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
- R.E.S.C.I.N.D.
- Phoenix Rising
- P.A.N.D.O.R.A. Inc.
- Rocky Mountain CFS/ME and FM Association
- Vermont CFIDS Association, Inc.
- Wisconsin ME/CFS Association, Inc.
- CFS Solutions of West Michigan
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.
With regards to the XMRV advert for the Washington Post (which doesn’t actually name the virus strangely), would you consider making read only JPEGS of these, like the one above, which could be distributed across the net. If people were able to print off multiple copies of your advert ‘flyers’ from their home PC or local print shops we could start sending pro ME / XMRV propaganda from our homes to MPs, health clinics, support groups, and even through people’s doors! Seriously would could send this stuff everywhere.
Let me know what you think
Richard Bowles
Mr. Bowles,
That’s a great idea. You should just do it. One thing I learned from being a community organizer, before getting CFS/ME, is that just one person can make a difference. Of course we are used to hearing that – but it is really very true. Anyone (almost) can pitch in and print out things like this to distribute in doctors’ offices and anywhere else we hang out. Just using that to start the conversation about CFS one person at a time is a way to start changing society for the better. Word of mouth is a powerful powerful tool.
I think your idea is great because once they are printed out, you can always just carry a few in your bag or in the car. It could be an ad like this, or even just printing out CFS related news articles, or a page from a website.
We do not have to ask permission to get started on this kind of advocacy. I encourage you to go for it.
It’s not mine. I’m just reporting what ME/CFS Worldwide Patient Alliance are up to. Please follow the link and take it up with them – thanks :) http://mcwpa.org/
A flyer like this would be terrific, wouldn’t it, and really grab people’s attention! I picture it going everywhere on Facebook, people sticking it in shop windows.
I wish.