Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Huff. Post: How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

Discussion in 'General ME/CFS News' started by Firestormm, Jun 29, 2014.

  1. Firestormm

    Firestormm

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    Nicely written article from the other day (I wasn't well enough to post at the time). It got a lot of reaction on ME Association Facebook

    Always difficult reading 'good news' stories when feeling crook and thinking that things can't get any better but on the other hand I do like to hear from people who are finding some success using simple methods that I have also found have helped in the past.

    Anyway, we are all different:

    Read more: http://www.huffingtonpost.co.uk/colette-bernhardt/walking-laurie-lee_b_5530135.html

    ME Association Facebook: https://www.facebook.com/permalink.php?story_fbid=712619132129081&id=171411469583186
     
  2. Valentijn

    Valentijn Senior Member

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    Problematic article, but good comments after it.

    1) The author had "CFS" for a grand total of one year before presuming that GET was starting to cure her. Post-viral fatigue is a possibility.
    2) No PEM is mentioned or implied.
    3) She sounds like she's still far from recovered, despite walking a lot.
    4) She's attributing her recovery to GET, which could be entirely coincidental if there actually is recovery.

    Basically she's completely ignorant about ME/CFS and is helpfully spreading her ignorance along with some nice photos. People like this annoy the hell outta me, because I can't blame them since they don't know any better, yet they can still be incredibly harmful to actual ME patients.
     
    Last edited: Jun 29, 2014
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  3. justy

    justy Donate Advocate Demonstrate

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    That facebook link is not working anymore - says page may be broken or removed?
     
  4. Sidereal

    Sidereal Senior Member

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    Sounds like PVFS which for some reason people insist on conflating with ME.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    sighs... I wish they'd stop only telling the postive GET stories.
     
  6. N.A.Wright

    N.A.Wright Guest

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    Seems like you need to be signed into Facebook for the link to work. Work around - copy and paste this http://www.facebook.com/pages/ME-Association/171411469583186 into your browser's address bar then login to FB and you should arrive at the ME page - article is now some way down.
     
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  7. Firestormm

    Firestormm

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    Links now replaced :)
     
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  8. Firestormm

    Firestormm

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    Hmmm...

     
  9. Firestormm

    Firestormm

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    Here's a couple I liked from the MEA Facebook page (not read the comments below the article yet):

     
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  10. Firestormm

    Firestormm

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    I see there is a reply from the author to the comments beneath the article that I am slowly reading:

    and a reply:

     
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  11. Kina

    Kina

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    The author of the blog does say in the comments section;

    I had great difficulty getting through the article due to all the flowery language.
     
  12. N.A.Wright

    N.A.Wright Guest

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    It's a hymn to Laurie Lee, the British Countryside and walking, as much as it is about illness - 'flowery' hits all the literary references, I guess that could be a bit opaque to a non Brit audience. For more on Laurie Lee: http://www.bbc.co.uk/news/uk-england-28015290
     
  13. Kina

    Kina

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    I know that @N.A.Wright , it just takes a huge amount of mental effort for me to read that kind of prose. I like short, sweet and to the point. I used to read 1-2 books a week (fiction) with no issues. I was a prolific reader, reading everything in sight. Now I can barely get through a short page of text and if the prose is all flowery and creative like that, I find it almost impossible. That's why I said what I did.
     
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  14. xchocoholic

    xchocoholic Senior Member

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    I'm currently in a crash from my walking regime. I started slow and made it to 40 minutes every day or eod. On my last walk about a week ago I was tired but pushed myself anyway. This would've been impossible when I had ataxia tho. Many of us fail the Rhomberg.

    I'm curious about what was stopping her from writing more than a paragraph at a time. Mental fatigue would be my first guess.

    I haven't been able to write legibly 99% of the time due to neurological problems. I'm not sure what the term for this is. But my brain doesn't connect with my hand to form letters for more than a few words on a good day. I've learned that if I write slow and concentrate on the shape of every letter I do better for a little on a good day. I can't keep doing it tho. Walking or any exercise made this worse not better.

    It's a pity some see ME as a pissing contest. I can't help but see symptoms for what they are. A failed Rhomberg is a sign that can't be ignored. Neither can dysautonomia. Or seizures. Or ? And yet it appears that many people discussing ME or CFS want to forget about these and focus on fatigue.

    Tc .. X
     
    Last edited: Jun 29, 2014
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  15. xchocoholic

    xchocoholic Senior Member

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    "In the brief spaces between my lie-downs, my loving but helpless parents arranged cushioned seats in the gardens, alight with summer blooms."

    Anyone else thinking she's never had to push herself so her concept of functioning never included that at times we have to ignore minor symptoms, like fatigue, and do what's typically required from responsible adults and sometimes children ?

    Not that everyone with cfs can push past their fatigue but it certainly sounds like she was pampered. I just wonder how often this happens. And are these the ones who respond to CBT or GET ?

    Tc .. x
     
    Last edited: Jun 29, 2014
  16. Valentijn

    Valentijn Senior Member

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    Yes, maybe that lack of pushing at onset is what allows some with PVFS to recover, while others who pushed themselves to stay active go on to develop ME.

    It would be rather ironic, since it's the pushers who end up being accused of malingering or exercise phobia, while the layabouts are congratulated on having the will-power to recover :p
     
    Last edited: Jun 29, 2014
  17. xchocoholic

    xchocoholic Senior Member

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    That too. How would those who've always pushed themselves know that this time, they needed to rest ?

    I don't remember hearing from my doctor that I needed to rest when I first caught the virus or whatever started all this. In fact I was encouraged to go back to work and given antibiotics for the green stuff I kept coughing up. Tmi. Lol.

    The nurse where I worked was getting tired of seeing me. We had to check out via her if we needed to go home. I looked like hell and my body temp was always below 97 so it wasn't a problem. My whole body fell apart quickly.

    I was thinking maybe this person didn't get the kind of ME that causes a multitude of neurological problems. I coulda missed it but I didn't see her mention ataxia, seizures, dysautonomia, pem, etc etc.

    I wonder how many "layabouts" are dx with cfs. Maybe those who recovered using cbt fit that description.

    Tc .. x
     
    Last edited: Jun 29, 2014
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  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Maybe she should appear on Dr. Oz, where they can fluff a few more pillows for her and take video of the countryside....cut to pics of inside of her colon. :nerd:

    It's Sunday folks, time to chill....It's a joke!
     
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  19. N.A.Wright

    N.A.Wright Guest

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    My reading impairments are much more variable, from 100% word blindness to maybe managing a magazine article of realtively difficult text of up to a couple thousand words at a sitting. I haven't read a whole book though in maybe twenty years but that's perhaps more about tracking memory rather than the effort of getting to grips with text or actually recognising words.

    What I have found, and it's an effect that applies to spoken as well as written language, is that familiar idioms and rythms are easier to deal with than the unfamiliar. In the case of Collete Bernhardt's piece, the rythm and also the real world references, supported by the photos provided a frame work which for me was supportive. I think that may also have been why some of the Facebook respondees were enthusiastic - there was a tonality which (for those particualr readers) made the writing accessable despite there being fairly dense content. So my thought is that for ME sufferers who do have congitive problems that impact on language, cutural contexts and rhythms may have big effects upon what is accessible, readable or comprehendible.
     
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  20. chipmunk1

    chipmunk1 Senior Member

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    what chronic disease can be cured with exercise alone?

    RA?
    MS?
    Parkinsons?
    Crohn's disease?

    The author didn't say recovered but said she improved.

    I don't think there is anything wrong with that. A subset of not very ill people might feel better if they move a bit. The question is whether the improvements will last or there will be a crash and a relapse after a while.

    From what she writes she seems still quite ill.
     
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