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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We need your GET story to publicise #stopGET petitions

Discussion in 'Action Alerts and Advocacy' started by Jenny TipsforME, Sep 28, 2016.

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    You should have heard about the #stopGET petitions to suspend/stop graded exercise therapy trials in the UK by now. If not, SIGN NOW AND SHARE, SHARE, SHARE!
    The best logical argument for suspending research like MAGENTA (child GET) is the PACE debacle. Personal stories are also a really useful tool for making a heartfelt connection with the general public.

    The stopGET team could do with personal GET stories for press releases, articles, blog posts. If you or someone you know has a bad GET story to tell:
    • Email GETpetition@gmail.com your story in one or two paragraphs (and add here if you want to)
    • It would be particularly interesting to hear from people who did GET as a child and parents of children (but all ages appreciated).
    • Concrete examples of how your health and limitations changed are helpful.
    • How did you feel after GET?
    • Did it stop you doing certain activities?
    • How long did the impact last?
    • Imagining that the person reading knows nothing about ME could help you explain.
    • Do you have pictures you are comfortable sharing? Visible before and after GET changes would be particularly poignant.
    • Your story will be shared widely. Do you want to use a pseudonym or do you want to use your real name (plus contact details)? Please make this very clear.
    • Please also ask people you know who have a powerful story to contribute.
    If we don't reply immediately it will be post MillionsMissing PEM related (I ache loudly all over today through painkillers). It would be brilliant to have some stories ready to use as soon as the PEM clears though.

    If someone (eg @JaimeS @Keela Too @katharine_c @Sasha @AndyPR @Tom Kindlon or anyone else who wants to take this on) could share this on relevant facebook groups that would be much appreciated. Please comment if you've done this so we don't waste spoons.
     
    Last edited: Sep 28, 2016
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  2. AndyPR

    AndyPR Senior Member

    Will this be a feature of the StopGET website at some point Jenny? If it was then it would make it a lot easier to share around, something along the lines of "Did GET affect your health? Tell us your story and help stop GET, see website for more info". Totally appreciate that the vast majority of #MEAction people will need to rest up for a while though after yesterday.
     
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  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Yes in terms of sharing these stories, though not decided if each story will be a separate blog style entry (and so a new thing to share each time!) or if it will be a page with lots of stories.

    I'm not sure in terms of using the website as the method for collecting stories. I'm wondering about creating a form people fill in, but that may be an unnecessary use of spoons if people are able and happy to share here or in email.
     
  4. AndyPR

    AndyPR Senior Member

    I guess I was probably more thinking of having the information that you've put in the original post here on the website with whichever way of contact seems to be the best (email address, form or something different) so as a way to collect the stories. But it's just a suggestion/random thought of mine, if it's not possible then that's not a problem, spoons have to be saved wherever possible. :)
     
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  5. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @AndyPR I'm sort of working on the assumption that there will be plenty of Phoenix Rising folk who have relevant stories and who know the background to what we're communicating. I'm also going to share the link to this thread.
     
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  6. AndyPR

    AndyPR Senior Member

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  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    It was great this evening to receive a story by email just as I was about to email a newspaper - I was able to add the GET story straight in.

    Please keep sending them in!
     
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  8. AndyPR

    AndyPR Senior Member

    Shared on an Invest in ME Facebook thread about GET.
     
    Last edited: Sep 29, 2016
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  9. AndyPR

    AndyPR Senior Member

    And also on the main Invest in ME Facebook group timeline, the ME Chatroom page, it has also been shared onto Got M.E., now what page.
     
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  10. AndyPR

    AndyPR Senior Member

    Bump.
     
  11. ClarkEllis

    ClarkEllis

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    This is my story of GET which I added to MEAction's site a little while back.
    http://stories.meaction.net/2015/11/10/graded-exercise-therapy-ruined-me/

    GRADED EXERCISE THERAPY RUINED ME
    The first time I knew for sure that something was wrong was after a swim. I was a regular swimmer, I was fit and in the prime of my life. I'd had a persistent sore throat for months but doctors couldn't figure it out, so I just got on with it. A good swim always left me tired, but in a good way. This time, by the time I got to the changing rooms I knew something was very wrong. It was a body-broken tired.

    The one other person in the changing room confirmed it wasn't just me, asking if I was alright. I didn't know, but I said I was okay, and half an hour later I had managed to get home. As soon as I got in I collapsed across the dining room chair, my torso on the seat, head lulling over the edge. I couldn't move. I could barely breathe. My speech was slurred. My wife - we were only recently married - was going crazy with worry and I had to talk her out of calling an ambulance.

    For the next year all I did was struggle to work, come home and go straight to bed from 18:00. I rested every weekend and used all my holiday leave for rest too. I had been exceptional at my job, won awards for my work, but my performance dropped significantly to the point where I was barely keeping pace with minimum expectations. I went to the GP a dozen plus times over this period, had loads of standard blood tests that all came back normal. Eventually my GP said she thought I had ME and referred me to an NHS specialist.

    The specialist diagnosed me straight away, said it was definitely ME. She was a GP with a special interest in ME and she was decent. She was surprised I had managed to keep working and signed me off work for two weeks. Two weeks became a month. Then three months. Six months. A year. That was six years ago.

    In my first few weeks I was given CBT. It was a bizarre waste of time. Then I was given graded exercise therapy (GET) - again, under the NHS clinic’s trained specialists. I raised concerns because walking from the car to the clinic had been very hard in itself, but was assured that it was safe. Ultimately, I wanted to believe them because I wanted to be able to get well so simply and I missed exercise so bad anyway. So I did exactly as instructed, starting with just 5 minutes on an exercise bike on the lowest resistance setting. At the end of those five minutes I felt okay, I could have continued. But I stopped as instructed. The next day things were very bad. I couldn't believe that that small amount of exercise had done this to me. But it did and I never recovered from it.

    I stopped the graded exercise at that point, it was physically impossible to continue anyway. I feel very angry about this having since read the papers myself, such as PACE and seen that the claims made are not backed up by evidence, and evidence of harms are buried. My NHS clinic subsequently discharged me following the failed GET, saying there was nothing more they could do for me.

    I very much got the impression that I was a fact they wanted to bury. They wanted me off their books, off their list of responsibilities, so they could continue giving GET to others without having to acknowledge the harm they had caused me.

    I have spent most of my time housebound since. I have lost my masculinity and found that society does not value physically weak men. I have a four year old daughter who I play with for five minutes in the evening if I can manage it, which I often can't. My wife is my carer. I lost my career and the family income. My health trend is one of continual decline. I have to avoid activity, yet I am bombarded by symptoms and distractions are my only relief. I distract, like writing this, and then pay a disproportionate price.
     
  12. Art Vandelay

    Art Vandelay Senior Member

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  13. AndyPR

    AndyPR Senior Member

  14. AndyPR

    AndyPR Senior Member

    Stories needed, tell us your GET horror story. Full details in original post.
     
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  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    We've received a few personal stories about GET from different angles, which will be useful for publicity.

    Does anyone have firsthand experience of doing GET when you were a child?

    Or more tenuously missing appropriate, existing treatment because your doctor has been led to believe that GET is the appropriate treatment (most of us probably have an experience of this but I'm thinking of the doctor explicitly stating it).
     
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  16. 2kidswithME

    2kidswithME

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    My son was told to exercise by his consultant (paediatrician) when he was first ill, she assured us one of her other patients had done so and he was back to playing football. We weren't given any advice or support for this, just told he should exercise. In retrospect this was a good thing, as my mother instincts kicked in and I didn't push him to constantly increase. He was more poorly than I realised at the time, and just adding a layer of clothing (it was winter and he was hypersensitive to cold for the first few years) was more than enough 'exercise', even before he walked up the street a bit (not far). After a couple months of trying this it was clear he wasn't improving, so we quietly let it slide into oblivion. at that point I began researching and realised GET was hugely controversial, and that guidelines were that he should have had support for it, which we didn't -- which was a hidden mercy as he wasn't pushed.

    So this isn't a horror story, just that it was a waste of precious energy for him, and for me who had to make him do it when he was quite unwilling and so poorly.
     
  17. 2kidswithME

    2kidswithME

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    I would like to add another thought, that very few children exercise for the sake of it, mostly they are out and about being kids, or playing with friends, etc. To put them on an exercise programme just seems unnecessary and unnatural. Better for a parent to push them to the playground in the wheelchair (or drive them there) and let them enjoy playing and going on the slide or whatever, then push them home again. With what energy they have they need to be free to be kids. My kids learned their limits pretty quickly, didn't need them imposed externally.

    This is my basic problem with a format GET programme for children; for adults it's equally true, as they need to use precious resources for daily living before they begin to exercise.

    End of rant!
     
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  18. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Thanks @2kidswithME
    There are various angles to the problems with GET. One of them is how the advice is passed on.
     
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  19. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I'm just organising the case studies to start writing articles which will hopefully reach further than the ME bubble.

    Given the events of this week, it would also be handy to have short case studies/quotes about CBT. The focus will still be stopGET but we'll look out for opportunities to also mention problems with CBT.

    Do you have a CBT and/or GET story to tell? I'd be particularly interested in specific content eg what you were asked to do. CBT seems to be different for ME so we want to convey that effectively. People reading may have successfully received CBT for something like anxiety and wonder why we are objecting.

    Add your story here or email GETpetition@gmail.com

    please be clear about what name you'd like used (pick your pseudonym or state clearly that we should use your real name).
     
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  20. AndyPR

    AndyPR Senior Member

    Worth trying to get in touch with @Rose49 to see if she might add a few words, or could you use these?



     
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