Posted in activism, advocacy, awareness, canada, cfids, cfs, cfsme, health, me, mecfs, uk, usa on February 8, 2011|
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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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Posted in australia, awareness, blog, blogging, canada, cfids, cfs, cfsme, fibromyalgia, fms, health, international, MCS, me, mecfs, mecfs10, northern ireland, PVFS, scotland, uk, usa, wales on May 12, 2010|
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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:
- Living With M.E. – Paul, The Waterside
- ME/CFS Awareness Month: Lessons for everyone from an artist with ME – Michael Nobbs
- M.E. Awareness Week 2010 – The Year In Review – Greenwords, Green Words Growing
- Soft Animal – Signs, Reading The Signs
- Three generations for Mother’s Day – Jody
- My Face … My Strategy – Jody
- Lets Blog,……dooby , dooby ,,,,lets blog!! – Helen Laurence, Me, Myself and CFS/ME
- CFSAC Meeting Today in Washington, DC – Sue Jackson, Learning to Live With CFS
- M.E., Invisibility and Blogging – Cusp
- Blogging for ME/CFS Awareness Day 2010 – Ashy
- ME/CFS Awareness – Natalie
- It’s International ME/CFS Awareness Day!!! – Alex, The Cabbage Stalk
- Sometimes I Feel Like A Ghost – Karmen, Embers & Ash
- Rachel, Me and ME – GrovesMedia
- ME Awareness Poem – Jane, Reversing ME
- Today is International ME/CFS and Fibromyalgia Awareness Day – Shirl, IndigoShirl
- ME/CFS Awareness Day – Sassy, Supersonic Chronic
- A video and a place to donate – Cinderbridge
- Why another “awareness” day? – Joey, Newly Nerfed
- ME Awareness Day – Beauty
- Memoirs of Chronic Fatigue Syndrome – Laura Ann, Learning from Sophie
- Out of sight, out of mind – Michelle, Behind the Surface
- Me Outside In (Drawing) – RachelCreative
- M.E. and Me – Juliet, The Clockwork Dodo
- Today is International Fibromyalgia Awareness Day – Lana, Living It, Loving It
- A Determined Spirit: Dominique’s story of living with CFIDS – Dominique, 4 Walls and a View
- May 12th: ME/CFS Awareness Day – Laurel, Dreams at Stake
- 12 von 12 on CFIDS/CFS/ME Awareness Day – Dots & Yarns
- International ME/CFS Awareness Day – Sue Jackson, Learning to Live With CFS
- International ME/CFS & FM Awareness Day– Nikki, Freya Bean
- CFS/ME Awareness Day – Dawn, Daily Life with “Hidden” Chronic Illnesses
- International ME Awareness Day 2010 – Maggie, Liverpool Leftovers
- ME Awareness Week – Spirit of Phoenix
- In Denial – Claire, Scríbhneoir páirt-aimseartha
- May 12 is ME/CFS Awareness Day – Laura Ann Dunks, The Voice Within
- Raising Awareness of ME/CFS – Factor Fiction
- May 12 – ME/CFS Awareness Day – Nina, Nina Colors
- My M.E. Week … – Beauty
- ME/CFS awareness day – James, One Second
- For ME – Ros, Funny Blood
- CFS/ME – Sue, Crystalrainbow
- Thoughts on ME/CFS Awareness Day 2010 – Rachel, Blue Coffee Mug
- Ellephantastic Draw in aid of Action for M.E. – Helen, Me Myself and CFS/ME
- 15 – Green Words, Greenwords Growing
This is a copy of the lists on the Participants page
See Archive for Participants 2008-2009
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Posted in australia, awareness, canada, cfids, cfs, cfsme, fibromyalgia, fms, health, me, mecfs, uk on April 30, 2010|
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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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Posted in awareness, canada, cfids, cfs, cfsme, event, health, me, mecfs, mecfs09 on May 14, 2009|
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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
WWMEA Free Public Lecture
Tuesday May 26, 2009
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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