Conference update #2 - No-one has heard of FibroAction!

I am therefore talking a lot, even by my standards!

I felt sure someone would have heard of us despite us being relatively small, but out of everyone I've talked to it's been news to them. This upsets me a little as our charity and forum are amazing! I've been singing our praises alot and getting them to look us up online.

Karen xx

6 Replies

  • Well done Karen ! As you say, the forum and community are amazing. You did well to publicise. Warmest thanks for all you are doing (and other members of the team).

    Best Wishes, Rock Rose x

  • Well Done our Karen - as well as the community you do lots as Admin Assistant and need a pat on the back , gentle pat that is :)

    You are right we have managed to build up a great community full of lovely members, great Admin (not blowing my own trumpet even if I had one!) and members who give great support of FibroAction in general! :)

    Thank You to ALL of you who help welcome newbies, help give out our website, point people in the direction of the FAQ & even the Reports of Abuse to help us moderate the community. We can't be everywhere!!

    But most importantly help provide a place where people can speak with the confidence using a non-judgemental & friendly environment where we all support each other. :)

    Keep up the good work - remember to pace too ! :)

    Emma :)

  • Hi Emma

    Jan Chambers from is launching a website that will detail global fibro charities. It may be worth while contacting her to add our details to the site when it goes live. I have her email address if needed :)

    Karen x

  • I must admit I found the site by a complete fluke when doing some symptom checking at a time I wasn't aware I actually had fibro (don't ask it is too long a story). I was puzzled by symptoms I had that did not seem to fit in exactly with my other health problems which had definately been diagnosed such as osteo arthritis and it came up with fibromyalgia. Through this I started to do further searches and stumbled across FibroAction.

    My new GP gave me a print out of some information on fibro from the Patients Uk site. At the next visit I said I had read the information and he asked me if I had considered joining a support group perhaps attached to Fibromyalgia UK. I said that unfortunately there wasn't one in this area but I was a member of the forum linked with FibroAction which members gave very useful information and support to each other. Hopefully, he will tell other patients who are newly diagnosed about the forum.

    So glad you had the opportunity of spreading the good word and thank you for keeping us up to date on the conference. Hope you are not in too much pain and that attending isn't tiring you out too

  • Well done, I am certain that you can get the message out there!

    All my hopes and dreams for you

    Ken x x

  • I know its disappointing initially, but they will now tell others. Thank you so much for doing this.

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