To: ME/CFS Community

From: Llewellyn King

Date: June 8, 2014

Subject: Mothers March on Washington

Since I wrote and spoke about the need for a Washington presence for ME/CFS I’ve received many e-mails which ask, in essence, what next?

Here is a modest proposal of what I think should be done, and what can be done with a minimum of effort and a big impact: schedule a Mothers March at the U.S. Capitol on May 12, 2015.

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.

My thinking is: If we can generate the right publicity in the major media (and I mean across the spectrum, from NPR to the big newspapers), we may attract the patronage of a major foundation. This would support the creation of a national association for ME/CFS, devoted to lobbying and educating on behalf of the disease until it is established as a medical priority in Congress, the administration and the media. The need is urgent.

I was once sent a wise saying by the mystic Rabbi Nathan of Bratislav which said, in effect, “You will never leave Egypt, any Egypt, if you start by asking how will I make provision for the journey?” There is a life lesson in that — and a lesson for the ME/CFS community.

Maybe a benefactor with time and resources will emerge to organize this mothers demonstration. But, if not ,why not do it anyway?

Suppose right now you decide to go to Washingon, and make your way to Capitol Hill, wearing white with a blue sash (I choose blue because it stands out against white) and walk the halls of Congress, handing out literature that you have downloaded. That is the bare minimum, and it’ll have an impact.

If an organization emerges before then, so much the better, but it is not essential. But as a general proposition, a Committee of 100 is a well-tested, public-pressure device.

The thing is to commit, as individuals, to doing it now.

There is nearly a year to build passion, to get the local CFIDS associations engaged and to make the grand, seminal event of the Mothers March happen. If not en masse, go alone. But go. Start the movement with your white outfit and a blue sash, scarf or shawl.

The best organizations start with determined, committed, like-minded individuals. The power of one is awesome once that person empowers herself or himself. A leaderless demonstration is not leaderless if everyone agrees.

You asked me what should happen next, and my answer always is “Start something, if you are well enough or if you are an advocate. Just start.