Is anyone aware it's national F.m. da... - Fibromyalgia Acti...
Is anyone aware it's national F.m. day tommorrow?
OH YES !!!!!!
yes, not been that much publicity for it and is meant to increase awareness.
I don't know about yourselves but i'm sure it would be difficult for most of us to even attend if they had events all over ,but there must be a way of hightening awareness ,my husband owns an iptv network and we had the chairmen of the national F.M. society come to our office wanting to set up her own t.v. channel but unfortunatly nothing came on it.Maybe there's something we could do about it.
yes , but dont think its made public enough. x
its not life threatening so no one cares about making it public, except the people who suffer with these chronic conditions, god forbid they might end up with more benefit claims and they wouldnt like that! x
May 12th is the International Fibromyalgia Awareness Day. We do what we can & everyone can help raise awareness - see recent FibroAction blogs on this.
FWIW FibroAction is a national charity. Other organizations try to make it out that they are the national organization but that is not true.
F.m. cfs/m.e. and m.s. are life threatening illnessess as they all get you down and change your lfe forever ,they all affect how you think and how you are,unfortunatly those who don't have any of these don't understand how it is so aren't fussed who is aware of it,Unfortunatly because most of us look ok on the outside and don't have a big sign saying we're ill ,it seems it doesn't matter ,very annoying when someone bumps into you and it hurts like hell.So i'm thinking what else I can do when i'm sat on laptop at home because to ill to go out most of the time but i'm working on it 
I asked about this a week or so ago. Isn't it terrible that there is NOTHING happening to raise awareness.
Aids awareness day started back in the early nineties and i think everyone knows about that (thankfully - that is a truly awful illness).
I think that between us we should make sure that everyone knows about it.
I've just seen that there is actually a national charity for FMS. I didnt even know that. Will they be fundraising tomorrow? If so what will the money be used for.
I have a work history of working for a very large international charity in their PR Dept. While i am no longer able to work it doesnt mean i have forgotten everything - well hopefully not! lol.
Next year after xmas, and the januarly blues we should start thinking of ways of getting us 'noticed'.
Im up for it anyone else?
I think facebook is a great way for getting things like fibro noticed, nearly everyone has a facebook account, if we all join the fibro group on facebook it shows up on our wall and future announcements from the fibro group are posted on our walls too, people are nosey, as soon as they see the post people click on it to see what its all about, so theres one way to raise awareness, if we all did that it would educate alot of people all over the country and even some outside of the uk and its free!
whats your idea's Tiddlyf? If I can I'm up for it
Irene x
I don't have an account now. I only wanted friends and those I invited to be involved with anything I wanted to share - but as their friends can now see what I put and as something I said was used against me in a medical you should be careful! Shame, I was enjoying it and the contact it gave me.
Soft hugs and sweet dreams
Sorry about that Sarah-Jane. I would be lost without FB. You can change your settings so that only your friends see them.
Yes, I've changed my profile picture on Facebook today as have many other and shared links to raise awareness and will be sharing any others I see
Is this in the states? I'm in the UK and I've heard nothing about it! If it international why hasn't there been more publicity about it?
I will certainly be making all my contacts on FB and twitter know about it!!!
Good luck anyone doing anything tomorrow xxx
No, no idea. Too late to mention at work. Shame, maybe they would have taken me seriously! Joke. They mostly do but still don't understand.
I have F.M. group on my facebook and we have a local meeting ,unfortunatly it depends if im well enough to attend but if other charities can do it im sure we can
Now time to laugh at me/myself.
When i read lyndseyMid's comment i thought FWIWFibroAction was a different charity. After googling it i realised FWIF meant for what it's worth. oops fuzzy brain moment.
What i suppose i was trying to say is; is FibroAction the nationally recognised FMS charity in the UK and if so what are they doing about raising awareness Today.
Also that fundraising is one of the best ways of raising awareness and if we did fundraise as a way of raising awareness what would the money be used for?
We would love to get more people fundraising for us! So please do. I've written blogs about this this week.
Unfortunately, as a very small, volunteer-run charity, we are limited in what we can do - Fibro awareness desperately needs people to get fundraising and volunteering so that FibroAction can achieve more!
Atm, FibroAction is changing because we now have more financial resources than ever before.
We already produce information resources, work with other organisations to update their information (e.g. NHS Choices), give talks to support groups, do what we can to educate healthcare professionals, answer people's queries, run this community, and give small research grants etc, etc. In the future, we would like to do more to fund research and also run more educational events.
We're trying to build on our core team this year so that we have more man-hours to get things done. Volunteer job specs will be going up on the website shortly.
With regard to no-one knowing about it, getting national level media attention is difficult and very time-consuming. If anyone has experience with PR or media and wants to volunteer to help with this specific aspect, let me know!
As a charity, we have been putting information on the Awareness Day on our website, this community, the FibroAction Facebook page, the FibroAction Twitter feed and the FibroAction e-newsletter. So we have tried to tell you about it! If you want to stay up-to-date, why not sign up for the e-newsletter so you'll get emailed information directly in future?
Here is the FibroAction Facebook page - go like it if you're on Facebook!
my dad left me a link on my f.b. saturday,it was to portsmouth rheumatology at Q.A. hospital who are collecting tesco vouchers to get equipment for their deparment.also my hubby has media centre and we have a great p.r. girl who knows all about f.m. as i said before,i'm sure we could come up with something it's just finding a place to start and i guess that could be with local f.m. meeting groups ,we could set up local events for those able to ,film our events and put it all together on an f.m. tv channel which could go out on set top box ,all of these my hubby 's company does already.A bit like this group and fibro action but on t.v. .it could be your blogs that you film or your experiance or Q&A 's,just a few ideas but every bit helps
If anyone wants to send spare Tesco vounchers for schools & clubs to Portsmouth Rheumatology for their childrens hydrotherapy group and the Rheumatology Education and Childrens Hospitality (REACH) Project, the details are here:
Light up or Blog Bomb for International Fibro Awareness day May 12th
Tinnitus awareness week
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