Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Why so little ME/CFS research from France and Germany?

Discussion in 'Advocacy Projects' started by Hip, Jan 30, 2016.

  1. Theodore

    Theodore Senior Member

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    Hi Hip! I can do this. I'll start as soon as you give me access.
     
  2. Hip

    Hip Senior Member

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    Great! You might want to start a conversation with me (click on my username "Hip" and select "Start a conversation") in order to send me your Google account email address. I will need this to give you editing access. If you want to protect your privacy, you can consider setting up another Google account that does not use your actual name.


    If we had volunteers to translate a German and say Spanish version of the roadmap, that would be great too.
     
  3. Theodore

    Theodore Senior Member

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    I pm you then!
     
    Hip likes this.
  4. Hip

    Hip Senior Member

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    Helen, Battery Muncher, Effi and 2 others like this.
  5. Hip

    Hip Senior Member

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    @DanME
    If you or any other of the German speaking ME/CFS patients on this forum would like to help translate a German ME/CFS roadmap, I can easily setup a German version of the roadmap.

    As with the French version, I will use Google translate to create a rough translation of the roadmap into German, and then I can give you editing access to the German roadmap website, so that you can in you own time fix the translation errors.

    My roadmap website is hosted on Google Sites, and editing Google Sites webpages is quite easy: it works just like a normal word processor (once you have editing access, you just press a button at the top of the webpage, and you can then edit the page there and then).


    I think offering a list of non-psychological drug and supplement treatments for ME/CFS can help serve a useful political purpose: it helps fight the erroneous view that ME/CFS is caused by psychological factors.
     
    Last edited: Feb 22, 2016
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Old thread, but reading through the comments I was wondering if French-speaking or German-speaking members might be interested in having their own sub-forum in their own native language?
     
  7. Theodore

    Theodore Senior Member

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    Personally I am not but I know a lot of patients would be interested since the platform used for the forum is really great.
     
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  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  9. *GG*

    *GG* Moderator

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    Speaking French is a different animal for me, compared to writing it. Lots more work for my Brain to write French, even when Not sick. Although with the translators online, that makes it easier, but still more work!

    GG
     
  10. frederic83

    frederic83 Senior Member

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    I hate Facebook, I can't read or write the comments properly, it takes time to load. Finding an old post is not enjoyable, the search engine is bad. Moreover, some people can't read English but would like to participate in the forum.
    It requires moderation work, though.
     
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  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  12. Mike Harley

    Mike Harley

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    Hi

    I'm interviewing Francoise Becavin from French ME Association/Group ASFC this week and will post her thoughts here as part of my work to raise awareness around the EU.

    Mike
    www.mikeseumarathons.eu
     
  13. Hip

    Hip Senior Member

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    Great, look forward to hearing what she says.
     
  14. BurnA

    BurnA Senior Member

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    Mike,
    You are a fantastic ambassador and advocate - really appreciate all your running and more!
    Have you considered starting a thread where you can update everyone on your progess and schedule etc. I for one would be very interested. Also, I imagine there are people here from most countries you plan to go to, so it could be a good way to generate support.

    All the best.
     
  15. Mike Harley

    Mike Harley

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    Ah thanks :)

    Yep happy to do that if you think people would like to read it.
     
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  16. BurnA

    BurnA Senior Member

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    Absolutely Mike.
    I would say there are plenty of people here who might not be familiar with what you are doing so I'm sure people would like to know all about it and if they can help spread the word even better.
     
  17. Hip

    Hip Senior Member

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    There is an article about Mike's fundraising efforts on MEpedia. An extract:
    There are also photos and updates of Mike's marathons here: michael harley is fundraising for IiME

    Great stuff Mike, really appreciate what you are doing.
     
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  18. Mike Harley

    Mike Harley

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    AndyPR and BurnA like this.
  19. daisybell

    daisybell Senior Member

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    BurnA and AndyPR like this.
  20. Mike Harley

    Mike Harley

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    Hi all

    Here's my interview with Marie from ASFC (Association fran├žaise du Syndrome de Fatigue Chronique) about what it's like for ME patients in France.

    http://www.mikeseumarathons.eu/france.html

    I'll be running Toulouse Marathon there on Sunday (no 9 of 28) and hoping to meet someone from ASFC.

    Also just been interviewed by a local Toulouse paper (will publish when live), hopefully can make a small awareness ripple for people with ME there.

    The two French ME facebook support groups I'm aware of have posted some nice messages and donated to Invest In ME this week for their biomedical projects.

    Feel free to share/circulate

    Mike
     
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