Posted

      Hi bob, my heartrate hasn't changed much, it moreso the actual power of the contraction is at least 50% weaker than pre CFS levels. It's sometimes so disconcerting i cannot sleep for it, no matter how hard i try to ignore it.
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