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Discussion in 'Lifestyle Management' started by Valentijn, May 20, 2012.

  1. Artstu

    Artstu Senior Member

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    Yes I've been through this all with you several times before :( Note to self again, don't try and share your experiences with those with closed off thinking.
  2. SOC

    SOC Moderator and Senior Member

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    It's not closed off thinking. It's proper diagnosis.

    Most of us would be thrilled to find out we don't actually have ME/CFS. If I were in your shoes, I'd be looking for a proper diagnosis, although iirc you are in the UK where misdiagnoses with "CFS/ME" are rampant and getting a correct diagnosis is difficult.

    Suggesting that people with ME/CFS as defined by the CCC or ICC can exercise at high intensity with only physical and mental fatigue as a consequence shows a lack of understanding of the illness. It is also insensitive.
    MeSci, peggy-sue and Valentijn like this.
  3. Artstu

    Artstu Senior Member

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    I don't agree. Suggesting I don't have the illness is what I find insensitive and closed off thinking about what it is possible to do whilst having this illness.
  4. peggy-sue

    peggy-sue

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    Nobody is suggesting you're not ill - just not ill with the same illness.

    That's why you really do need to try to find out what really is wrong - there is a chance there is a cure for you.:thumbsup:

    Nobody with ME could do high intensity exercise in the first place.
    Folk with ME cannot make the biological shift from anaerobic metabolism into aerobic metabolism.
  5. Artstu

    Artstu Senior Member

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    I beg to differ. I really do have this illness, I wouldn't be on this forum otherwise. anyway who says you can't exercise at such a level with this illness? or should I say where is the evidence of this?
  6. peggy-sue

    peggy-sue

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  7. Artstu

    Artstu Senior Member

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    Thanks, I'll have a look. Apologies to Valentijn too.

    Since your little run have you tried exercising since?
  8. Artstu

    Artstu Senior Member

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    I've seen that. However what I want to see is a 6 year study that shows someone with ME/CFS can't make significant improvements in their physical ability through exercise alone? See the point I'm making.
  9. peggy-sue

    peggy-sue

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    So you support the notion of graded exercise therapy?
    That does seem to be what you are saying!

    I have never deliberately tried to do anything approaching exercise since becoming ill - my body does not do aerobic metabolism.

    I got a warning from that stupid "run" (more of a jog) not to try to do anything aerobic, but it's not as if life hasn't chucked the odd situation at me.

    Any form of exercise - attempt to reach aerobic levels, results in my pulse racing and my blood pressure dropping and tremendous lactic acid pain... followed a week or so later by a big PEM.


    Before I got sick, I did 5 hours yoga practise a week and went hillwalking at weekends, I was ultra-fit and enjoyed exercise just for it's own sake - movement that was so easy was a joy.
    Sushi and Valentijn like this.
  10. Artstu

    Artstu Senior Member

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    Of course I think we should all be exercising, and to some degree if possible an increase in the amount you do should be the goal.
    GET is based on an assumption that we don't have a physical illness, and the speed at which you're supposed to increase the duration of exercise is ridiculously fast.

    I've done GET and did actually see a decrease in my ability, a lot of it came down to the way I reacted emotionally to the ridiculousness of it all. As anyone will know with this illness we only perform well when everything is just so. The negativity of it all was taking the edge off how I was feeling.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You may find this thread interesting, especially the stuff about Julia Newton's in vitro muscle study. It shows that even outside the body, our muscles behave abnormally. Hordes of us know from bitter experience that exerting ourselves beyond physical comfort has adverse effects, sometimes long-term and even permanent. We can go from mild illness in which we can work full-time to being bedbound and dependent on carers. This is one of the very-unusual aspects of ME.

    That's why I worry that people with ME may follow your advice and suffer the same fate. I have been life-threateningly-ill twice due to over-exertion.

    There are numerous illnesses that have similar symptoms to ME which can be diagnosed and treated successfully, which is why I so agree with @peggy-sue that you should seek a formal diagnosis. There is anaemia, liver disease, Ehlers-Danlos syndrome, Lyme disease, coeliac disease, Behcet's disease, and many more.

    Many of us - myself included - have been really excited when it appears that we have something treatable, only to find that tests proved negative and we are still stuck with the trivialised, neglected diagnosis of ME/CFS. Who would want to be in that club? I know we are a great bunch :D but even so...

    Then some have found, after years of being discarded into the ME/CFS 'wastebasket', that they really do have something different and treatable.

    I know that others too have questioned your self-diagnosis as your pattern of symptoms doesn't seem at all typical. Although I am only moderately affected, I have a very high percentage of the CCC criteria that I linked to, which is regarded as the nearest thing to a gold standard in the view of most patients and knowledgeable medics.

    If we seem to be negative towards you it's not intended to be so - it is just so important for your sake and for those who read your messages that your diagnosis is correct.
    Sushi, SOC, Valentijn and 1 other person like this.
  12. peggy-sue

    peggy-sue

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    And it's so important for you!

    If you have something curable you don't need to be stuck with this wastebucket diagnosis.

    I've mentioned this before - I have a friend who was officially diagnosed with CFS. He lost 10 years of his life to that diagnosis.

    He had had heart failure all along. He had needed a pacemaker from the start. When he finally got his pacemaker - he was cured.
    He is now rock-climbing again. How's that for a bit of exercise?:)
    Sushi, Valentijn and MeSci like this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    and a friend of mine was diagnosed with heart failure and eventually turned out to have pneumonia! He and his friends had been worried sick. I had piles diagnosed as enteritis. Another friend self-diagnosed (for years) with psoriasis and turned out to have eczema.
    peggy-sue likes this.
  14. peggy-sue

    peggy-sue

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    For my first presentation of eczema I was prescribed a course of griseofulvin - a horsepill sized systemic antifungal drug, which my gp assured me was safe to take with alcohol. (it's not, it's seriously contraindicated).
    No tests to see if it was a fungal infection, and the pills put me on another planet (I was still drinking then).

    Fortunately, one of the chaps who worked beside me was a Professor of Clinical Pharmacology, so I ran along to John and asked him what the heck was happening to me.
    He threw a fit that I had been prescribed griseofulvin at all for a fungal infection, it was an old cheap drug which he said should not be used at all.
    Quite apart from the fact that I had eczema, not ringworm.
    Fortunately, John also took me straight to dermatology to see a colleague, who treated me properly there and then.

    Doctors are not great at diagnosing things.
    Valentijn likes this.
  15. peggy-sue

    peggy-sue

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    I would doubt very much there exists a study looking at folk with ME doing exercise for 6 years.

    Folk with ME cannot exercise. They would all drop out, sick.
    Valentijn likes this.
  16. Artstu

    Artstu Senior Member

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    I haven't self-diagnosed myself. I've had the full battery of blood tests required for a referral to a CFS clinic done twice now. I tick the CCC boxes for a CFS/ME diagnosis.

    I could go back to the doctors and try a clean sheet diagnosis, but I feel sure the result would be the same.

    I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.

    I just don't understand why you can't accept what I'm saying, and always dismiss me as not having the same illness.
  17. Artstu

    Artstu Senior Member

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    I refuse to accept that. I dread to think how incapacitated I'd be if I took any notice of those sorts of statements.
  18. Valentijn

    Valentijn Activity Level: 3

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    If you can't understand that exertion makes us much sicker, than I can't fathom how you could have ME. Any exercise either comes at the expense of other, more necessary, daily activities, or it triggers intense disability lasting for days or weeks.

    We feel a bit better when we rest more. We feel much worse if we try to push our boundaries, at all. If that isn't happening to you, I can't understand how you would think your symptoms could be ME.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Maybe just accept that you are different from most of the ME patients here--for whatever reason? :confused:

    I think people are reacting to the suggestion that exercise would be helpful for most of us, since clearly it is not and, in fact, many of us can trace "our demise" to exercise.

    Sushi
    peggy-sue and Valentijn like this.
  20. maryb

    maryb iherb code TAK122

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    @Artstu
    just wanted to say, I too was fit before I got ill, I was one of those annoying people who used to skip up the stairs whilst you were waiting for the lift.
    I push myself all the time even now, I don't sit in a chair 'being ill' this is the perception doctors have of ME patients and why they say you need to exercise. As if we are ill because we are unfit, This is so wrong.

    Doing small tasks around the home is my only way of keeping joints and muscles working at present, I can't manage walks as well but when I get over this bad period I will start doing 100yds again and so on .

    I do a little, say put the laundry in the machine and then rest, if I have a shower I sit down for at least half an hour to an hour before attempting to do anything else, I try to listen to my body, but even so it sometimes just screams at me STOP. At which point I cannot move from the chair for some time. This is what most ME patients do - its our own way of pacing.

    Some ME patients do work but they spend most if not all of their rest days on the sofa or in bed.

    I presume you were sicker and got somewhat better.
    peggy-sue and Valentijn like this.

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