Send your shoes to protest virtually for you in #MEAction's Millions Missing campaign!

[Simon]

I think in many situations putting the time and energy into a fundraiser or fundraising on the street would be better. This could include giving out information.

I would encourage people to do both, particularly where there is a brilliant idea like "Missing Millions" to get behind. I've donated to research, was part of the patient crowdfund for Ian Lipkin and co (patients donated $225k in total) - and I'm backing this too.

I remember the fall-down protest in London in 2013 (?) which had 95 (?) people at it and had virtually no effect including no (or virtually no) media coverage.

That's what makes the Missing Millions idea so brilliant, especially the empty shoes: we are too ill to protest in person - a big reason thte All fall down protest faltered, and this new approach is tailored to letting people make an impact from their beds.

One of the reasons I think there has been a lack of researchers in the field is that there has been a lack of money raised privately.

More private money will always help. But ultimately governments had the deepest pockets - and pay some of the hefty price of ill-health (meagre benefits, not so meagre lost taxes) - so they can and should be funding mecfs research properly. Campaigning, if we can find a way to do it right, can help release millions.

I'm all in favour of people donating to make research happen. I'm all in favour of people campaigning for more research funding too.

 

[Dolphin]

I'm all in favour of people donating to make research happen. I'm all in favour of people campaigning for more research funding too.

I'm also highlighting the 3rd option: fund-raising. I don't just mean fundraising from the ME/CFS community but the ME/CFS community and its contacts fundraising for research. It happens a bit in the UK but very little elsewhere in the world. Fundraising can include giving the public information and sometimes can result in media coverage too.

 

[ahimsa]

I like this idea! I don't think it's an either/or (this OR fundraising). We can have multiple activities going on.

If we can send enough shoes and get some good media coverage then I think the photos will make an impact.

Anyone in my area (Portland, OR) who is either too sick to spend energy wrapping up shoes or who can't afford to pay for shipping please send me a direct message. I'd be happy to gather up shoes from a few folks around town and send them to Washington, DC. There's enough lead time for this activity that I can budget the energy needed for driving and such.

 

[Dolphin]

More private money will always help. But ultimately governments had the deepest pockets - and pay some of the hefty price of ill-health (meagre benefits, not so meagre lost taxes) - so they can and should be funding mecfs research properly. Campaigning, if we can find a way to do it right, can help release millions

I think this is a misconception particularly for outside the US.

In the US, a lot of health care is provided privately and the government doesn't help a lot of people that much with their healthcare. What it does do is provide a lot of money for research.
Also US politicians can be involved in deciding that millions go to particular conditions.

However, the situation in other countries is a lot different. Governments are much more involved in providing the health care for most of the population. People then can have the misconception that governments are the people who are similarly responsible for research progress. However the amount of money spent on research is usually only a tiny fraction of the total healthcare budget.

Given the large numbers of conditions that are (e.g. I heard 7000 mentioned before), individual governments only give relatively small amount to individual conditions (a lot of the health research funded in many countries also goes to basic research that isn't specific to any condition).

I recall looking at the figures for multiple sclerosis (MS) in the UK around a decade ago. The Medical Research Council was giving around £1 million per year to MS research. By comparison, MS charities were raising around £13 million per year for research.

Given the large numbers of people affected by ME/CFS, large amounts could be raised if the ME/CFS community and its contacts concentrated on fundraising for research. In most countries, very little money is raised for research despite thousands/tens of thousands/even hundreds of thousands being affected.

Lobbying for research in most countries may not make much progress because health research is normally kept at arms length from politicians. I did some myself in the past soon after I was diagnosed but see it now as wasted energy.

I think the attitude that its governments' responsibility to fund most of the necessary research has held back progress. Too many people do nothing waiting for governments to act.

Lobbying for research can have its place in the US but particularly in other countries I think fundraising for research would lead to more progress . Fund researchers privately and then some of them should go on to apply for government/taxpayer funding. Without such money, there will be few researchers in the field in any one country.

 

[Forbin]

This is a great idea!

I hope they've considered the logistics.

Obviously, since some 80% of people with ME/CFS are not diagnosed, they won't be getting a million pairs of shoes - which is probably a good thing. They would need a fleet of trucks just to move them.

Out of curiosity, I did a quick calculation about how much space a million pairs of shoes would actually take up. Initially, I wanted to see how much real-estate they would occupy on the Mall in Washington D.C.

It turns out, the shoes would fit better on the "Ellipse," part of the public park that's just south of the White House and just north of the Mall.

Roughly speaking, a million pairs of shoes, touching each other, would just fit into the Ellipse... barely.

It does give you a sense of how many people with ME/CFS we're talking about.

For scale, that "small" structure at the top center-right of the image is the White House.​

​

https://en.wikipedia.org/wiki/The_Ellipse

​

 

[daisybell]

My partner has just suggested that he could send a pair saying "missing wife"....

 

[Dolphin]

Anyway, I hope people with ME/CFS and/or their families/friends do something this May.
I was just giving my opinion on what I thought was best, but I don't think doing nothing is better than doing something.

 

[Justin30]

Where do we send them? Has the info not been released yet?

I am missing something?

 

[Sasha]

Where do we send them? Has the info not been released yet?

I am missing something?

The address hasn't been released yet. You have to fill in the form on the link and they'll email you when they've got the address.

 

[Comet]

The form said something about the address you fill in being the same as the return address that you ship the shoes from. Does this mean we can't send via Amazon/EBay/etc? Anyone know? Will send a pair either way though! Fabulous idea!

 

[searcher]

I had the same problem, @searcher.

Thanks @Sasha! A volunteer made some changes today so please let me know if it is clearer now-- I also found it to be confusing initially.

We are so happy to see all of the enthusiasm! There are a lot of logistics to help out so we can use all the volunteers we can get. And it would be wonderful to get leaders for the other HHS locations if people can help out. It's best to have a few leaders is possible so there are backups depending on health-- the San Francisco crew is a mix of patients and family members. You can sign up for leading a new location at http://millionsmissing.meaction.net/locations/lead-a-new-location/.

 

[Justin30]

@Sasha and @searcher do you kniw if we were able to get another group involved in this protest?

- was the Lyme Group contacted
- was the Dyautonomia group contacted
- was any other groups contacted?

Did we get participation from other communities other than the ME/CFS Community?

 

[searcher]

Hi @Justin30 - I helped out in the initial stages of discussion but unfortunately have not been able to be very involved since. Would you mind emailing your questions to the organizers at millionsmissing@meaction.net?

 

[Justin30]

Hi @Justin30 - I helped out in the initial stages of discussion but unfortunately have not been able to be very involved since. Would you mind emailing your questions to the organizers at millionsmissing@meaction.net?

Thanks Searcher if I hear something I will post it.

 

[Sasha]

Latest details:

We are now accepting shoe donations!

To participate in the #MillionsMissing campaign, please send your shoes to:

Paige Maxon
P.O. Box 26051
Winston Salem, NC
27114

(The shoes will be transported to the DC demonstration from NC)

AND Fill Out this Form, if you have not already.

**Include your name on the return address of your shipment to match your name on the form.**

Please have your shoes mailed by Tuesday, May 10th

You can send a pair of old shoes or if it’s difficult to get to the post office, order shoes on Amazon or Ebay and have them shipped directly to us. Try to send a pair of shoes that represents you – perhaps your personality, fashion style, age, gender, or careers and hobbies that you may not be able to participate in any longer.

During the protest, we will post images of these shoes to #MEAction’s social media account using the #MillionsMissing hashtag, so patients can see that they are being represented during the demonstration. The shoes will also be tagged with your information from the form.
If you have any questions, please email millionsmissing@meaction.net
Paige

--
Paige Maxon
#ME Action
Community Organizer

 

[snowathlete]

Great idea. I will do this.

 

[Old Bones]

@Sasha What am I missing about the process? I followed the "Fill out the Form" link from your most recent post above, on two different types of computers. Both times, I got to a page that didn't include a form -- just the titles Section 1 of 2 with a web address that also went nowhere, and Section 2 of 2, with no fields to fill in.

Edit: The link from the first post in this thread did work. The link in today's post doesn't.

 

[Sasha]

@Sasha What am I missing about the process? I followed the "Fill out the Form" link from your most recent post above, on two different types of computers. Both times, I got to a page that didn't include a form -- just the titles Section 1 of 2 with a web address that also went nowhere, and Section 2 of 2, with no fields to fill in.

Edit: The link from the first post in this thread did work. The link in today's post doesn't.

Sorry, I haven't done this yet myself - if there are problems, I suggest contacting Paige.

 

[Hip]

Definitely a brilliant idea, and the sort of unusual thing that should pique the interest of the media. It kind of looks like an intriguing art installation.

 

[Simon]

Does anyone know if it's possible for someone in the UK to do this via ebay.com or amazon.com ie despatching from USA but with an ebay.co.uk or amazon.co.uk (ie UK-based) account?

Thanks