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CFIDS AA: Guest Post: Dr Larry Baldwin on Post-Exertional Debility in ME/CFS

Discussion in 'General ME/CFS News' started by Firestormm, May 27, 2014.

  1. Firestormm

    Firestormm Guest

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    14 May 2014

    I can't see this has been posted on the forum. Some of the comments below the article are also interesting...

     
  2. taniaaust1

    taniaaust1

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    " In contrast to a vague description such as malaise, post-exertional debility would be a more appropriate term for this symptom. "
     
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  3. Bob

    Bob

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    I do think that the term "post-exertional malaise" increases confusion in relation to ME/CFS.

    When I first got ill I described myself as having a flu-like 'malaise', and exhaustion. 'Malaise' was the best description that I could think of to describe what I was experiencing. But I experienced it all the time, and not just after exertion. It was exacerbated with exertion.

    So I think 'post-exertional malaise' adds to confusion for people who aren't familiar with the illness, because it may lead people to think that malaise is only experienced after exertion. (I'll spare you the story of my 'expert' NHS consultant in the south of England who thought that I should experience symptoms only after exertion!)

    I think "post-exertional debility" is equally confusing.

    I prefer the term: "post-exertional symptomatic exacerbation", but it's a bit of a mouthful so "post-exertional exacerbation" would be OK.
     
  4. xchocoholic

    xchocoholic Senior Member

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    The second part of this article is mostly over my head but looks interesting. He has nocturnal myoclonus, gait problems and what I think is right foot drag. I didn't see him mention gluten ataxia but avoiding gluten eliminated my gait problems and right foot drag. I have no idea is this will work for him.

    Anyone know if he's experimented with biomedical treatments ? If not, Dr Wahls might peak his curiousity. Dr Hadjivassilou could explain this too.

    Tc .. x
     
    Last edited: May 27, 2014
  5. Marco

    Marco Old blackguard

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    We're all different but some interesting observations;


    Well that's a relief - I thought I was just odd :)

    Lucky man. A 20 minute personal phone call has the same effect for me.


    Whereas I either rarely catch any infections these days (well the last 29 years following 'onset') or I'm usually feeling so crappy that I don't notice.

    Definitely a heterogenous condition.
     
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  6. Nielk

    Nielk

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    @Marco
     
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  7. Ruthie24

    Ruthie24 Senior Member

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    @Bob "Post Exertional Exacerbation" acronym would be PEE? :rofl: Not sure that will help our cause. ;)

    Liked the article a lot. Thought it was very interesting.

    @xchocoholic the Trendelenburg sign he's referring to is a weakness in the gluteus medius (butt muscle) so not related to foot drag.
     
  8. lnester7

    lnester7 Seven

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    My only comment is that for those of us doing viral testing, symptoms variability has a lot to do with the active virus also, and sometimes with no activity been increased, a new set of symptoms appear. Example: When I had Parvo, the hands hurt so bad but not anymore. HH6V my brain issues correlates to the viral load.....
     
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I like Post-Exertional Debility a lot better than Post-Exeertional Malaise.
     
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  10. xchocoholic

    xchocoholic Senior Member

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    I'm trying to remember how my body used to react to walking.
    It's been 7, almost 8, years since I stopped doing this so bear with me.

    I didn't get out often and used a cart most of the time. I fell into anything near me if I wasn't holding onto something. If I went for a walk in the mall for instance, I walked next to the wall touching it often so I could balance myself on it. I still sway from time to time. I don't feel it happening but people around me dodge me. Lol.

    I typically only walked if I had a shopping cart to hang onto. I know my first sign was leg fatigue in both legs but quickly turned into my legs not remembering how to walk. I had to think move right leg, move left leg while leaning on the shopping cart.

    After a few minutes or 2-3 aisles, the right foot drag started with a numbing sensation at the exact same spot in the lower half my right shin that caused the top part of my right ankle and foot to feel numb. At that point I had to tell myself to raise my right foot high enough to walk.

    I can't readily relate to butt numbing but by the time the foot drag started I was exhausted physically, mentally and emotionally.

    What a pita that was. Tc .. x
     
    Last edited: May 28, 2014
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  11. Snow Leopard

    Snow Leopard Senior Member

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    This is actually a really good suggestion...
     
  12. Ruthie24

    Ruthie24 Senior Member

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    @xchocoholic - not to be too finicky here but Trendelenburg isn't butt numbing either per se. :) It might have had something to do with your "sway" however.

    When you want to move your left foot foward, your right gluteus medius (part of your butt muscles) needs to stabilize your pelvis at a level angle so that your pelvis doesn't drop down on the left and make moving your left leg forward more difficult. If the right GM is weak and/or has nerve damage and is unable to perform it's job appropriately it is called a positive Trendelburg sign on the right.

    Foot drop is a whole 'nother subject. :) Also makes walking very difficult and can certainly be seen in the same patient who has a Trendelenburg sign if there is a general cause for the muscle weakness or nerve damage as opposed to a specific injury to one nerve.

    Hang in there. Or should I say, hang onto something there? Especially if you're trying to walk? ;)

    Hugs!
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Hi @Ruthie24

    Thanks for explaining that. I'm still feeling puny so I didn't think to google it. Duh. I can't say that was one of my ataxia symptoms.
    Both legs were equally affected.

    I'm walking better now. Have been since Sept 2006. I hardly notice my swaying but I'm not sure others aren't seeing it. I'd love to have a video of me walking. Lol. My neighbors may think I'm an alcoholic.

    Tc .. x
     
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