Archive for the ‘MCS’ Category

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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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 …


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


This is a copy of the lists on the Participants page

See Archive for Participants 2008-2009

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In May 2010 we’re asking you to blog for ME/CFS Awareness.

We welcome bloggers for ME, CFS, CFIDS, FMS, FM, MCS, PVFS, Gulf War Syndrome and related conditions.

mecfs ribbon sqor400If you don’t usually blog about your health or the health of someone you know please don’t let this put you off from blogging about it in May.  Your post can help us raise awareness amongst an audience who may not usually hear about this group of conditions.

If you are going to blog for ME/CFS Awareness this May we would like to add you to our list of Participants for 2010. Here you can see an up to date list of bloggers and during May we’ll add their posts there too.

Also on this blog you will find Badges you can use on your blog, web site or for your profile picture on sites like Facebook, MySpace and Twitter.

As well as blogging there’s also a list of ideas and links for What You Can Do to raise awareness of ME/CFS.

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If you are blogging for ME/CFS Awareness this May we would like to add you to our list of Participants for 2009. You can see an up to date list of bloggers and their posts there.

mecfs ribbon sqor400We welcome bloggers for ME, CFS, CFIDS, FMS, FM, MCS, PVFS, Gulf War Syndrome and related conditions.

Also on this blog you will find Badges you can use on your blog, web site or for your profile picture on sites like Facebook, MySpace and Twitter.

Along with a list of ideas and links for What You Can Do to raise awareness of ME/CFS.

Read About ME/CFS and what’s behind this blog or read/search through the blog posts here to find activities and events happening in your local region and internationally.

Blog Posts for ME/CFS Awareness 2009

New posts will regularly be added to the end of the list:

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An awareness and fundraising walk is being held on May 23 2009 by Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy or P.A.N.D.O.R.A.

Their motto “We were built on Hope. Strong on Advocacy. Finding a Cure through Research.”

walkathonwebsquare03232009Saturday, May 23, 2009, 7:30 AM
CB Smith Park
900 N. Flamingo Rd.
Pembroke Pines, FL 33028

Check -in
: 7:30 to 8:30 am
Walk begins: 9:00 am sharp

Click here to register

Walk with P.A.N.D.O.R.A to benefit children, men and women stricken with Neuroendocrineimmune Disorders such as: chronic fatigue syndrome/ME (CFS/ME), fibromyalgia (FM), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and chronic Lyme disease (CLD).

Your participation supports research that can lead to scientific breakthroughs, physician training, scholarships for the chronically ill, quality of life outreach programs and advocacy initiatives.

There is a 5k and a 1 mile walk on the day and the registration fee includes lunch. This fundraising event will go towards PANDORA‘s key missions.

P.A.N.D.O.R.A. Inc. is founded on the following principles:
To be one strong voice for many© . . .

  • Creating and raising awareness
  • Advocating for quality of life Issues
  • Providing support and educational resources
  • Establishing partnerships in our worldwide community
  • Supporting scientific research
  • Encouraging creation of empowerment groups
  • Organizing educational conferences

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    A multi faith worldwide event focusing on prayer and meditation will take place on 12 May 2009 to mark International ME, CFS, CFIDS, FMS Awareness Day.

    The event is in it’s second year and holds the affectionate nickname Time2Link

    This inter-faith event welcomes participants from all religious and spiritual traditions, philosophers, free-thinkers and non-believers.

    It is a time to set aside our differences, in the knowledge that we all share similar symptoms with our health conditions and wish each other well.

    Just by linking-in, your thoughts and prayers will add to the input from others connecting to the network on this day and together we will generate something wonderful that radiates out into the world…like a lighthouse, that beams out a light signal and helps to guide each individual on their way.



    All are welcome to join in and support those with ME, CFS, CFIDS, Post Viral Fatigue Syndrome, Fibromyalgia Syndrome and related conditions such as Multiple Chemical Sensitivity or Chemical Injury and Myofascial Pain Syndrome.

    You are invited to make a prayer, meditation, visualisation or even just a wish on 12 May between 12 noon and 12.30pm local time.

    Read more about this event at the Time2Link web site

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