Archive for the ‘mecfs09’ Category

A quick thank you to everyone who has blogged and tweeted for ME/CFS Awareness and who has done their bit to spread the word.

image by rachelcreative

Our list of blogger’s posts for ME/CFS has grown since last year and I’m so proud.  Twitter had lots of ME/CFS Awareness activity with events happening across the internet and around the world.

The week has taken a bit of a toll on me personally, as I’m sure it has for others, so forgive me that I haven’t managed to get around to read and comment on all the posts.  I will be catching up with you just as soon as I’m able.

If you have blogged for ME/CFS Awareness Day/Week and you’re not on the list of 2009 participants please let me know.  Still a day or two left of Awareness Week so it’s not too late to blog.

For all who have read and written – thank you.


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A ME/CFS photo exhibit organised by the CDC called “The Faces of Chronic Fatigue Syndrome” has been travelling to cities across the US.

The exhibit features 10 portraits from well-known photographer George Lange. He photographed 8 persons with ME/CFS and 2 experts for the travelling exhibit. The huge portrait banners, which are more than 7 feet tall, include quotes from the 10 participants, who describe ME/CFS and the impact it has on patients and their families.

  • Mayfair Mall Wauwatosa, WI May 11-17, 2009
  • Westfield Meriden Meriden, CT June 15-21, 2009

cdc faces

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A campaign for ME/CFS Awareness Week by Action for ME features the faces of people of all ages and backgrounds affected by the illness.

faces of me“… we want them all to tell us and the world their story. I know, from those we have received already, that they will be stories of courage, determination, endurance and above all, hope.

That is why we as a charity campaign so hard for more research into the causes and development of this invisible but often very disabling illness.”


You see all the Faces of ME through the web site and read some of the stories behind the people too.

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The Waterloo Wellington ME Association (WWMEA) is offering a free lecture focused on natural therapies in ME on 26 May 2009.

The WWMEA operates in Southwestern Ontario within Wellington County and the Region of Waterloo serving cities such as Cambridge, Guelph, Kitchener and Waterloo (KW).

image by road fun on flickr

image by road fun on flickr

WWMEA Free Public Lecture
 Tuesday May 26, 2009
 7 p.m.

Dr. Michael Reid
Dr. Som Thammasouk

at the Adult Recreation Centre, Room 3, 185 King St. S. (at Allen St.)
(beside The Brick Brewery), Waterloo, Ontario, (view a map)

 Health Essentials for People Living with M.E.

 Join Michael Reid & Som Thammasouk, Naturopathic Doctors, for a discussion on natural therapies and M.E.  This information is vital to individuals looking to optimize their health.

This seminar will cover:

  • Testing for CFS/ME to determine the root cause of your symptoms
  • Effective treatments for CFS/ME and most recent advancements in treating CFS/ME with complementary medicine
  • Discussion on Mind-Body Medicine

More details on the WWMEA site

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Highlighting just some of the ME/CFS Awareness clothing, badges and other merchandise available online.

Please check availability, terms and where proceeds go to with individual sellers.

T-shirts for men and women from muddipuppy on etsy:

il_430xN.66617038 be a light mens muddipuppy be a light womens muddipuppy etsy  be a light muddipuppy etsy


T-Shirts from www.redbubble.com/people/ginnymac/

www.redbubble.com/people/ginnymac/  www.redbubble.com/people/ginnymac/

Postcards from CF-Alliance

springp.jpg.w300h233 winterp.jpg.w300h234

Badges, clothing and more from Slamdunks Apparel on Cafepress:

103970254v13_350x350_Front 133914873v6_240x240_Front 97657298v23_350x350_Front

Clothing, badges and more from CFS_FMS_MSC on Cafepress:

17333791v0_150x150_Front_Color-White 17941415v2_350x350_Front 93983707v7_150x150_Front_Color-White

T-shirts, sweatshirts, mousepads and more from CFS Days Gift Store:

fallen2 wakefoo2

Awareness bracelets from Girlie Girls Jewellery Studio:

me cfs bracelet me cfs healing bracelet

Fibromyalgia awareness necklace, bracelets and more from www.moongoddessnocturna.com:

fms necklacefms bracelet charms fms hat

Enamel ribbon badges from New Jersey Chronic Fatigue Syndrome Association:


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twitter me cfs searchHere’s a quick reference to see tweets about ME/CFS on Twitter 

Users can save this search to use it again easily.

There’s lots of Twitter activity spreading awareness of ME/CFS as well as FMS and related conditions.

You can also see a list of Twitter users in the sidebar bar under Social Media.  People listed there are those who asked to be part of the reference list here on the ME Aware blog for 2009 participants raising awareness.

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On International ME/CFS Awareness Day Invest in ME has published an open letter to the Chief Medical Officer in the UK.

As you know Invest in ME is a UK charity that was created by families of children with ME or persons who suffer from ME themselves and who were appalled and frustrated at the lack of action from government, departments of health, healthcare organisations, charities and individuals – all purporting to service or represent people with ME yet seemingly doing little or nothing.

They indicate that a seat has been reserved for the Chief Medical Officer at the International ME/CFS conference in Westminster, London later this month despite a lack of engagement from the government over the past 4 years.

letters sunside flickr

image by sunside on flickr

A summary of concerns raised and points made:

  • “Despite inviting you to speak at our conferences or attend as our guest you have declined on every occasion … … A petition was recently raised by people with ME asking you to attend this year… Invest in ME have reserved a seat for you at this year’s conference in anticipation of your response.”
  • “[making] ME a notifiable illness within schools due to it being the greatest cause of long-term absence through sickness from school for children and teachers”
  • “[refusal] to visit the Whittemore-Peterson Institute for Neuro Immune Diseases (WPI) in Nevada, USA. This is a centre which performs biomedical research into ME. It is considered by many in the UK and abroad as the model for any research and treatment facility to find treatments and a cure for ME. “
  • “we again ask that you reflect on them [the main issues] and how a lack of action is affecting millions of lives – of young people, of families, of chronically ill people. Yet it has been obvious that there is little intention by the establishment of doing anything to help people with ME.”
  • “At last year’s conference your representative would have heard (if he had stayed long enough) of the effective treatment of a subset of ME patients … using antivirals … What is the difference between an illness which is yet to cause substantial harm to the population and an illness which has been causing major effect on millions of citizens of this country for decades? Surely if access to antiviral drugs is allowed for flu then it ought to be allowed for a major chronic illness.”
  • “We ask you again, on this day of awareness, to make an exception, cancel your plans and personally attend this major international conference, on 29th May, taking place a few hundred metres from your office.”

And finally

image by Erica Marshall on flickr

image by Erica Marshall on flickr

“On this day of awareness Invest in ME invite you to make a complete change in direction regarding ME and take on the role of champion of people with ME.

We invite you to make the treatment and eventual cure of ME your personal responsibility, something which no other government department or medical research organisation or vested interest can hijack or use for their own purposes.

On 29th May in Westminster, London, there is a seat reserved for you to listen to the latest, groundbreaking research being performed by the best researchers in the world. The conference discusses severe ME.

On this day of awareness Invest in ME invite you to make a difference, draw a line in the sand and advance the cause of progress for people with ME.

Let the public win,

Yours Sincerely,

The Chairman and Trustees of Invest in ME”

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