Archive for the ‘usa’ 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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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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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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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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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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    On 9th May 2009 there will be a Gift Auction in aid of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA).

    The group is run by persons with CFS and their famillies to support persons with CFS.


    image by chris.pepline on flickr

    The 2009 Gift Auction to benefit the NJCFSA

    Saturday May 9, 2009

    at VFW Post 2639, 1515 Corlies Avenue Neptune, NJ.

    Doors open at 6:30 PM. * Drawing: 7:30 PM

    Admission: $7.00 in advance, $10 at the door

    *Adults only*

    Admission includes 1 sheet of regular-basket tickets, coffee, tea and cookies.

    Additional tickets and larger-basket tickets available at an additional cost

    All proceeds go to NJCFSA

    pinsmallThe NJCFSA also sells blue ribbon enamel pins/badges at $3.00 each plus $2.50 shipping and handling.

    Plus they have a poster that can used for campaigning.

    Please see the NJCFSA web site for more details.

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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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