Help FibroAction to Raise Awareness! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help FibroAction to Raise Awareness!

Mdaisy profile image
11 Replies

Awareness Dates 2014

Monday 12th May is International Awareness Day

Saturday 6th - Sunday 14th September is National Fibromyalgia Awareness Week

Help us to raise awareness by finding us on Social Media, here's some helpful information to make it easier to spread the word!

Connect with us on Twitter - @FibroAction & RT (reTweet) our posts;

twitter.com/fibroaction

When using Twitter to talk about anything Fibro related, use the hashtags #fibro and/or #supportfibroaction

For Awareness dates use the following - #fibroawarenessday (for International Fibro Awareness Day on May 12th) and #ukfibroawarenessweek (for the UK Fibro Awareness Week in September).

Use the International Fibro Awareness Day of May 12th and the UK Fibro Awareness Week in September as opportunities to use your Twitter account and Facebook status to raise awareness, by posting something like:

...for Twitter:

May 12 is #fibroawarenessday. I have #fibro & so do around 2 million people in the UK. #supportfibroaction - fibroaction.org

I support #ukfibroawarenessweek. 2 million live with #fibro, despite this awareness in UK is low. #supportfibroaction - fibroaction.org

OR general Tweets could be ;

I #supportfibroaction as they produce evidence based info about #fibro. Check out fibroaction.org or the community forum via healthunlocked

Do you have #fibro? If so, please #supportfibroaction as they raise awareness and produce evidence based info for people with #fibro in the UK

Need to know about #fibro, check out the FibroAction website to find evidence based factsheets 'All about #fibro' #supportfibroaction

Find us on Facebook;

facebook.com/fibroaction

...for Facebook:

May 12 is International Fibro Awareness Day. I have Fibro & so do around 2 million people in the UK. Check out fibroaction.org for more info and connect with them on Twitter - @fibroaction

I support the National Fibro awareness week (Saturday 6th - Sunday 14th September) as around 2 million live with Fibro in the UK. Despite this awareness of Fibromyalgia in the UK remains very low. Please support FibroAction, check out their website fibroaction.org

OR general posts could be;

I support FibroAction as they produce evidence based info about Fibro. Check out fibroaction.org or join their community forum via HealthUnlocked, link below;

healthunlocked.com/fibroaction

Do you have Fibro? If so, please support FibroAction as they raise awareness and produce evidence based info for people living with Fibro within the UK. 'LIKE' their Facebook page, find it here; facebook.com/fibroaction

Are you living with Fibromyalgia ? Do you need to know about it? If so, check out FibroAction website to find evidence based factsheets 'All about Fibro' here at fibroaction.org

Let's work together to raise awareness and better understanding of this condition as we all know it is lacking causing problems with diagnosis & treatment.

Many Thanks for reading

Emma :)

FibroAction Administrator

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Mdaisy profile image
Mdaisy
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11 Replies
TheAuthor profile image
TheAuthor

Thank you so much for posting this here for us. It is very much appreciated.

Take care

Ken x

Fibrofoggiest profile image
Fibrofoggiest

Thank you Emma, I had been wondering how to promote it via FB and your suggestions are of course excellent. I shall of course be doing it on the 12th and NOT the 14th as you know ...........oh my word, I think I should be put in a dark room with the key thrown away :d :o :d lalalalalalalalala

Foggy x

Mdaisy profile image
Mdaisy in reply to Fibrofoggiest

Hello Foggy,

We have another campaign to raise awareness coming up which you may be interested in for Facebook.

Coming Soon...............

Emma :)

Fibrofoggiest profile image
Fibrofoggiest in reply to Mdaisy

Oooowww that's good, let me know when it's happening and I'll do all I can to help ! How are you feeling today? I hope the improved weather is beginning to make a difference for you, I certainly enjoyed it Sunday and Monday morning, then it clouded over :-(

Foggy x

Mdaisy profile image
Mdaisy in reply to Fibrofoggiest

Hello Foggy,

I felt better on Friday and Saturday but not so much today :(

I'm looking forward to a floatation tank treatment tomorrow with Epsom salts, purely to do my duty for all people with Fibro you understand ! No but seriously I'll let you all know how I get on. You never know might be one for the information team to research further!

With no FibroAction hat I read 30% reduction in pain and 2.5 days less pain per week on average! Of course doesn't say how often the treatments, at what cost and if this is one study you need more to studies before claims like this are made. Wonder if the information team may feature about them in the future ?! Might be interesting.

Speak tomorrow

Emma :)

FibroAction Administrator

Just like to mention this is a private treatment I'm trying and has nothing whatsoever to do with my FibroAction role! #rules !

in reply to Mdaisy

I`ll look forward to this Iv`e been trying to come up with something that I can put on facebook as most of my friends and even family still don`t know that I have fibro. Somehow I never got around to it at first and now i`m stumped as to the best way. :O sue

Ginsing profile image
Ginsing

Morning

The floatation tank sounds simply fantastic do tell us all about when you come. I think I would like to try one of those.

I hope you enjoy it - whishing you a wonderful day

xgins

Well I am zero FB and twitter so I am raising awareness through my GP surgery with the awareness pack though that will be before May 12th, have they been sent out yet Emma?

........... and with something to the effect of the examples you've given us but on my e-mails and skype messages

:) :) :)

fenbadger profile image
fenbadger

Have just re read this and it's a good time to think about it again. I'll be facebooking it in the next couple of days :P

security profile image
security

I like this Facebook links, Good to share with everyone.... :)

B2WC profile image
B2WC

I used to be an Executive Representative for a big Pharmaceutical company who used to visiting hhFM got ealth care professionals such as: consultants, gps/nurses and earning a circa of 60 -80.000 per year, then diagnoses by FM, then recently due to family issue I resigned and got another job as a sales advisor, but my FM got worsen, one I was getting horrible headache , I askesd my fainted, luckily myson to drive me, but in a split second I felt like this ton of brick hitting my head, I was fainted, I was taken to the hospital, since then I have got 4 seizure, the specialists unable to diagnosed what was it, a part of chronic pain that had been hanging around due to my FM that I suffred from 16 years ago, they sent me for assesment with ATOS, now the right part of my body does not function properly, I can't drive, I can function my day to day properly, I am a burden to my family/sgociety...I walk wit a crutcth.., and lifyet.., there is no help?..., i have never claim benefit in my entire life, I pai d 50% tax bracket..but then the government only give me £71 ,20 per week?... how can I survive...? surely they should be a little bit fair on that.., the ATOS said that I should have some one to come to asses how I live.. how can we raise this awareness, can we not write to health minister that FM should be classified the same as MS?, can we not get help such as ''PIP'' or something, does any one know anything about it, where can I get help, where do I go from here, as in where I live, its seems no one know, even my health care professionals (who used to be my customers) have no clue on our local community, so I would like to start my FM community in my ar ea when I get better, as my grou nd is science, and I have got diploma in treating FM (massage therapist)

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