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Primer for family, friends and care providers - WIKIE MEpedia

Discussion in 'Parents and Caregivers' started by Melanie, Nov 26, 2017.

  1. Melanie

    Melanie Established Member (Voting Rights)

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  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks. I feel like I've not used MEpedia much until recently, and there's loads of good articles on there now.

    I just started reading that, and wondered if it's a mistake to have the talk about what ME/CFS is not so early in the article, or to talk about the 'illness beliefs' model as being widely accepted in the UK?
     
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  3. Melanie

    Melanie Established Member (Voting Rights)

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    I don't know. Do you edit? Anyone and everyone can jump in.
     
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  4. Melanie

    Melanie Established Member (Voting Rights)

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    Oh, and if you do edit that page just remember that the Primers are basic and simple so people can get through them easily. If they want to know about Chronic Fatigue Syndrome or Post-exertional Malaise they can just select the links.

    Unfortunately, the Myalgic Encephalomyelitis page is a mess, very hard to understand. That is a page that could use an overhaul.
     
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  5. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I found it ok but a little too emotionally charged in places. There is quite a bit of editing I would do, but some of the issues (rephrasing CBT bit, changing the onset and diagnosis bit to include gradual onset rather than just focus on sudden infection route etc) would be so contentious that it probably would be a waste of time and be reedited backwards and forwards ad infinitum.

    I think it would be good as a basis for your own personalised note to send to friends and family though. I wouldn't want to link to the site in case it's reedited after I've sent the link.
     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    I never have. I could do though. Thanks, I'll bear it in mind.
     
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  7. Graham

    Graham Senior Member (Voting Rights)

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    It's a very heavy piece of work for an average person to read: the structure and style are aimed squarely at the well-educated and linguistically fluent. I honestly couldn't recommend it as a general primer.

    In my experience (as a teacher), I find that most intelligent people have very little understanding of how difficult the average person finds such stuff, let alone those who struggle more with reading: they tend to describe their abilities in subjects other than their speciality as "average" when they are way above that. The Sun newspaper (UK) is pitched at the average 16 year-old.

    Don't get me wrong: the content is very good, and thorough: I'm not knocking it, just redirecting!

    A small group of us did try to provide a more basic introduction to ME on our meetup site (meetup.org.uk) under the "New to ME" tab. But even then there will be many people who find that too long and too complex.
     
  8. dannybex

    dannybex Established Member (Voting Rights)

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    Does anyone know if they're planning to add a section on worldwide rates of ME/CFS? I see there's a section on diagnosis and treatments for other countries, but I couldn't find an overview on comparative rates of illness...
     
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  9. Joh

    Joh Established Member

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    Haven't linked to MEpedia to inform friends or family so far (and would need a German version) but find it extremely practical for myself. It's a quick way to find sources, links, citations, studies, info on people etc all in one place (e.g. I often use the PACE trial, exercise and PEM page). The main page is a little confusing and I can't see all topics there but use the search function. It's a work in progress and steadily improving.

    I'd say it's definitely worth a try, if you're interested. This is not like the Wikipedia page where every edit is reverted in minutes, but a project amongst ourselves. I don't edit much on MEpedia, as I'm not a native speaker (so just add links etc), but I believe that editing is very, very welcome. I've checked the "discussion" and "view history" pages out of curiosity and there's no fighting/reverting (in comparison to the Wikipedia page where I've wasted my youth during the last weeks [on the German version]).

    If you like you're welcome to just go ahead and add topics.
     
  10. dannybex

    dannybex Established Member (Voting Rights)

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    Thanks @Joh. If I knew the rates I would certainly be willing to add to the content. I've searched via Pubmed and Google scholar, and haven't found anything...yet.
     
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