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Following on from the topic of research

Posted , 5 users are following.

bronwyn97278
bronwyn97278

This is just a diversion from the last topic re "all the Research", which I thought maybe getting off topic a bit....so thought....Does anyone know someone somewhere/how can we contribute all of "our" experiences....signs, symptoms, treatments into one "blog"...so that anybody coming onto this site...and Yes, even the ill-informed medical professional....can read and learn from us....it may save soooo much heart-breaking time, and even medical expenses in the testing/ruling out of other similar conditions.....what's the general concensus??    Bron

1 like, 13 replies

13 Replies

  • Meg53
    Meg53 bronwyn97278

    Posted

    What a great idea Bron! Wish I knew of such a blog, would gladly contribute to it. Hope you are having a good day today.

    Meg🌺

    • bronwyn97278
      bronwyn97278 Meg53

      Posted

      Hi to all who replied re my suggestion....I received a private message re this from the Moderator.....he is going to put one together on the topic of Fibro (and maybe also insert other conditions that come into this catorgry)....I was told there already exists one for the PMR/GCA sufferers......Bron
  • christine26761
    christine26761 bronwyn97278

    Posted

    Really great idea Bronwyn...seeing as you thought of it....might be worth you tring it..it would be a great help....it needs to be here permanently..so people can easily get to it...go you, well done ..be blessed..:-) xxxlol
  • Bee70
    Bee70 bronwyn97278

    Posted

    Hi Bronwyn

    I was thinking of the same idea.  People and Professionals need to have an insight to personal experiences of actual lifestyles of people suffering without making assumptions. It needs to be into the public eye and shared with all communities. Will totally back up this idea but I have NO knowledege of setting it up.

    Great Idea !! wink x

  • Emis_Moderator
    Emis_Moderator bronwyn97278

    Posted

    Hi Bron,

    If you look at the PMR group here

    https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

    there are 2 pinned discussions at the top of the list. One is Contributors Brief Histories and the other is a list of useful links. I can do the same for the Fibro group if you think it would be useful. The only issue with the histories thread is it did go off topic a bit but it has been going for a long time now. The useful links thread would only include reputable links but could also include links to other specific discussions within the group if felt useful. There is a similar pinned discussion in the LS group

    https://patient.info/forums/discuss/new-to-ls-start-here-297241

    Let me know what you think and I will post back here once set up.

    Regards,

    Alan 

    • bronwyn97278
      bronwyn97278 Emis_Moderator

      Posted

      Yes please;  to have a site for Fibro and CF/ME would be Very beneficial....also any useful comments of Osteo/Rheumatoid Arthrites, too, as I have read so many blogs re all of these conditions, and they all seem to overlap.   I am not very good at starting web-sites, and you read/know all there is....thankyou.....Bron
    • Emis_Moderator
      Emis_Moderator christine26761

      Posted

      Hi all,

      I have added a pinned discussion here

      https://patient.info/forums/discuss/fibromyalgia-introduction-and-resources-437341

      What I am doing is not a new/separate website but an area within these forums where users can "centralise" expereinces as per the original post here. I cannot put Fibro/CFS/ME/Arthritis in the same group but what I will do is add pinned discussions to those groups as well then add links between the various pinned discussions so users can find the other groups quickly. This may take me a while but I will post back here when complete. You can freely post the link above in other discussions to guide users to it and it will not go for moderation.

      Regards,

      Alan

       

    • christine26761
      christine26761 Emis_Moderator

      Posted

      Your such. a blessing to us on here Alan...thank you for all your time and effort..I really appreciate you..be blessed..have a lovely day..
  • TeresaJS
    TeresaJS bronwyn97278

    Posted

    Oh, Bron, if I could paste here all the texts and videos I've gone through in several languages during the last 2 years we could make The Ultimate Fibromyalgia Encyclopedia !   lol

     

    • bronwyn97278
      bronwyn97278 TeresaJS

      Posted

      Hi TeresaJS;  me too.....I think we just can't help ourselves in trying to find ALL new and old info on this condition....today I went onto the Mayo Clinic site, as they have a very good reputation for new research/education/techniques etc....I was mainly looking for info on "diets", as so many on this forum are trialing diet//s......they don't feel that any "one" substance (even sugar) has any affect on Fibro....each individual is different, and they feel that "it is a possibility that many Fibro sufferers have an underlying condition that is exacerbated by some foods"....hence the reasoning of how some substances aggravate the Fibro in some people and not others?   This makes sense to me, as I don't think sugar has any adverse affect on myself....no difference either way.....I found  their research/info interesting.........until next timerolleyes with a huge smile....Bron
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