The #MillionsMissing with ME/CFS are getting organised!

Millions Missing demonstration in Washington, DC. (Photo by Mary F. Calvert)
Millions Missing demonstration in Washington, DC. (Photo by Mary F. Calvert)

Major Milestones!

History was made on the 25th of May – with the #MillionsMissing campaign! We want to congratulate and thank #MEAction who launched this initiative and everyone in our collective community who was involved with this effort.

This campaign was designed to highlight crucial issues for people with ME/CFS and to help our community come together and make some noise about them:

[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]”patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.  At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.”[/pullquote]

 

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People came together in unprecedented numbers and made themselves visible! Outside our normal paths, many around the world were out, demanding research funding and health care that matches the level of burden this illness causes. They were communicating with the public, sometimes even government officials and journalists, and some even had meetings with members of Congress in the US. This is a very big deal for ME/CFS– we made a statement to the outside world, and maybe even surprised ourselves –  there were demonstrations in twelve locations! Check out the image gallery and see Jennifer Brea’s impassioned speech in Washington DC.

Millions Missing demonstration in Washington, DC. (Photo by Mary F. Calvert)
Millions Missing demonstration in Washington, DC. (Photo by Mary F. Calvert)

Millions are missing being able to protest in person. Yet patients sent their shoes in their place: rows and rows of empty shoes were a powerful silent message from these missing people, missing out on life. Online, people were making a mark too, setting social media alight and trending the #MillionsMissing hashtag with multitudes of posts of images showing that they are missing from life!

 

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It may have proved hard to hold back tears seeing people gathered together in public, and we appreciated so much the live feeds, which gave patients in their homes and their beds a window on demonstrations around the world. People with ME/CFS, their caregivers, families and friends were making a noise – being strong and confident!

Ian Lipkin, director of the Columbia University Center for Infection and Immunity has reiterated that you have to apply pressure and talk to people in congress, previously he said:

“I’ve been involved with a number of organisations that have been successful in promoting research. The most successful, of course, was the HIV AIDS community and thereafter the autism community….
There is no question but that your political leadership will respond to pressure. So this may not be very popular things to say with everyone. At the NIH we like to focus on specific science and applied science without talking about specific diseases, but the fact remains that if you say there is a priority then people will work in that area.

So I would encourage you to try to motivate your colleagues, people with this disease or related diseases and their families and loved ones to request additional support in these areas. This is what happened with autism and it made a huge difference in the level of investment at the National Institutes of Health (NIH) and even in the Department of Defense.”

Lipkin added “Again this is very difficult for people who have a chronic illness that is debilitating. It’s very difficult to be aggressive in pursuing that sort of support, but it’s really what you can do.” This Millions Missing campaign is making this happen.

In the US, this approach has delivered more research funding for disorders like Alzheimer’s, Multiple Sclerosis and Autism. Together we have begun to organise on a larger scale, and this truly is a growing movement, as the #MEAction slogan says: we will become the strength of those numbers. The #MEAction platform has poured petrol on coals, effectively bringing many people together and providing a foundation for action. There are many different ways to get involved with #MEAction – get connected in any way that works for you.

Stanford Professor Ron Davis was out demonstrating in San Francisco. In this must-see interview he talks about the situation for ME/CFS, and also about his son, Whitney, who suffers a severe form of this illness. He reveals preliminary findings in his research on ME/CFS using metabolomics. He explains the “whole cycle for generating energy is off” and later, says “you can’t really metabolize the glucose properly – they can-not metabolize fat properly” and “what we really need is research funding for lots of investigators, and we really need NIH to step up to the plate to take responsibility for this problem”.

Our time is now!

~ The Microbe Discovery Project team

Images courtesy of #MEAction