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Exercise and immunomodulation: what type of exercise IS good for CFS/ME?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Hip, Mar 3, 2011.

  1. Hip

    Hip Senior Member

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    I recently came across this nice little article, that said:

    Of course, as most people are aware, CFS/ME is characterized by an immune system pushed too far into the Th2 mode, and remission from CFS is often associated with a shift in back into the Th1 mode.

    So this above information on exercise, if correct, may explain why why graded exercise therapy (GET) has often made CFS patients worse: because in GET, by increasing the exercise intensity, it very likely pushes these patients' immune systems even more into the undesired Th2 mode.

    It would seem that what CFS/ME patients need is not this military-style graded exercise therapy (nor its pushy adjunct, CBT), but these sort of soft, gentle, flowing, and almost feminine exercises like tai chi, chi gong, and very gentle yoga, etc, which appear to stimulate the desired Th1 immune response.

    I think that chi gong is the most gentle and flowing; it requires very little energy to perform; the lowest energy of all exercises I know.

    Chi gong has been studied in China for its curative effects on diseases.

    So such gentle exercises may be a good adjunct therapy for boosting Th1, in combination with other means of Th1 boosting, like immunomodulatory drugs and supplements (eg: Imunovir, oxymatrine, etc).

    I believe exercises like chi gong also work to calm the autonomic nervous system, by reducing activation of the sympathetic nerves ("flight-or-fight"), and increasing the the activation of the parasympathetic nerves ("rest and digest"). The
     
  2. Wonko

    Wonko Senior Member

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    I have to take with a pinch of salt a report where they consider 3 hours of bike riding to be intense exercise - if an activity is intense you cant do it for 3 hours - by defintion.

    IMO GET makes people worse simply because even if they recognise that they cant cope (not always easy to know your limits on a new activity) people are cajoaled into continueing anyway, and if they attempt to refuse they are lied to - anything to get them to continue.
     
  3. LaurelW

    LaurelW Senior Member

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    I did restorative yoga for a while and it really helped calm down that nervous system overdrive feeling.
     
  4. pken

    pken

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    I find walking at whatever pace is comfortable to be a good thing. I try to go out for a decent walk every day and while I don't feel significantly better most of the time (in energy terms) I don't feel worse either. Tired but not worse in the way that stress wipes me out.

    When I started I used my phone which has GPS to graph my speed. I was curious really but amazed to see that even though I thought I was keeping a constant pace, nothing could be further from the truth. There's a definite cycle. Maybe this makes the case for NOT using a treadmill which forces you to keep a constant speed. I think graded and "forced" exercise is hopeless - we need to listen to our bodies, not experts. And there's absolutely nothing natural about running, unless you're being chased by a tiger.

    I've never been able to get on with yoga myself because although it feels sort of gentle it also feels regimented, but to each their own of course. Probably what's most important is to do something you like, rather that something that should be good according to a trial or a study or what works for somebody else.
     
  5. RestingInHim

    RestingInHim Realist

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    tai chi has helped me more than anything else. my neurologist explained that because it requires concentration, it helps the mind to focus...a problem for those with chronic pain. i have found this to be true. even though it requires mind and body...it has benefitted instead of causing pem. even when i'm hurting badly, it helps. one thing...i can't do it barefoot (i have peripheral neuropathy too). very well fitted running shoes work best for me. they have a wider sole and more toe room. this, i believe, is a must.

    i attend a free class in my community. it's for "seniors" (i hate that term...i'm only 58!), but they let anyone attend. it is offerred through our community college.

    hope this helps!
     
  6. ukxmrv

    ukxmrv Senior Member

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    I found Chi Gong to be really hard to do and it created the same PEM as ordinary aerobic energy. It is very hard for me to stand up and maintain the poses used in Chi Gong. Any exercise that involves both standing and moving arms is the worst for me. Even standing to gently fold washing at home is a no-no.

    Anyone with blood pressure problems on standing is going to find standing exercise a problem and esp if the arms are used. My heart rate increases, blood pressure plummets and I can easily faint.

    I tried several different of these "gentle" therapies (Yoga, stretching, Thai Chi etc) and even lying down versions but found them all the same.

    In my case I have mainly viral symptoms, PEM and weakness so no anxiety or fight/flight reactions to calm down. No problems with focusing or relaxing. They didn't make me feel any better in any way sadly.

    As I don't have enough physical strength to bathe myself each day I would rather use the small amount on necessary things. In better times I tried these forms of exercise and always had severe PEM with no benefits.

    We are all different. Once heard of a ME group (pre-CFS) where some members could visit a gym and do a small amount of weight bearing exercise as long as there were no steps to the gym and they were taken there by car and home to rest straight away.
     
  7. Enid

    Enid Senior Member

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    Thanks for the article Hip. It's all so personal and presumably dependant on the "stage" of the illness. Pushing myself never worked but relaxing "activities" including "inactivity" as able seemed to suit best. Any boom resulted in "bust" and back to square one. Very interesting about what is happening to the thyroid hormones.
     
  8. IamME

    IamME Too sick for an identity

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    Having a bowel movement is too much for me, and I probably shouldn't be typing this. What "exercise" would you recommend?

    ROTFL. (virtually)

    It's like saying what type of exercise is good for decompensated cardiomyopathy...
     
  9. Enid

    Enid Senior Member

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    IamME - Perhaps exercise is the wrong description. (Hence PACE useless). It was for me listening to one's body only known to you and try to find aids that only heal YOU.
     
  10. undcvr

    undcvr Senior Member

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    Rebounding is really good for cfs/me. If you are really sick, only rebound as much as you can, eg 1 min or 30-50 count. Jumping up against gravity does the work of lymphatic drainage for your body and relieves the stress on them. Its a very big deal. Unlike the circulatory system, it has no pump, ie heart, so it needs to keep doing the work itself. It some part of it is stagnant, it stays there and toxins accumulate.

    Rebounding is used by NASA.
     
  11. Hip

    Hip Senior Member

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    I don't doubt what you are saying ukxmrv. However, it is conceivable that you may using an incorrect mental approach to chi gong, yoga, etc - the mental approach is an important factor.

    So for example, when you move your arm in chi gong, there has to be a total but relaxed mental focus on the movement, and from this focus, after some practice, you start to find that you can move your arm almost effortlessly, with almost no energy. Most of the time we are too heavy-handed in our movements: we engage both sets of opposing muscles too much, so that a lot of energy is wasted in a movement. By relaxed mental focus on the movement, you find that the opposing muscles relax more, so the whole movement become much more energy-efficient, and feels softer. By mentally relaxing these opposing muscles, you are creating relaxation in the nervous system, which can be beneficial.

    Its like you become intimately aware of every physical sensation and nuance of an individual movement, as if it were the only thing in the world.

    If you take the normal macho, aggressive approach to chi gong, yoga, etc, then you just turn these into nothing more than "mindless" gym exercises, which they were not really intended to be. The correct approach is a soft, graceful, feminine movement - almost like a ballerina - but they crucial point is the mindfulness and focus on the movement. It is not how much you do, but how well your mind is focused on the body movements. You are focusing the power of mental consciousness on your body.

    But since you say you are pretty focused and relaxed anyway, maybe chi gong, yoga, etc is not going to be of that much benefit, in your particular case. I am just mentioning all in case it is helpful. You obviously know you body better than anyone, and ultimately if you do find that chi gong gives you PEM, then there is no arguing with that.

    I have to say, before getting CFS I used to find this mental focus very easy, and I did a lot of chi gong, yoga and meditation, purely for pleasure; but now with CFS, my foggy brain syndrome has drained away much of my focus and conscious attention, so I have difficulties in the mental focus area, plus I do get rapidly exhausted too. And I find that the sensitivity of my tactile sensations have be much reduced after getting CFS (no doubt due to nerve damage), so I find it harder to tune into the sensations of in my body, as chi gong, yoga, etc requires you to.
     
  12. Alice Band

    Alice Band PWME - ME by Ramsay

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    Sorry Hip, doesn't work for me either.

    I am relaxed and understanding of mind methods. Did these things before ME struck so very experienced. When the ME started the PEM got very bad and like UKxmrv the Postural blood problems set in as well.

    Sorry to hear that your focus has been drained away.

    Keep doing things that work for you and I hope that it gets better over time!
     
  13. Hip

    Hip Senior Member

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    I guess the PEM is very quickly and easily triggered.

    One thing I have been experimenting with – and don't laugh – is what you might call "non-moving chi gong"! What I do is try to apply the same focus of consciousness on the sensations coming from the limbs and body, as in chi gong, but without moving anything!

    You can do this lying down in bed.

    Since the benefit of chi gong appears to arise from the mindfulness more than anything else, this non-moving chi gong should work. In fact, I just remembered now that this body-awareness approach is a recognized type of meditation: vipassana meditation.

    It is interesting to note that quite a few people with CFS/ME on this forum do have a mystical/spiritual bent - even before they acquired CFS/ME. It makes me wonder why this might be.
     
  14. garcia

    garcia Aristocrat Extraordinaire

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    In theory it is a great exercise. In practice it is very stressful on the knees (even though mine was a bungee rebounder) and I got some PEM from it too. Had to sell my very expensive rebounder on ebay. If I were to buy one now I would buy one of those sit-in ones that Cheney recommends. Very expensive though.
     
  15. m1she11e

    m1she11e Senior Member

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    In the 29 years I have had this illness, I cannot say that I knowingly experience PEM. That is, unless I am just in a constant state of push/crash. I am active when I feel good and enjoy every moment of it. I NEVER fear a crash. I HAVE TO live out the good hours.

    I hit the lowest low ever about 2 years ago. I believe it was a downward spiral set off by a short trial of Valcyte and the antibiotics for Mycolplasmas, combined with a break up, and the big hit was a move into a brand new condo. I know without a doubt, the new building was the hardest hit to my health ever. I stopped all drug treatments and never recovered at all until a few weeks after moving to a "not new" condo.

    My point is...I have worked full time my whole life. (Until that LOW I just mentioned) I never went on these forums and never labeled myself with CFS. I didnt have the latest CFS/ME lingo to describe what I was feeling or a set of rules of things that might make me worse. I worked out whenever I could out of pure vanity. I ate very healthy and I pushed myself hard. It didnt impact me in a bad way at all. I can never say I crashed after any kind of exertion in the PEM sort of way. I got tired, but didnt suffer days later etc. I believe just studying health and trying to remain active and not studying " the general rules of my disease" is what kept me functioning for so long. I monitored my own body.

    When I moved into the new condo and got REALLY bad off, I could not work. I rarely could drive and just going down the 3 flights of stairs at my condo had me about to pass out many a day. I had not even a spark of energy at that time. A lady who was being treated for Lyme said her LLMD told her to work out with weights (or weight bearing) every OTHER day. He said your immune system drops the day you work out but comes up higher than it was the following day. (I know this doesnt address the TH1/TH2 shift) I PUSHED to do any kind of non aerobic weight bearing exercise I could manage in my own home. I did squats without weights. I lifted water jugs. I rested in between sets. At times I thought I couldnt do 5 minutes of it but I could and 5 would become 10 and so on. There were days the room was spinning but I "Squatted on." I have to say that it helped me more than just about anything I did at that time. I KNOW some people cannot. In my case I slowly could lift more, it improved my mood and I believe that it is one of the things that helped my dangerously low white blood cell count come into normal. I think the every OTHER day was key. Every day would probably have been too much.

    I know that we all are so tired and so sick of fighting our bodies just to get around and simply survive. Actually pushing it beyond that seems ludicrous, if not impossible. I do think that it can be helpful for more people than they realize though. Sometimes I think all this I read on these forums,. although helpful just puts thoughts into our head and we are scare to do anything.

    I cannot work out at all some days. Now that I am working part time, I never try to work out on the days I work. It helps me though without a doubt. I have to think that moving blood, oxygen and lymph (your bodies detox system and carrier of the immune cells) is VITAL. I believe that if I were to allow myself to lie around as much as I physically feel like, and did not push through, I would be far sicker than I am.

    Not saying this is for everyone. Just my experience. :)) NO, I dont feel it is even close to cure for this awful illness!!!!

    Michelle
     

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