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

  1. SOC

    SOC Senior Member

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    Apparently you don't tick the box for PEM, which is a required feature for an ME/CFS diagnosis.

    No one is arguing that you got a "CFS" diagnosis in the UK. Many docs there use the Oxford definition, which does not define the illness we refer to here at PR as ME or ME/CFS. Sadly, doctors rarely do enough testing to eliminate other fatiguing illnesses before they slap a CFS label on people.

    Have you been adequately tested for various forms of dysautonomia, for example? Your symptoms sound much more like dysautonomia than ME/CFS. Dysautonomia can result from a number of conditions, of which ME/CFS is one, but dysautonomia without other defining symptoms of ME/CFS is NOT ME/CFS.

    This might help: Clinical Evidence of Dysautonomia

    This suggests some type of exercise intolerance, which is not PEM. In many cases, exercise intolerance is treatable.

    If you don't want to accept long-term disability, then don't accept an ME/CFS diagnosis. I don't see why you want to hold onto a diagnosis which means long-term disability when the alternative is to seek out alternate diagnoses that are likely to be treatable. Wouldn't you rather be treated and get on with your life?
     
    Last edited: May 2, 2014
    peggy-sue, MeSci and Valentijn like this.
  2. Artstu

    Artstu Senior Member

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    I agree in part. However I believe it is possible to reduce the impact eventually.

    I agree with that too, and it does happen to me also.
     
  3. Artstu

    Artstu Senior Member

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    I agree, I'm not saying that at all.

    I have to do all that too. I have improved through exercise, I'm still ill, but being fitter helps me cope better with the illness.
     
  4. Artstu

    Artstu Senior Member

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    I believe I do.

    You make it sound like I have a choice.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You have a choice but it would probably mean going outside of the UK health system. Difficult and costly but may be worth it if you can discover some "treatable" things.

    Sushi
     
  6. maryb

    maryb iherb code TAK122

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    @Artstu
    I'm glad to hear you've improved that's what we all want after all.
     
    peggy-sue and Artstu like this.
  7. Artstu

    Artstu Senior Member

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    Thanks. That's all I'm trying to share here.
     
  8. SOC

    SOC Senior Member

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    Do you understand the difference between unexplained fatigue, exercise intolerance, and PEM?

    Do you have "Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms"? Do you have "prominent symptoms primarily in the neuroimmune regions" as the result of exercise? Does your relapse from exercise last days, weeks, or longer? These quotes from the International Consensus Criteria for Myalgic Encephalomyelitis describing what we call PEM. Do you get flu-like symptoms from exercise? Does it take weeks to recover from exercise? If so, how are you managing high intensity bike riding with any degree of regularity?

    This is exercise intolerance (from Wikipedia):
    You do have a choice. You have a choice to investigate whether you have a serious illness that is causing your problems but may be treatable. Why would you not want to look into it?
     
    peggy-sue and Valentijn like this.
  9. Artstu

    Artstu Senior Member

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    I don't much subscribe to labels that sufferers hang on to like PEM, most seem to want to name every symptom as justification for the way they feel, and if you want to do that then fine. I prefer to view symptoms as an exaggeration of normal responses to things. Repeatedly exercising has in my case lessened the effects of what you want to label PEM.

    It's amusing that you should suggest I have exercise intolerance when you know I have the ability to exercise to a high intensity. It simply doesn't fit with my symptoms.

    Of course I wish I had a treatable illness, so I could get my life back. I'd rather not of course have any illness. ME/CFS IS sadly the illness I have.

    Someone suggested I accept I'm different than other sufferers, of course I can see that. What I'm asking is that you accept what I can do is possible with this illness. I also genuinely believe other sufferers can achieve what I have achieved, which comes back to closed off thinking.

    So yes perhaps I have indeed found The Holy Grail as someone suggested.

    Apologies again to Valentjin.
     
    Last edited: May 3, 2014
    maryb likes this.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It's not so much a matter of quantity as quality. Mr. Valentijn and Mr. maryb sound like a couple of the good guys. :woot: ;)
     
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  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I doubt very much that there is any kind of study looking at folk with ME for 6 years. We do not get that kind of time and attention. :(
     
    peggy-sue likes this.
  12. Valentijn

    Valentijn Activity Level: 3

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    Then it isn't PEM, and it isn't what we label as PEM. You are incorrect in calling it PEM, though that certainly isn't your fault with all of the horrible things they've done to the definition of ME/CFS in England.

    At best (or worst?) you have atypical ME/CFS, lacking PEM. That doesn't mean you're not part of the community, etc, but you really need to comprehend that exercise does not help us at all. It's harmful for patients with typical ME/CFS.

    Consequently, please understand that your experiences regarding exercise are not applicable to the typical ME/CFS patient experience. Hence it can be very harmful if a typical ME/CFS patients makes a misguided attempt to duplicate your efforts.

    And don't worry about the thread hi-jack ... it's an important issue!
     
  13. Artstu

    Artstu Senior Member

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    With the greatest respect I disagree entirely with your thinking. I think it best that I leave it there and bow out again.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think it would be really helpful if @Artstu listed his symptoms, including those that are exacerbated by exercise, and put some info in the Information section of his profile as many of us have done. That way we can look at each other's posts in the context of their symptomatology and decide whether their experience may be applicable to us.

    I think that most people on here have detailed their symptoms at some point, but I don't recall Artstu listing his. Not being nosy, but it can be difficult to make sense of some postings without that kind of info.
     
  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I've never heard anyone call PEM a label we've given ourselves before and sounds like something a CBT clinic would say. PEM is just a fact for people with ME.
     
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  16. peggy-sue

    peggy-sue

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    PEM is the defining feature of ME; it is the strangest and most illogical of things - completely at odds with normal physiology - comprehensible only to somebody who has it or who has measured it in somebody.
     
    rosie26, Sushi, MeSci and 2 others like this.

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