The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

New report on severe ME, "My life stopped ..."

Discussion in 'General ME/CFS News' started by Dolphin, Nov 15, 2014.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    On my first read, the report seems good. A lot of it is made up of quotes from people who filled in questionnaires.

    I'm a bit surprised there is no mention of CBT, GET and other rehabilitative strategies. I think there is a reasonable chance that some people would have become severe from their attempts to rehabilitate themselves so I wonder was a decision made not to include any such quotes.
     
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  3. Bob

    Bob

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  4. Bob

    Bob

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    I haven't read it all yet, but I think it's a very good report on first glance.

    There are many quotes and experiences that I relate to...

    One quote particularly grabbed my attention, as being particularly pertinent to living with moderate to severe ME:
     
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  5. Min

    Min Guest

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    I'm sure I was only one of many to tell them that graded exercise pushed my myalgic encephalomyelitis from moderate to permanently severe; what a shame they chose to ignore this. The charity never ever criticise the current 'treatments' available at the fatigue clinics; I guess this is because they were part of PACE and work closely with Prof White.

    Given the information severely affected patients have spent time and energy sending them, there really was no excuse for their symposium on severe ME to be so dire.
     
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  6. Simon

    Simon

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    Wow, I think this is a terrific report, brilliantly presented. Above all it moved me, greatly.

    I don't suppose AfME will mind me quoting extensively from the report:

    • 96% said they had stopped or reduced household tasks
    • 95% had stopped or reduced social contact
    • 74% require full or part-time care

    On applying for benefits:
    The report closes with this quote:
    Edit: the pdf of the file is now available for download from Action for ME here
     
    Last edited: Nov 17, 2014
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  7. justy

    justy Donate Advocate Demonstrate

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    This is a really good report on the experiences of those with severe M.E.

    I'm still not sure how severe M.E is assessed - reading through these comments I realise I fit the severe but not very severe category - think I have been in denial. My experience would not be out of place amongst the comments in the report - it's good to know someone is listening. Lets hope AFME start to step up to the plate now.
     
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  8. Valentijn

    Valentijn Senior Member

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    If it's impacting your ability to shower as often as is culturally expected of you, I think it's safe to call it severe :D
     
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  9. NK17

    NK17 Senior Member

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    Well said @Valentijn!
    If you can't shower as frequently as you would like to and when you do you've to sit, can't walk to your mail box, can't drive anymore you have a pretty severe case of ME.

    When you depend completely on the care of others and have to lay in bed in almost complete darkness, you have an extremely severe case of ME.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I have tried to open up this file to read it on both my phone and computer and copied the link to different browsers (Chrome and Safari, etc) but it will not download or open and I really want to read it!!! What am I doing wrong?

    I am definitely in the severe category as right now I can only shower once a week with a shower chair and use a wheelchair when we go out. I require help from my husband, parents and friends with just about everything that requires physical energy or the ability to breathe while standing.

    I can still open mail and pay bills and help my step-daughter with her homework but I cannot lift anything, cook, clean, walk my dog, or do any of the things I took for granted.
     
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  11. Dolphin

    Dolphin Senior Member

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    I'm attaching it now.
     

    Attached Files:

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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Dolphin Thank you for posting the link and that was really heartbreaking to read. It made me really sad. It also made me realize the number of British words that I do not know what they mean!
     
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  13. justy

    justy Donate Advocate Demonstrate

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    Well, give us a list and we'll do our best to tell you what they mean.

    I am still able to shower, although it is tiring I can still potter a little at home, but less so these days. I ownder if my ability to shower is because I don't have POTS? I've only had a bath tow or three times in the past 5 years - I wouldn't trust myself alone in the house to have one and they always make me feel dizzy and spaced out. It's a shame because I used to love baths.

    Last summer I drove a little alone - once a week to get my daughter from her dance class - but haven't driven a car at all since then. Yesterday someone I know asked me how I was, I said I was feeling a little better, but not great since the week before and she said that it was probably from going to Cardiff on Saturday. I told her I hadn't gone to Cardiff for the day, that my husband had for work. She replied that she thought I had gone to Look round the shops, or to the museum with the kids while my husband was working (he works from 9 - 4 and its a two hour drive each way).

    I told her that I couldn't do that alone (or at all at the moment) that I couldn't go out without my husband or other carer at all. She seemed surprised and said again that she thought we would go for the a nice day out, me and the children. I pointedly said 'no, I can't go out alone. I need someone to push my wheelchair, (she knows this!?) I am much too ill to go out and do things like that - I haven't been out alone for 6 years.' I couldn't have been more straightforward, but she still looked confused.
     
  14. Revel

    Revel Senior Member

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    Spooky, @justy. I'm originally from Cardiff and last week I was speaking to a family member about the city and how I'd love to go visit the museum and take in the sights as I miss doing such things. She suggested I take a day trip on Saturday. When I said that I wasn't physically able, she looked so surprised!

    I only leave home for hospital appointments and to occasionally visit my Mum, who lives on the outskirts of Cardiff. I haven't driven for 18 months. I live in the downstairs part of the house to avoid the stairs. I weigh under 90lb and can barely raise my arms to my head. Why are some people so wantonly blind to the reality of our situation?

    I look forward to bumping into you at the museum, @justy. Er, next weekend good with you :thumbsup: ?
     
  15. justy

    justy Donate Advocate Demonstrate

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