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What Will Happen To M.E.?

Discussion in 'General ME/CFS Discussion' started by Karenironside, Apr 3, 2014.

  1. Kina and rosie26 like this.
  2. Today's blog: What Drives You?

    Helping to answer the question to myself - What drives me not to give up?

    golden likes this.
  3. redviper

    redviper Senior Member

    I would say vengeance for myself and my family. I want to reward those few who have stayed loyal to me during the course of my illness. Similarly, there are also a few people who have actively tried to sabotage me in spite of my illness, so getting the last laugh there is probably my driving motivation - day in and day out.

    I think it's different for everyone though, but whatever it is, make sure that you tap into your energy and let it push you. We need all the extra boosts we can get with this illness.
    Karenironside and golden like this.
  4. I agree totally except for vengeance on those who tried to sabotage. I'm lucky I've yet to meet that.
  5. Dreambirdie

    Dreambirdie work in progress

    N. California
    Art is my personal savior, particularly painting and music. That's where my focus is.
    Karenironside and golden like this.
  6. golden

    golden Senior Member


    edit: THought better of the one word answer - I am currently feeling totally insprired by the low fat raw vegan diet I am on this last month. Even though things have gone chip shaped a few times :) I admit.
    Karenironside likes this.
  7. SDSue

    SDSue Southeast

    Karenironside likes this.
  8. peggy-sue


    The folk who care about me.
    I keep going for them.
    Karenironside, Roy S and SDSue like this.
  9. Ema

    Ema Senior Member

    Midwest USA
    Cricket and Ivey.
    Karenironside likes this.
  10. A.B.

    A.B. Senior Member

    I would be cautious making any conclusions based on feeling better for a couple months. Relapsing-remitting symptoms are common. Patients experience periods of time where they feel significantly better and can do more. They might feel that the improvement is attributable to whatever treatment they were doing at the time. When the relapse occurs, they then blame themselves. The real efficacy of a treatment is seen over longer periods of time.

    I'm also not sure I agree with using the word boom and bust, or the idea that one can exercise and pace themselves back to health.
    Tito and SilverbladeTE like this.
  11. The way I see it, you have to take every single positive that comes your way and rejoice in it. Refusing to do that leads (in my opinion) to misery and negativity. Anyone who has done any research about their illness will be very aware of the ups and downs and that just because you are on an up doesn't mean you won't have very serious downs again.

    The term boom and bust is widely used and I think particularily applicable. You feel great so unless you are careful you do far too much, if I do this, I get to the point where I suddenly can barely take a step or pick something up. To me this is definitely bust.

    Again there is lots of controversy about exercise an M.E. I totally agree that a program that is not incredibly flexible that doesn't respond totally to what your body is telling you is absolutely dangerous. I can not see however how if you do no very careful exercise at all, how you can ever get your health back to a point where you can work and generally lead a normal life.

    Now I know there are lots of people who claim that there is no way you can get better from M.E., that once you have it, that's it for life. On the other hand, there is plenty of evidence of people who have had M.E. and gone on to live successful lives. These people got better by very very slowly and very very carefully extending the range of activities they could do without having payback. This is all that I am trying to achieve.

    It is very clear to me however that a cold, a stressful situation etc could put my health back to where it was two or three months ago. If and when that happens, I will very very slowly begin the slow path back to where I am today. I may do this a hundred times or maybe just a few times.

    The idea however that not being positive, not trying to take control of the situation you are in, of not doing all you can (even if that means doing very little) to improve your health is repugnant to me. As long as your long term overall direction is upwards then there is nothing to be negative about.
    Artstu likes this.
  12. ukxmrv

    ukxmrv Senior Member

    But what if your long term overall direction is downwards or static or goes up and down over decades.

    It was Dr Ramsay, not just any old "people" who spoke about his patients going into remission and then relapsing. Also about his chronic patients.

    After 30 years of having this disease I only wish that I knew what I know now. Exercise has been a total disaster for me and when feeling better in the more functioning time still a disaster (and also a complete waste of that valuable time).

    You are spending time exercising and possibility expending activity that will all be lost at the next virus or exertion too far. I've done this about ten times now and regret each time.

    This is time spent when you could be learning a language, talking on the phone to friends, learning to cook and so many other things. Over decades of the disease I would value these accomplishments far more than time spent pushing my body until the next terrible relapse occurs.

    Just another view and I hope you do better luck than I have.
    Sidereal, Tito, justy and 1 other person like this.
  13. A.B.

    A.B. Senior Member

    Research has been done on this, and there was no evidence for boom and bust behavior in CFS patients. You might not know this, but boom and bust behavior refers to a hypothetical perpetuation of the illness with unhealthy compulsive behavior where people drive themselves into exhaustion from doing so much. You shouldn't use this term unless this is what you actually mean.

    Are you referring to the PACE trial? There is little reason to believe the claimed results actually apply to the illness ME/CFS.

    I'm not trying to dissuade you from doing what you're doing, we all need to make our own decisions and experiences, I just think it's important that you are made aware of certain important details.
    Wildcat and Artstu like this.
  14. But what if going for a walk, sometimes with friends sometimes alone, gives me huge enjoyment. What if seeing myself progress gives me the strength to know I can get through the next down. I've had downs but I find each one gets easier the more positive things I have to reflect on. I feel for me to say it's not worth trying to get better through gentle exercise would negate a sense of enjoyment I would get through other activities.

    However the reality is, recent research shows the M.E. Is more likely than not just an umbrella term for similar illnesses. Therefore what works for me could be very dangerous for somebody else even though officially we have the same disease.

    You are also in a situation where you have been ill for much much longer than me so you may be right and I'm not trying to be evangelical. I know me though and not doing all I personally feel I can to make progress and not being determined about it would do more damage to me psychologically than giving it a go.

    I should also add my system has been approved by a real M.E. Expert who has supported hundreds if not thousands of people with m.e. I am not doing something completely without advice as this potentially could be dangerous.
    Kina likes this.
  15. I do appreciate your advise but I have done lots of research and so my ideas are backed up by what I've found.
  16. A.B.

    A.B. Senior Member

    Who would this real ME expert be? By the way, I don't think the danger here is excessive exercise. It doesn't sound like you're pushing yourself too much. I think the danger is the illusion of being in control.

    And what kind of research do you believe supports your ideas? The research done by proponents of graded exercise therapy shows it doesn't actually lead to people being able to return to work, function better, going off disability benefits, etc. It leads to people giving better ratings on a questionnaire, probably because they're taught to see everything positively (rather than just seeing things as they are).

    If I could go back in time and give myself advice it would be: don't try to solve your problems through willpower, and get some very thorough lab work done sooner rather than later, view it as biochemical problem and act accordingly.
    Last edited: May 19, 2014
  17. Kina


    Sofa, UK

    You said your sleep has significantly improved -- excellent news. Did you do something specific for that. I love your blog by the way -- excellemt writing. :):)
    Firestormm and justy like this.

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