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A better example for patient advocacy re fatigue from a German patient organisation -- for Multiple Sclerosis

Discussion in 'Health News and Research unrelated to ME/CFS' started by MSEsperanza, Feb 3, 2018.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Lacking the resources to write more -- just would like to let you know how the German Patient Organisation for MS "AMSEL" handles the issue of false (psycho-) perceptions of illness related fatigue.

    Apologies for the Google translation (always funny though) - hope the key message is not lost:



    URL:
    http://www.amsel.de/multiple-sklerose-news/medizin/Irrtum-Multiple-Sklerose-sei-Willenssache_7152

    "Amsel" also means Blackbird by the way :)
     
    Inara, petrichor, Esther12 and 4 others like this.
  2. Joh

    Joh Senior Member (Voting Rights)

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    Interesting, thanks for sharing.

    I like Jen Brea's effort to get in contact with other illness communities to fight together and to look at the similarities. When I looked at a cancer society site, in the main menu was also a prominently placed notice, that positive thinking is not curative. I've already started to make a list of bloggers and websites with similar illnesses and plan to contact them e.g. about Unrest. Of course it's important to keep a profile (especially as a disease without biomarker) and to also emphasize the differences, but I think it would help to get the word out about ME to other illness communities and cooperate in some areas.

    This MS Amsel site has 11.000 Facebook followers, a huge difference to the ME Facebook pages. Prof. Scheibenbogen recently said in an interview that ME is four times (?) more prevalent (or a similar number, but more prevalent) than MS. The German Facebook page about ME with the most followers has 1000. It shows how much we still need to do to get the word out, get people diagnosed etc.
     
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  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thanks @Joh , you completely got my point.*

    Hoping I will be able to add some thoughts soon.

    *Edited: (even though I didn't elobarate.)
     
    Last edited: Feb 3, 2018
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  4. Inara

    Inara Senior Member (Voting Rights)

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    @MSEsperanza, what is the take-away? Sorry I don't get it.
     

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