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An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

Discussion in 'Lifestyle Management' started by lartista, May 3, 2014.

  1. lartista

    lartista Senior Member

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    https://www.facebook.com/groups/mecfssafeexercise/

    ME/CFS SAFE EXERCISE GROUP

    Do you have a ME/CFS specialist - expert?
    Are you on a viable treatment plan by a professional?
    Have you had a V02 max test done?
    Have you been do some type of appropriate exercise activity management plan?
    Have you been working out with ME/CFS with or without POTS?
    Are you an ex-athlete living in lust of one day... maybe one day I can do something?
    Do you have or use a cardio chest belt with a watch to record your heart rate?
    Do you walk but want to step it up?
    Are you at least a 6 on Dr. Martin Lerner's Energy Point Index Scale?
    Has your doctor said you can and should do some light form of exercise but do not have any idea of what to do?
    Do you want a group of positive supporters helping you avoid the pitfalls of trying this alone?

    I am a Klimas patient. I am an ex-athlete with the VO2 max test being done in 2011. I have been too stubborn to do more than walking or just trying to bust through with disappointment being the major result of over doing it. I refused to submit to such a low level of exercise, so it was all or none and NONE was more like it.

    Well I decided I had enough and started really researching what this was all about and the experts had a recommended way to exercise or call it a Activity Management Plan. I went looking for one person to be my secret partner to try to submit to Klimas' plan and ex-athletes came out of the woodwork around the world! ... They were afraid to say what was working for them.... Within three days, 200 people from around the world joined this group.

    I will not be responding here to any comments as I have my hands full over there. SO if this is YOU above answering YES to several of those questions and you want the real medical reports by the leading experts on what they are doing to help their clients have a higher quality of life with this illness from HELL, not a cure, but better control for SOME for us... enough of us... check out this group.

    People are doing yoga, walking, swimming, riding horse bare back walking, vibration machines, trainer, therapists, free low level weights, treadmills, lying floor exercises, exercises in bed, flat back benches and on and on and on.... with heart monitors, limits, plans and support.
     
    Last edited by a moderator: May 15, 2014
    horcrux and catly like this.
  2. Ayaju

    Ayaju *****

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    I hope this is legit because I am one of the lucky 5% of pwc's who can do some exercising, and it would be nice to be part of a group like this. I don't have any guidance or plan, I just listen to my body. My latest greatest find is a ReboundAir mini trampoline. Even very gentle "health bounces" where my feet don't leave the trampoline is healing; great for the lymphatic system. Sometimes I can jog on it!
    Judy
     
    horcrux likes this.
  3. lartista

    lartista Senior Member

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    Judy.... come on over....
     
  4. lartista

    lartista Senior Member

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    Thank You Judy!!!!!!!!!!!! We ME/CFSers need love!!!!!!!!!!
     
  5. alex3619

    alex3619 Senior Member

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    The exercise physiology behind this is being worked out, and has led to a probable diagnostic test, the 2 day CPET. I think in time most of us will be able to benefit from this kind of thing. In the meantime most of us do not have access to proper VO2max testing, or proper medical advice. I would suggest it would be great if this group could produce a yearly summary report to let the general ME and CFS communities know what is happening, even if its just a brief blog.
     
    leela, Valentijn, ahimsa and 5 others like this.
  6. WillowJ

    WillowJ Senior Member

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    During a remission I could have done something like that. At other times doing stuff like that (very gentle exercise on a regular basis) caused relapse.

    I have always thought treatment first, then we could happily increase activity, and this is what it looks like is happening here, so more power to those of you who are able to do this. :)
     
    Last edited: May 3, 2014
    Wildcat, Valentijn and rosie26 like this.
  7. SOC

    SOC Senior Member

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    This, of course, is a critical factor.
    Level 6 on the EIPS is:
    So this activity/exercise resource is for PWME in the mild category. On Dr Lerner's scale, this is the first level in the Recovery stage.

    Congratulations to all PWME who have achieved this level of wellness! Once a patient can work full-time, and do limited housework and social activities, I think an appropriate safe exercise program is a good idea. Until that time, activity management should probably be aimed at activities of daily living.

    Good luck to all our mild colleagues involved in this project. I hope to join you one day. :)
     
  8. Allyson

    Allyson *****

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    Exercise - for me it is important that it be recumbent or in water - plates or aqua are great

    Anyhing involving lots of standing.... like walking will cause payback due to the OI exacerbation and POTS


    Ally
     
  9. lartista

    lartista Senior Member

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    Did you join Ally? Come on over... a lot of people do stretching on the floor, in their bed... breathing exercises....
     
    Last edited by a moderator: May 15, 2014
  10. golden

    golden Senior Member

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    Clear Light
    I am nowhere near able to do a full time job plus housework and socialising. But I am up and about. And have been focusing on exercise.

    Could you post the safe exercises on here for me please as I dont have facebook...
     
  11. lartista

    lartista Senior Member

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    Klimas' exercise person Conni Sol, even at under a 6 wants you resting heart rate established. If you are going to vacuum, standing to cook a meal, walking, carrying groceries or anything... she suggest wearing your heart rate monitor. Once you VO2max is established, then you have target heart rates to not exceed. If you find yourself exceeding these target heart rates, then she wants you so lye down... she has you often start on your back, expanding your capacity slowly so that over time, you can stand longer without crashing... BUT HERE THE BOTTOM LINE.... If you don't have Klimas or one of these experts and you have not seen their exercise therapist persons... If some one wants to learn... they can join the group. So even if this is a dream, an idea, or an interest, come on over please... Good luck with your current program... but if you want to learn we are over 250 strong in 4 days.... its the most positive group of ME/CFSers you'll ever meet... I be waiting should you come... let me add MOVEMENT can be traded out with the word "EXERCISE"
     
    Last edited by a moderator: May 15, 2014
  12. lartista

    lartista Senior Member

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    https://www.facebook.com/groups/mecfssafeexercise/
    Come on over.... we are waiting for you!
     
  13. lartista

    lartista Senior Member

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    Judy... thanks for your kind words... WE LOVE HAVING YOU IN OUR GROUP! I loved a YouTube miniTrampoline video for you as after you commented on what you were doing.... people are now asking... THANK YOU!
     
    Last edited by a moderator: Jul 1, 2014
  14. lartista

    lartista Senior Member

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    Come and peek if you want... If you don't like it then leave the group.... kisses from Italy
     
  15. Ayaju

    Ayaju *****

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    Your enthusiasm is crazy good, @lartista !

    I am grateful for your group because it is fun! And I feel supported in my exercising efforts! And I made a bunch of new Facebook friends! Those of us who are blessed enough to be able to exercise need and deserve to be able to talk about it freely, without accidentally alienating those who can't. So, your group is awesome for that, among other things! I don't agree, however, with your "BOTTOM LINE" that there is any 'only' way to get better or to proceed with an exercise program, or that if we don't we can't get better. It always gets me into trouble when I think that way in life about ANYthing. But, hey, I do appreciate your New Yorkness!

    Judy
     
    Neala and Valentijn like this.
  16. lartista

    lartista Senior Member

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  17. lartista

    lartista Senior Member

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    Thank you sweetheart.... did you see how fast the group is growing? 256 in four days!
     
  18. Ayaju

    Ayaju *****

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    Cool. Should I register as individual or part of the group?
     
  19. lartista

    lartista Senior Member

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    let me clarify.... deconditioning... All the experts warn against that and maybe I should have stated it better... deconditioning is a dangerous downhill spiral... sorry about word choice... also I see the doctors using MOVEMENT as an offset to exercise because people understand "movement" and panic with the word exercise bu the experts are using both interchangeably... Thanks...

    I just went back looking for what I wrote and I wasn't referring to "exercise", sorry if it sound that way. What I was trying to say is there are TOO many ME/CFSer who read here and there, and then write like they are experts, when they have not even been seen by experts, have not been educated by a TRUE ME/CFS specialist, have not had NKC functions tests, Vo2 max test and it is them spewing off their mouths as "experts" on exercise, movements, pacing techniques, drugs, and recovery while they have not even been seen by a truly knowledgeable doctor... I still may not be stating it clearly... I hope that is clearer but I am not sure...
     
    Last edited: May 4, 2014
  20. Esther12

    Esther12 Senior Member

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    I reckon it's best for people to just do whatever they want - I keep changing my own views of exercise for myself, and have recently started doing brief bits of more demanding exercises to work on muscle tone (after having previously ignorantly advised others against this approach!). Despite having tried all manner of different things, I've not found anything that has really helped improve my health - although if it's not been harmful one would thing that there must be some benefits to being able to do some exercise.
     
    Last edited by a moderator: May 15, 2014
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