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Archive for the ‘fibromyalgia’ Category

I’ve made a range of Twibbons from the awareness badges.

You can add a ribbon to your profile picture for things like blogging, Facebook and Twitter using Twibbon. The ribbons are free and allow you to create a unique badge for yourself.

You can find a selection of designs at http://twibbon.com/rachelcreative

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By special request I’ve added a new awareness badge en francais:

EM/SFC
&
Fibromyalgie
le 12 mai
Journée Internationale de sensibilisation

<a href="https://meaware.wordpress.com"><img title="me_and_cfs francais" src="https://meaware.files.wordpress.com/2009/03/me_and_cfs-francais.jpg" alt="" width="329" height="329" />
</a>

https://meaware.wordpress.com/badges/#enfrancais

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What Next?

When we first rallied together as individuals to blog for ME/CFS Awareness in 2008 it was out of frustration at not being able to do very much for ME Awareness Day/Month and not being able to find an official web site with badges and banners.

A lot has changed since and social media has mobilised a lot of people to do their bit.

There is now an excellent resource on Facebook for May 12th – International ME/CFS & FM Awareness Day with a lot of support and I’d like to direct you there for inspiration and support on how to raise awareness.

I think we have fulfilled our purpose and in many ways help to ingite a spark that others have carried through into bigger things.  Our Blogging for ME/CFS Awareness and badges captured the imagination of people who went on to set up Blue Ribbon Campaign, then WAMCARE (who ran until 2010) and the well suported Facebook May 12th group. People who had a vision to do it bigger, to do it better.

My own personal feelings about What Next with awareness campaigning is that fragmenting efforts doesn’t aid the cause.  That it’s better to add your support to existing campaigns and infastructure especially when your individual contribution is hindered by your illness.

Also that while our blogging has certainly helped to generate the seeds of bigger campaigns and has engaged individuals in using their voice, that often the word is only reaching those who are already aware of ME/CFS and FM. To be effective in raising awareness the message needs to reach people whose lives have never been touched by the illness.

So, I feel it is better to use my energy to back the work of organisations out there working to raise awareness of ME/CFS every day and to advocate for PWME’s.  I’ll still mark May 12th and use it as an excuse to try and raise the awareness of people I know who perhaps have very little understanding about my illness – in fact that’s something I try to do all year round anyway.

But I don’t think continuing with Blogging for ME/CFS Awareness is something I want to do or something that is using our energies effectively.  So I direct you to the Facebook resource for May 12th (you can see that without being having a Facebook account) or encourage you to support a ME group of your choosing in the work that they do.

I see closing this blog as a big positive.  We helped spark a momentum that others have run with and now there’s active awareness groups with a bigger remit and larger support.  The spirit of May 12th (as started by RESCIND and continued with BRAME) was for one day to put aside our differences (cause, treatment, name of condition) and come together to raise awareness.  In the interests of not fragmenting that support I think it’s time to end Blogging for ME/CFS Awareness and join our voices with larger organisations to be heard.

Thank you for your support.

The badges are still available for anyone to use. Please contact me first if you wish to use them for fundraising or commercial purposes rachelcreative@yahoo.co.uk

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Whether you are wanting to raise awareness of ME, CFS or Fibromylagia there are some simple things you can do to make a difference.

Extracts from Sue Jackson’s post giving some simple things you can do today:

“Participate in the CFIDS Association’s Virtual Lobby Day.

“Tell your friends and family about CFS…

“You and your friends and family can also donate money to help fund badly-needed CFS research…
“You can also donate to CFS research without spending any extra money by using a shopping donation site or links…

“If you have CFS, take a few minutes to fill out the research questionnaire at the Whittemore-Peterson Institute

See her post for full details International ME/CFS Awareness Day

The focus this year for www.fmaware.org is making Fibromylagia visible. Lana at Living, Loving It has some simple ideas for you:

“SEND the FM Aware Magazine link to 10 friends to help educate them about fibromyalgia.”
“TELL three people you meet today that it is Fibromyalgia Awareness Day.”
“SUPPORT the NFA and honor a loved one by sponsoring a “Lights of Hope” candle.”
“ADD the “Make Fibromyalgia Visible” logo to your e-mail signature…”
“BECOME an NFA fan on Facebook and keep up-to-date on all our latest news and information…”
“PLEDGE TO CARE and encourage others to join the NFA in its national advocacy efforts…”
“SHOW YOU CARE by placing one or more of our “Make Fibromyalgia Visible” products on your car or other prominent location…

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Indigo Shirl is sharing her ME story to raise awareness for ME/CFS and Fibromyalgia

“My story, like many others with ME, is one of exhaustion, pain, blurry vision, loss of memory, “cotton wool” head, disturbed balance, constant headache, depression and many other symptoms.

My ME happened at a time when most doctors were sceptical that the illness even existed, thankfully those days are a thing of the past (in most doctors surgeries), but for me there was no help available except medication for depression which I decided wouldn’t help me in the long run…”

Read her full post at Today is International ME/CFS and Fibromyalgia Awareness Day

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The 12th May is International ME/CFS and Fibromyalgia Awareness Day. During the month of May bloggers are joining together to help raise awareness and on this blog I’m collating a central list of all their posts.

Their approaches and subjects may vary but the one thing they have in common is wanting to get a message to you.

We have some wonderful posts for you to read …

BLOG POSTS FOR 2010 ME/CFS AWARENESS

During May 2010 new blog posts will be added here in chronological order:

PARTICIPANTS 2010

This is a copy of the lists on the Participants page

See Archive for Participants 2008-2009

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Ashy, who has ME, blogs about Fibromyalgia for awareness including symptoms, differences between the two conditions and links to resources.

She is also giving away a book Fibromyalgia: Simple Relief Through Movement to one lucky reader.

“I suspect that those of us who do not have Fibromyalgia, even if we do have ME/CFS/CFIDS do not really know what exactly it is. I know a couple of people (not that well, admittedly) who have Fibromyalgia, and still had only a vague idea of what it involved.  My basic understanding went as far as “ME with more pain” and “warmer climates help”… Recently i have been having more intense and different (for me) pain and have suspected that i may be developing some Fibro-like symptoms, so decided to look into it further.”

Blogging for ME/CFS Awareness Day 2010 by Ashy

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