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Here’s a new way to be a ME/CFS activist and go beyond raising awareness. The ME/CFS Worldwide Patient Alliance is

“a group of ME/CFS patient advocates who think now is the time for a change. We hope to create this change through an effective, cutting-edge advertisement campaign, specifically to address what needs to be done to improve the quality of life of individuals with CFS, also known as Myalgic Encephalomyelitis (ME). This will be the patients’ voice. It will be our message.”

“”Our campaign aims to highlight the need for more biomedical research, increased public awareness, superior education for physicians and other health professionals involved in our care, and the need for a new name, one that shows the true severity of the illness and not just a single symptom, present in a multitude of other illnesses.”

With support from individuals and organisations such as

One of their first actions has been to place a ME/CFS advertisement in the Washington Post

“Time for the US and UK governments to take the following actions:

  • Provide more funding for biomedical ME/CFS research;
  • Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;
  • Provide funding for XMRV/MLV clinical research in order to sustain momentum;
  • Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;
  • Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;
  • Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.

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Helen has organised a raffle with prizes donated by UK Channel Five.  Tickets can be purchased online and proceeds go to Action for ME

“Ellephantastic Draw in aid of Action for M.E.

Draw date: 3rd July 2010
Deadline to return/buy tickets: 3rd July 2010 2pm 
1st Prize: Red England T-shirt signed by Ian Wright
2nd Prize: White England T-shirt signed by Ian Wright
3rd Prize: Justin Lee Collins book “Good Times” signed by Justin Lee Collins
Plus other prizes including T-shirts (2) signed by The Gadget Show presenters & a set of signed pictures from The Gadget Show presenters
(All prizes have been donated by Channel Five) 
Tickets cost just £1.00 each”

Find out more  at Ellephantastic Draw in aid of Action for M.E.

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Maggie at Liverpool Leftovers has been reflecting on those with ME who face the loss of their personal lives, something that isn’t often written about.

“But I know of so many people with this DD (Damned Disease) who live alone, who cannot get out to meet with potential partners and friends, who have to face the possibility of never sharing their lives with anyone.

Meanwhile we are all left with clinics run on psycho-social theories that do not address the effects of this illness even in psycho-social terms.

I delight to have the joy of twin grandsons, but I despair that many of my fellow patients will be deprived of this joy in their lives.

It’s time the MRC and NICE woke up to the fact that around 250,000 people in the UK are not only lost to the work place, but also are losing out on one of the most important aspects of their lives – their family lives.”

From International ME Awareness Day 2010 – Maggie, Liverpool Leftovers

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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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There are lots of simple things you can do to raise awareness of ME/CFS this May.

Take and share a photograph that represents something about ME/CFS. Perhaps of yourself, your medication/suppliments, what you can see from your bed or something that represents a particular symptom.

Share your photo with friends and family, on your blog, on social networking sites like Facebook, MySpace or Twitter (using Twitpic, Moby or a similar service).

If you use a photo sharing site like Flickr considering adding your photo to different groups to raise awareness. 

For example the view from your window could be added to local groups, groups about city or garden views, self portraits, windows or even a group for the type of camera you used.  Try think ing beyond chronic illness and health groups to try and reach people who may have no experience or knowledge of your condition.

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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.”

Source

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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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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