Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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Excerpts: Exercise quotes from the Big Talk

Discussion in 'General ME/CFS News' started by _Kim_, Apr 16, 2010.

  1. _Kim_

    _Kim_ Guest

    The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

    ETA: I added quotes from the Big Talk spin off threads as per CBS' suggestion. All of the following quotes were among the results when I searched each thread for 'exercise'. If I've snipped too much of anyone's posts, let me know and I'll edit bits back in.

    I want to thank all of the articulate writers that are represented here. Special thanks to those that were able to write about their personal experiences with exercise.

    Cognitive Behavioral Therapy and Graded Exercise Therapy
    and you cannot speak of one without addressing the other

    !!! Are Dangerous !!!

    There are grave risks that it will worsen symptoms for PWC
    There are no means to predict who it will harm
    It could be you
    It could be me

    For a mere 10-20% chance of improvement
    You risk 100% decline


     
  2. _Kim_

    _Kim_ Guest

    The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

     
  3. _Kim_

    _Kim_ Guest

    The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

     
  4. _Kim_

    _Kim_ Guest

    The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

    ETA: Added the most recent posts from this thread

     
  5. CBS

    CBS Senior Member

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    Kim,

    Thanks for putting this together. I know that this might be suggesting a significantly larger task but this discussion took place on many threads along side the "How's the CAA Doing?" thread. Some (such as myself) have tended to stay away from that thread, especially for a time.

    Here are some other threads that include what may be important contributions:

    Self Help Strategies - NOT CBT - We need the CAA to help!

    The CAA Pamphlet to Educate Doctors

    CAA is Listening

    CAA recommends, to me, questionable article on pacing. March 2010

    And lastly, the recently revised Clinical Advice given by Dr. Montoya to his ME/CFIDS patients:

    Clinical Advice

    While in recovery, please do NOT overexert yourself.
    • A lot of our patients report that their level of functioning feels like a rollercoaster. This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery. As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash.

    • We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery.

    • Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder). As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover. Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired. This may prevent the patient from fully regaining his or her cognitive and physical capacities. Theoretically this is how overdoing it and the subsequent crashing which results may have a long-term negative effect on health.

    • Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her. Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes. We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

    If you start to feel better…
    • After 3-6 months of experiencing the benefit of treatment, it may be appropriate to gradually increase levels of activity. Again, it is important to ensure that this is a very gradual process. If the patient experiences a crash during this time, please reduce activity level until functioning is stable again.

    • Please take it easy. Patients can slowly begin to increase their physical and cognitive undertakings in VERY small increments. Please avoid all stressful situations and drastic changes in lifestyle.

    • Week by week, patients can slowly start to add small things to their daily routine. Please make sure to proceed slowly, and make sure new activities will not lead to a crash.

    • We believe that the full recovery process may take between 1-2 years.
     
  6. _Kim_

    _Kim_ Guest

    Good idea CBS. Here's a few quotes from the 1st link in your list.

    Excerpts from: Self Help Strategies - NOT CBT - We need the CAA to help!


     
  7. _Kim_

    _Kim_ Guest

    Exercise quotes from The-CAA-Pamphlet-to-Educate-Doctors

     
  8. _Kim_

    _Kim_ Guest

    Exercise quotes from The-CAA-Pamphlet-to-Educate-Doctors

     
  9. _Kim_

    _Kim_ Guest

    Exercise quotes from CAA is Listening

     
  10. _Kim_

    _Kim_ Guest

    Exercise quotes from CAA recommends, to me, questionable article on pacing. March 2010

     
  11. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Thank you so much, Kim.

    This is a remarkable gathering of patient experiences eloquently told. It is both heartening and heartbreaking to read. I feel honored to be a part of this remarkable group of individuals who are striving daily to live life to its fullest in the midst of such devastation. I'm also incredibly saddened that all of these carefully worded posts have been written to persuade, not an uncaring public, but the very people who should be our biggest advocates.

    Thank you everyone for sharing your experiences with all of us. We at least are hearing each other.
     
  12. _Kim_

    _Kim_ Guest

    Exercise quotes from Design a Brochure

     
  13. Jerry S

    Jerry S Senior Member

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    Chicago
    Thank you, Kim, for collecting the invaluable writings of the most thoughtful and articulate among us. Well done.
     
  14. _Kim_

    _Kim_ Guest

    More exercise quotes from Time for the Big Talk: How's the CAA doing?

     
  15. Orla

    Orla Senior Member

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    Thanks Kim for going to all this trouble.

    Orla
     
  16. fingers

    fingers Senior Member

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    SW Endland
    I can't say any more than Orla has said, Kim. Respect and gratitude.

    After all the years I have been away from this - (a) because it never got me anywhere, and (b) because I have been able to function and live a life for at least part of the time, I cannot belive that this is still happening. I was sure that things would have moved on. I have not been victim of any of this. In a way, quite the opposite, I wasn't diagnosed with ME for a long time becasue I could still function. I have been diagnosed with ME, but it's only an opinion. Maybe I don't have it.

    I'm really sorry to all of you if I have a very trivial condition (maybe the fact that I only have 10% of previous function is all down to age?), but I still have some energy, and I UNDERSTAND (because of PEM), which is what the medical profession lacks.

    Through this forum we can, and will, make a difference. We cannot remain as pawns in the game. Those of us who still have energy must act, and we can be steered by those who can only think and type. Power. Because no one else will do it for us.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Very vivid. My experience is that pushing through ones symptoms through exercising is basically a recipe for disaster. It just does not work. Of course that is what post-exertional malaise is all about.
     
  18. Gerwyn

    Gerwyn Guest

    I dont think that anyone will mind Cort.My concern I that Drs Top and Tail things.They are very likely to draw erroneous conclusions from the way the CME is presented. If Drs suggest excercise to patients with severe ME(which most drs dont understand) by the time those patients experience exacerbation of symptoms it is too late the damage is done.That damage could cause a relapse which could last days,months or even years!Drs rarely reed the fine detail.They are highly likely to read the word excercise and interpret its meaning in the light of their prejudicial preconceptions and act accordingly.
     
  19. fds66

    fds66 Senior Member

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    Kim - you are a wonder. Thanks for all your hard work putting all this together.
     
  20. starryeyes

    starryeyes Senior Member

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    Kim - thank you very much for putting this thread together. It's very useful for us because we can come here to get quotes to use when we need to answer people who are pushing exercise on us and for the committee that's assessing the CAA's materials and possibly writing our own.
     

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