The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Education for AF Sergeant with CFS

Discussion in 'Action Alerts and Advocacy' started by WillowJ, Jan 20, 2011.

  1. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    http://www.af.mil/news/story.asp?id=123239169
    Sergeant Neher has been diagnosed with FM and CFS, yet plans to train for and run a marathon to prove the diseases cannot control him. Gotta love his spirit.

    However, I think he's lacking good advice. Naturally, it's not coming from his doctor, who would have been given information based on Oxford studies (that's the CDC's preference).

    I can't get my comment to post (the site seem to think I'm using HTML; I removed foreign characters from one of the citations, removed the gibberish [page & volume info] from my citations, removed the web address from one of them, tried removing all the citations altogether, tried taking out parenthesis, tried taking out slash marks...)

    Could someone post something for him? I'm concerned his training efforts will end up like some people enrolled in GET; a permanent reduction in function.

    If it helps, this was my comment:

     
  2. kat0465

    kat0465 Senior Member

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    not a good idea

    willow,
    i can sure appreciate his umph! but i don't think hes got all the info he needs.just everyday pushing will make us sicker, i honestly don't know how he can train for a marathon!

    the cardiac thing is what scares me the most for him, someone needs to get him the info and fast!
     
  3. Snow Leopard

    Snow Leopard Hibernating

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    He either no longer/never had CFS, or this is going to end in tears.
    Lets be honest though, many of us in the past thought that we could just 'push on' with life after getting sick. The fact that we can't is only found through our frequent personal experience.

    He also has this page: http://www.caboolspace.com/profile/EddieNeher
     
  4. Desdinova

    Desdinova Senior Member

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    IMO That man never had CFS/ME. He has Fibromyalgia and Chronic Fatigue that often accompanies it. Although for me PEM was the next to last symptom to develop. That was a little over a year after I came down sick in December 2006. And many would say that I don't have CFS or ME of CFS/Me however you want to look at it since I manage to work. Even though I can do little else and send my weekends in bed. I can't help but wonder if this isn't the government trying to put out an anti PR campaign against the Push to legitimatize our viewpoints on CFS/ME in light of XMRV.
     
  5. CBS

    CBS Senior Member

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    I wonder how they'll cover it if he can't complete his training or if he suffers a serious/permanent setback due to over exerting himself.

    I wish him well but as a former distance cyclist (many double centuries) and back country snow pack analyst for our local avalanche association, I've paid dearly for similar efforts.
     
  6. 5150

    5150 Senior Member

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    i wonder who diagnosed this person with ME/CFS? certainly not doctors who work for the US Government, as our govt does not recognize this disease's existence.
     
  7. eric_s

    eric_s Senior Member

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    Maybe he does have CFS and will be able to do it, but i don't like the message this might be carrying (i haven't read the article and don't feel like reading it at the moment).
    When i didn't have CFS for a long time, i could still do sports too, as probably many of us. Maybe not a marathon, but enough. But i doubt he can ever get better like this and it might be dangerous, as others have pointed out.
    ME/CFS controls you anyway, you might not let it control what you are doing, if you are willing to push and suffer, but you don't have any control over how your body will react and how you will be feeling, in my opinion.
    I admire his strength of character, if he really has CFS, but we don't need to learn how to not let CFS control us and how to endure it, we need a treatment, already. As in any other illness...
    Btw, are there any number about wheter in CFS there is a higher percentage of people that have been doing sports like distance running, cycling etc. There seem to be many...
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    the thing is, we can't tell from the info in the article whether Sergeant Eddie Neher has only fibromyalgia and fatigue, or whether he also has ME/CFS. We do know doctors don't necessarily diagnose properly, and the signs and symptoms he gave aren't specific enough to tell.

    if he has ME/CFS, it seems to be in the early stages and for some of us, making an attempt at sports and pushing through is possible at some points (early stages, remission)... but the payback from trying that is horrible, awful... and maybe could result in permanent damage

    while it's true that there's nothing like the school of experience and hard knocks, maybe some information would shed some light on experience so the damage isn't as deep as it otherwise might be... again, if he was properly diagnosed with chronic fatigue syndrome and does have ME/CFS.
     
  9. beesknees

    beesknees Senior Member

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    (sigh) This makes me appreciate people like Michael J. Fox and Shaquille O' Neal. I've seen them interviewed and they will make a point to say that others with their disease are not as heathy as them or are unable to do all the things they can do. I think Sergeant Neher may be trying to be motivational but it comes off as insulting, not just to CFS suffers but anyone who is sick. I guess everyone with Diabetes, Aids, MS, Parkisons, etc. that isn't running marathons are just letting the disease win.

    His wife also has Fibromyalgia but she isn't running any marathons!!
     

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