Archive for the ‘advocacy’ Category

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

– Share a YouTube or Vimeo video from a sufferer or activist, or make one of your own.

Using your blog, Facebook, Twitter, MySpace or email you could share a video that highlights some aspect of ME/CFS, Fibromyalgia and/or related conditions.

There are lots of videos out there on the internet and there’s a short selection below. Or why not make your own?

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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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Jennifer Phillips works on raising awareness, campaigning, fundraising and outreach programmes for Fibromyalgia all year round.  During May’s Awareness Month she continues her work. She also shares her birthday with Awareness Day on May 12th. Her Get The FA-CTS blog details much of the work she is involved in.

Jennifer Phillips is a spokesperson and mentor for Fibromyalgia Awareness, working towards increased education and funding.

s an advocate with CFIDS, American Pain Foundation, American Fibromyalgia Syndrome Association, and many other organizations within the Fibromyalgia Community.

Jennifer has addressed Congress, lobbied on Capital Hill, and helped raise over $2 Million for research. Jennifer is a mentor to others with Fibromyalgia, sharing her personal story of triumph; a story that has been documented in 6 National and 2 International Publications. As a survivor, Jennifer not only shares her knowledge of how to overcome the disease, she shares her birthday, May 12th with International Fibromyalgia Awareness Day!

Her mission is to continue to empower others to overcome the often misunderstood disease, and to aid in establishing May as National Fibromyalgia Awareness Month.

Jennifer is a Program Manager with a company that holds patient outreach and educational programs for chronic conditions which is why she is so passionate about working for them to help others.

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Persons with CFS, CFIDS, ME and FM in Massachusetts can find advocacy resources on their local Association’s web site.

The Massachusetts CFIDS/ME & FM Association has advice about letter writing for 12th May and International Awareness Day for CFIDS/ME and FM.


image by Tim Morgan on flickr

Individuals can describe their personal experiences with these illnesses, as well as emphasize the need for national recognition and increased research funding of CFIDS/ME and FM. Educating others, communicating the needs of this patient community and/or taking action on other issues goes well beyond what can be achieved in a single day. Responding to various opportunities or situations that may arise throughout the year is a constructive way to make use of one’s knowledge and experience of the illness.

Their resources include a sample letter, contact details for congress and senate, as well as links to some key advocates.

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