Simon
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This has been posted elsewhere but I think it deserves its own thread
Llewelyn King's brilliant proposal for a "Mothers for ME March on Washington" wearing Blue Sashes, slated for May 12 next year, ME Awareness Day.
From the June Issue of the Global Chronicle:
There was a follow up piece, also in the June issue of the Global Chronicle
May 2015 - The Great Blue March to Capitol Hill
The memo of Llewellyn King you just read on the
page before, has been sent by him to a group of
some 30 patients and patient advocates all over.
None of them thought the idea strange or
unrealistic: all of them commented that it was a
great one.
Immediately the exchange of a stream of ideas on how to effectuate of what has
been written in the memo was triggered. This is a summary of what has been
proposed up till now:
This needs a clear, concise message.
You as a reader are invited to mail your ideas to: MarchOnME@gmail.com
Kindly note that the title Great Blue March.. is just the title of this article.
Llewelyn King's brilliant proposal for a "Mothers for ME March on Washington" wearing Blue Sashes, slated for May 12 next year, ME Awareness Day.
From the June Issue of the Global Chronicle:
I envisage about 100 mothers of ME/CFS sufferers walking through the Capitol
wearing distinctive sashes; a very dignified demonstration -- with lots of
handouts for anyone who wants one.
Marchers don't have to be confined to mothers. But if mothers predominate,
there will more media attention than if it is just a general demonstration. I think
if everyone is wearing, say, white with a blue sash, and women far outnumber
men, that will have impact.
There is a long and effective history of mothers en masse changing history:
South Africa and Northern Ireland are two examples.
The aim of this demonstration should be to inform the 113th Congress and serve
notice on the agencies of government that the ME/CFS community wants parity
in research dollars with other diseases that are more in the public eye – and
right now.
This demonstration – and there is nearly a year in which to plan it -- should be
seen as the beginning of something big and enduring, not just a one-time or
even an annual event.
There was a follow up piece, also in the June issue of the Global Chronicle
May 2015 - The Great Blue March to Capitol Hill
The memo of Llewellyn King you just read on the
page before, has been sent by him to a group of
some 30 patients and patient advocates all over.
None of them thought the idea strange or
unrealistic: all of them commented that it was a
great one.
Immediately the exchange of a stream of ideas on how to effectuate of what has
been written in the memo was triggered. This is a summary of what has been
proposed up till now:
- March on the Capitol in Washington May 2015 or shortly after.
- Whom: most opted to organize a “Mothers against ME” march, as thatmight have the greatest emotional impact. The other option is to have a“Families against ME” march. What’s important is the message – ME/CFSis a devastating disease that can strike men, women and children but thataffects the entire family.
- How: to be determined the upcoming months, preferably by as manypersons as possible.
- Where: not only in Washington DC, maybe also in other states of the USAand countries all over the globe, simultaneously.
- Initial thoughts on the purpose: Nothing will change with the public policytoward ME until we enlist the support of government and the public. AMarch on ME is intended to help achieve that byo Build awareness with Congress, the media and the public about thedevastation caused by ME and its impact on families and our country.
o Inform the public and Congress about the failures in research, how abysmal medical care is, and how stigmatized patients are.
o Request a congressional committee to investigate the public health policy failings that have devastated the lives of one million Americans and 17 million patients world-wide
o Request a congressional committee to investigate the public health policy failings that have devastated the lives of one million Americans and 17 million patients world-wide
- Extra’s: lifestream the march, billboard size poster, Banner of Hope-quilt,three to four simple statements to be repeated again and again.
- Follow up/embedding in:
o Via press and congressional committee to Congress, via Congress to HHS for vastly more funding for research and for centers of excellence and appropriate clinical guidelines. ME costs the USA an
estimated 18- 23 billion dollars a year.
estimated 18- 23 billion dollars a year.
This needs a clear, concise message.
You as a reader are invited to mail your ideas to: MarchOnME@gmail.com
Kindly note that the title Great Blue March.. is just the title of this article.