Llewelyn King proposes Mothers March for ME, U.S. Capitol, May 12, 2015.

[Simon]

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:

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.

Read the full article at 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:

• 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​

• 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.​

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.

 

[Sasha]

What a fantastic idea! Llewellyn King is an absolute star.

 

[taniaaust1]

What a great idea. Thank you to Llewellyn King.

I think Mothers against ME march would have more impact on the general public being its focusing solely on children (which of cause everyone cares greatly about!)... then a families march. It just has more of a ring to it.

It shouldnt stop others eg fathers and guys, joining in anyway.

 

[Sasha]

I didn't read this as being solely about mothers (or relatives) of child-age children with ME but of all mothers (or relatives) of anyone, including adults, with ME. Have I misunderstood it?

Either way, I can see that a lot of people might come to the same conclusion you did, @taniaaust1 (unless I've misunderstood you). I wonder if that needs clarifying by Llewellyn.

 

[taniaaust1]

Yeah I understand it was all mothers thou I did take its name literally at first cause of the Aspergers

Many of the general public thou will think of the sick kids when they hear term "mothers"..and that I think is good as it gets more compassion out of them.

I didnt word my post well. sorry.

 

[Sasha]

Yeah I understand it was all mothers thou I did take its name literally at first cause of the Aspergers

Many of the general public thou will think of the sick kids when they hear term "mothers"..and that I think is good as it gets more compassion out of them.

I didnt word my post well. sorry.

Don't be sorry - I think you've usefully highlighted a potential source of confusion.

 

[medfeb]

Hi

I'm one of the people working on this effort. We are just getting going but I can say that the intent for this march is to be broadly inclusive of the entire family as this disease can strike any member of the family and because this disease has an impact on the entire family. Of course, there can be different themes within that and certainly a theme of parents fighting for their kids - whether they are children or adults - is emotionally evocative.

If you have the energy and interest in volunteering to make this a reality, please send me a PM. For everyone else, we will get mechanisms in place to provide ideas and to share information and plans

Thank you
Mary Dimmock

 

[Mouse girl]

I'ld love to go. I've been writing about this but no one seams interested.

 

[catly]

I'm really impressed by the protests in Washington DC, and all over NY over the last few weeks and this weekend regarding the Eric Garner and Furgeson verdicts and the 12 year who was shot by police in Clevleand Ohio.

I have to say that if I wasn't ill I would be out ther marching with them....

But I have MECFS and there are supposedly 1 million of us in the US, 7 million around the globe who have been abused for years by the medical profession, government agencies, friends and family.

I was also impressed at @OneWaySurvival's ability to put together a last minute protest outside of the NIH for the P2P meeting this week. Kudos to him and his family, and thanks to @caledonia for helping out.

It would be great to have a large protest in May, especially since by then we will have the IOM and P2P final reports...whether they turn out good or bad...it's time to bring some attention to our cause.

Hopefully with the Meadvocay group's help and some advance planning maybe we could pull off and larger scale protest in DC, or heck, how about the nation or maybe even around the world?

I know it's hard for many of us to plan ahead of time, but last minute isn't great either. I personnally would be willing to fund an "actor" to stand in for me if I can't make it.

So could we pull this off?

 

[caledonia]

Hopefully with the Meadvocay group's help and some advance planning maybe we could pull off and larger scale protest in DC, or heck, how about the nation or maybe even around the world?

I know it's hard for many of us to plan ahead of time, but last minute isn't great either. I personnally would be willing to fund an "actor" to stand in for me if I can't make it.

So could we pull this off?

Yes, MEadvocacy.org will be helping with the Mother's March. Assuming we have the funding in place for May, the PR firm will be assisting or maybe even organizing the whole thing.

We've hit our first goal of $5000, which means we're able to get started with the PR firm in January. We are now fundraising for another $5000 by early January to fund February. You heard it hear first...

The PR firm assures me it's typical to fund raise as you go along like we're doing, so no worries there.

If you would like to donate, go to this page (the donation form is at the bottom): https://meadvocacy.nationbuilder.com/donatepr

 

[Helen]

But I have MECFS and there are supposedly 1 million of us in the US, 7 million around the globe who have been abused for years by the medical profession, government agencies, friends and family.

Maybe this could be arranged all over the world the same day? That would be something.

 

[snowathlete]

Maybe this could be arranged all over the world the same day? That would be something.

I think that's what we need to do. It's importamt that people well enough make the effort to make it happen and that those too sick are represented somehow. I thought a skypelink on a big screen or something like that and a well organised list of people in five minute segments or something.