A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Not a recommendation: A teenager's determination overcame a debilitating condition that took her out

Discussion in 'Other Health News and Research' started by AndyPR, Oct 19, 2016.

  1. AndyPR

    AndyPR Senior Member

    The ME Association Facebook page shared this article with no qualifying comment at all.

    http://www.walesonline.co.uk/news/h...ng-condition-12033537#rlabs=1 rt$category p$7

    I think fairly understandably it has attracted mainly negative comments.
     
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  2. JaimeS

    JaimeS Senior Member

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    Yes, I saw this. Pretty awful.
     
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  3. Hutan

    Hutan Senior Member

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    Interesting that there is a link to another story embedded in that one about Sophie. This older story is about Sarah who looks to be suffering badly. Fortunately, Action for ME are on the job.


    On Sophie, the bright girl who just pushed through and got better:

    Three of us in my family got ME at the same time, including my daughter. She continued to try to go to school and maintain some extracurricular activities. She improved and now is essentially well.

    If my daughter had been surrounded by doctors encouraging her to 'push through' and praising her for doing so and if she had not seen my son and I, also initially trying to maintain our previous level of activity and not getting better, she may well have attributed her recovery to that 'pushing through'.

    (As it was, our well-meaning GP said to her, in front of me, that she was so proud of her for recovering, as if it was somehow a choice my daughter had made and a choice that I and my son were refusing.)

    Anyway. We must be careful not to blame Sophie and others like her for concluding that her actions resulted in her recovery (or to suggest that she must not have had ME/CFS). Her attribution of her effort to her recovery is an understandable response to her limited experience and the advice coming from her doctors.
     
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  4. JaimeS

    JaimeS Senior Member

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  5. PhoenixDown

    PhoenixDown Senior Member

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    I doubt she had real ME, it's this kind of dilution of inclusion that confuses people in to thinking we all can simply push through the illness and get better, just think about how many patient's lives have been ruined by this ideology.

    PS: I'm not saying she wasn't ill, I'm saying you're comparing apples to oranges.
     
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  6. Hutan

    Hutan Senior Member

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    Well, I tried to show in my last post that there can be a spectrum of impact. Without doubt all three of us in my family had the same thing but at different levels of severity. Our illnesses started at the same time and we moved through the same stages of certain symptoms being predominant (gastro, joint pain, pins and needles etc).

    Perhaps we all didn't have, and don't have, ME - but we fit the Canadian criteria very well. And, if ME is an autoimmune disease, variability in the severity and the range of symptoms can be expected. Look at lupus for example.
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    I note how this article appears to have been twisted or spun to push a certain view

    It firstly says what the doctors advised (which most of us dont agree with) but instead of putting it next that she has cut back on her activites to help her possibly get back to school, they avoid saying that there and instead put that she returned to full time schooling right after that doctors advice. And put the cutting back activities part in an entirely different paragraph like as if not wanting to have that seem in the same paragraph as the conflcting drs advice.

    If I was doing this article I'd spin it the opposite way eg "Doctors advised Sophie to push herself and return to school for half days. Sophie thou had to cut back on her activities, managing to return to school by the start of year 10.

    It just shows how stories can be spun both ways. To me it does sound like she had ME/CFS but the thing just looked bad to most of us due to how it was spun.
     
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  8. taniaaust1

    taniaaust1 Senior Member

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    @PhoenixDown did you click the link and read the whole article, this girl must of been very sick and not someone with just typical "chronic fatigue".

    She spent 14 months in hospital!!!. Obviously in hospital she isnt exercising all that much or she wouldnt even be there (much of time being in hospital means just laying in bed.. this possibly helped stop her from crashing more and may of given her a chance of starting to recover). So she was laying in a bed resting for over a year .... and then after that she started to get back to normal activities.

    If reading her comments.. from her own quote (instead of what the editor implies) she says "after overcoming my condition I was really motivated to work harder."

    So in other words she'd already got a lot better or even considered herself healed in some way before she was motivated to push herself harder with things. (sounds like she improved as she was already recovering, she didnt push herself hard till getting better or having got rid of the worst of the symptoms).

    Its interesting she says "my condition" and not ME/CFS (maybe she just doesnt like the CFS term), but it leads one to wonder what condtion is she exactly refering too and what she was in hospital all that time for. She may of had severe depression and spent over a year in hospital re that before getting out? (and hence then majorly improved some on treatment of that). The thing is she still would sound like a ME/CFS person seeing she's had to still cut back on her activities.

    she may of been one with more minor ME/CFS with comorbid depression or someone who did have severe ME to start with but with hospital bed rest long term started to recover. We often hear that children seem to have far more chance of recovery then adults. So that doesnt mean that she didnt have ME (even I had a remission for a few years).
     
    Last edited: Oct 20, 2016
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  9. taniaaust1

    taniaaust1 Senior Member

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    whoops. posted under wrong thread. removed my post to right spot
     
    Last edited: Oct 21, 2016
  10. JaimeS

    JaimeS Senior Member

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    Also keep in mind that studies show children are more likely to actually recover. Even adults recover 5% of the time, and though this is dismal, it still represents 1 of 20 cases. We can't 'No True Scotsman' those and just presume they never had ME.

    From what I've heard from individual patients here and elsewhere, she should also be wary of relapse at the second common 'spike' in ME cases (late 20s to early 30s). We've begun wondering if relapse at this point is common.

    No studies, of course: just apocryphal.
     
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  11. Old Bones

    Old Bones Senior Member

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    I'm with @JaimeS on this one. I was one of the children (pre-teen/early teen, actually) who was ill with what I now believe to be ME, and who recovered. Of course, in the 1960's, nobody was talking about ME, so we'll never know for sure. I'm basing my supposition on symptoms only.

    I also share @JaimeS 's concern that Sophie should be aware of relapse -- again, my experience. Had I made the connection to my earlier ill health, perhaps I wouldn't have pushed through my symptoms so hard in my early/mid-30's.
     
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