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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Bedbound to Olympic athlete...really?

Discussion in 'General Treatment' started by AdamS, Jun 19, 2017.

  1. AdamS

    AdamS Senior Member

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    In the video below at 38m18secs Dr Lapp claims that two of his bedbound patients have gone on to be elite athletes, one at the Olympics and remarkably one Tour de France winner.

    I've watched the entire video, Dr Lapp seems like a nice guy who has vast experience in treating ME/CFS patients but to go from being bed bound to competing as an elite athlete, this seems almost impossible?

    I've read 3 examples in the past of patients who have recovered quite considerably by measuring heart rate and doing stuff like 3 minutes activity followed by 3 minutes rest until they could slowly do more:

    1.) https://www.peakendurancesport.com/...injuries-overcoming-chronic-fatigue-syndrome/

    2.) https://www.healthrising.org/blog/2...able-chronic-fatigue-syndrome-recovery-story/

    3.) http://www.recoveryfromcfs.org/chapter11.htm

    From a treatment perspective this seems like a slightly more scientific version of graded exercise, e.g using a HR monitor and being super careful to avoid crashes. It's nothing new as such, I just wondered what people thought about it seeing as the video is quite recent.

     
    Last edited: Jun 19, 2017
  2. ChrisD

    ChrisD Senior Member

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  3. AdamS

    AdamS Senior Member

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  4. Esther12

    Esther12 Senior Member

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    Olympic darts? Tour de France winner sounds less likely tbh.
     
  5. cb2

    cb2 Senior Member

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    I would defiantly try the poo implant if available esp from an athlete. i think it might be better and safer than the IVIGG from a blood supply..with alot of unknowns.
    i am going to try to listen to these videos too. thanks @AdamS and @ChrisD
     
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  6. Murph

    Murph :)

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    From a quick glance online I see Oscar Pereiro (2006 Tour de France winner after the doping disqualification of the guy who finished first) and Cadel Evans (2011 winner) both claim to have been affected by 'something like cfs'. In both cases after their victories. Perhaps something more like overtraining syndrome or post viral syndrome? Although, who are we to tell people they aren't sick. It's better probably to simply believe them.
     
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  7. Esther12

    Esther12 Senior Member

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    That shows me! I'd assumed that if someone who'd won the tour de France had recovered from CFS then I'd have heard about it. Thanks for checking.
     
  8. Webdog

    Webdog 84-91% are undiagnosed

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    I would think that if CFS sufferers were actually winning the Tour de France, lower ranked riders would be asking how they can get the disease. :oops:

    But seriously, I followed the Tour de France fairly closely around that time. In fact, I watched race stages in 2007 and 2010. Not once did I hear mention of any rider having "Chronic Fatigue Syndrome" or even "Chronic Fatigue".

    Overtraining was frequently talked about as a problem, but never CFS.
     
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  9. Alvin2

    Alvin2 Senior Member

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    i think its fake or they didn't actually have ME/CFS.
     
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  10. sarah darwins

    sarah darwins I told you I was ill

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    I used to find things like this really encouraging. Now I find them frustrating and wish doctors wouldn't come out with these vague anecdotal stories.

    Until we have a clear scientific description of this disease, or these diseases, it's pretty unhelpful. As comments here demonstrate, all you get are more questions and doubts.

    Being frank about it, when the psych crowd make anecdotal claims we rightly criticise them. When the Lightning Process etc put too-good-to-be-true recovery stories on their websites we're rightly skeptical. We should hold biomedical researchers and clinicians to at least the same standards.
     
  11. Chrisb

    Chrisb Senior Member

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    It will be interesting to see how Mark Cavendish fares this year after his reported illness. It might help one form a view as to how quickly one might recover from a glandular fever type illness, given the best possible advice.
     
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  12. Artstu

    Artstu Senior Member

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    Indeed it will be interesting. I had glandular fever (confirmed by test) in my early twenties and after a very brief spell of feeling a little unwell my health returned to normal within days.
     
  13. adreno

    adreno Homo neanderthalensis

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    Anecdotes. Unless this doctor consistently cures patients, a few examples are more likely to be cases of misdiagnosis or rare genetic freaks.
     
  14. AdamS

    AdamS Senior Member

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    Some great replies thanks!

    Despite my skepticism i'm going to try some low intensity walking every other day with planned rests in between to see if I can build my endurance a bit.

    Today I managed:

    14 minute walk to the park
    10 minute rest on a bench
    12 minute walk back home

    I started to feel symptoms come on as I walked even marginally too fast or up gradients, so I do seem to be quite sensitive to activity intensity (presumably because of increased metabolic flux). HR was around the 115 mark. Subjectively when the symptoms increased it felt like it was an issue with oxygen supply as well as energy.

    I'm not expecting to make any progress really, but if it gives me a slight mental boost or sense of control then that is progress...we shall see!
     
  15. Dechi

    Dechi Senior Member

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    @AdamS I have been measuring my heart rate variability for more than 1 year. I have been doing specially designed exercise protocols (very short) for almost as long. I have tried building my endurance. I've been wearing a watch that monitors my sleep, steps and exercise, and trying to find patterns with my PEM, but failed to do so. There is no predictable pattern, except an indirect correlation between sleep and symptoms. For 2 years I have been resting aggressively and been as careful as humanly possible not to overdo it.

    Guess what... 2 years later, I am actually getting worse. My threshold is lower, I get fatigued faster, my cognitive abilities are declining and PEM comes quicker now. I'm at the point where driving my car is starting to be a problem on longer distances.

    So do I believe you can have ME and be an olympic athlete after remission ? No, not at all. These people had something else.

    I wish you do too, and that you get better and better with your training.
     
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  16. AdamS

    AdamS Senior Member

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    Thanks Dechi! I don't think it's going to work for me either :( My body just doesn't tolerate exercise, i'm physically less able than my grandparents, which is crazy!

    I wonder if Dan Moricoli, Bruce Campbell and the other guy I linked to would have got better without the careful walking/resting programmes they followed. It does seem to me from reading their stories that they had many of the hallmarks of ME/CFS, rather than it just being 'chronic fatigue' or overtraining syndrome. As for the olympic athlete and Tour de France winner, I agree it seems that they had something else.
     
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  17. Dechi

    Dechi Senior Member

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    I've been watching the video in fast motion and I like 90% of what he says. The part where he talks about the 2 olympic athletes is very bizarre and doesn't seem to go with the rest of the presentation. He knows his stuff but this part of his speech takes away some of his credibility, I find.
     
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  18. Webdog

    Webdog 84-91% are undiagnosed

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    I like how Dr. Lapp deemphasizes pain in the video.

    One thing I'm trying to get changed is the diagnostic requirement for pain on the Kaiser Permanente website. This mandatory pain requirement is one reason my diagnosis was significantly delayed. Like the video describes, some of us have little body pain, just headaches.
     

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  19. Dechi

    Dechi Senior Member

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    @Webdog I never had pain either, except headaches and postural muscle pain.
     
  20. Webdog

    Webdog 84-91% are undiagnosed

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    As does his talk about hibernating "earthworms".
     

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