How You Can Help The Millions Missing Worldwide
Although May 12 is ME Awareness Day, a global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends, many patients are too ill to leave their beds and would be lost and hopeless if not for the able bodied supporters who take their places at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few healthy friends how they could practically help our cause. So in this post I will list some ideas and links to other initiatives that would greatly benefit from any support you can give.
This page will continue to be updated as new opportunities come to my attention.
Please get in touch if you have any ideas to add.
Practical Ways You Can Help People With ME
Learn More About The Illness On Your Own
• Read the International Consensus Criteria and share it online
• Explore Health Rising and ME Support
• Read content written by the ME community on: Instagram | Twitter | Facebook and this excellent piece called "This Could Happen To You".
Raise Awareness & Funding For ME Research
Go blue for ME: Turn your home, street or local square blue for ME during a busy period. Use blue lights, blue hair, blue balloons, put up posters, host a cake sale, hand out leaflets and spread the word
Complete a charity walk/run with friends or colleagues in aid of ME research
Create a poster or display in a public area (supermarket, hospital, doctors waiting room, library, sports club or lido, your lunch room or elevator at work, etc)
Write a blog post about ME or publish a guest post by a person with ME
Host a tea party or BBQ in your neighbourhood with Q&A afterwards, you could even include a screening of Unrest - it's available on Netflix worldwide
Interview a person with ME on your YouTube channel, podcast or radio show
Host a raffle prize draw at a local school where proceeds are donated to ME research. Prizes could include a gift basket, vouchers, or a weekend away in a donated accommodation.
Create a virtual campaign: post information about ME and the awareness events on social media using the hashtags: #pwME #MillionsMissing #CanYouSeeMEnow #EndMEcfs
Host a fundraiser:
• Use your skills and hobbies to raise funds for ME research by inviting people and charging an entry fee which will be donated to the organisation of your choice.
• Host an art exhibition where proceeds are donated to ME research
• Put on a theatrical or musical performance to shed light on life with ME
• Yarn bomb a public space to raise awareness, this will take time, so invite friends, family and local clubs or retirement homes to participate and donate pieces.
• Car or motorbike lovers can host a breakfast drive or vintage show
• Host a bake-off or cake sale, entry fees are donated or proceeds from cake sales donated
Get Community Leaders, Decision Makers & Media Involved
Speak to your MP about joining MAIMES (UK)
Speak to community leaders & service providers like local pastors, doctors surgeries, hairdressers or laundry services about making provisions to better serve people with ME in their community (taking into account their need of accessibility, quiet, less crowded areas, lying down, sensory overload, home visits, etc)
Invite media to the May 12 protests and demonstrations or any event you host
Curate info packs: deliver accurate and up to date information (like this Factsheet, this Clinical & Research Guide, this Primer For Medical Professionals, or this Leaflet for Churches) to your mayor, doctor's surgery, pharmacy, community centre and church.
Host a Q&A event for local leaders: include a screening of Unrest (now available on Netflix), allow time for questions and answers, and invite them to awareness events.
Go Blue For ME
The official colour to represent ME is Blue. So awareness ribbons, balloons, your clothes, hair, accessories and even your cupcake icing can all be blue at your ME awareness events. We even have a hashtag #GoBlue4ME! Use it online to find others who are raising awareness of ME and see what they've done.
Global ME Awareness Events In May
ME Awareness Week is the week (from Mon to Sunday) that includes May 12. It is celebrated globally with all sorts of events ranging from virtual protests by people confined to their beds, campaigning online, pyjama parties for those who are housebound, tea parties and charity walks.
There are the famous Millions Missing protests and the spectacular Light Up The Night events which see many buildings and structures around the world lit up with blue, purple and green lights to show support for the various illnesses that share not only the same awareness day, but also many of the same symptoms.
Every Bit Helps!
There are millions of us missing around the world from jobs we loved, our social circles, family holidays, and many of us will be missing from these awareness campaigns too - being too ill to take part.
Any help you can provide would be greatly appreciated, whether it's sending emails or making phone calls, getting posters printed or accompanying patients to events. Every bit helps!
ME Awareness Week Events
Click the links to go directly to the event's page to find out more:
Millions Missing Campaign - daytime protests attended by patients, carers and the empty shoes of those who are too ill to leave their homes. Takes place in many cities around the world. Join an event or organise your own!
Light Up The Night events - turning prominent buildings around the world blue, green and purple to raise awareness. Reach out to your local municipality to organise an event in your town!
The ME Association's events page has many events to choose from (mostly UK based, but some can be attended virtually via social media or duplicate it locally)
Blue Sunday - an annual tea party for ME awareness (UK based, but can be attended virtually from home or host your own locally!)
Where To Find Publicity Resources
If you are interested in hosting an event, some of the advocacy organisations have leaflets, posters, t-shirts, balloons, pins and other awareness materials you could use to help the cause. So do visit their pages and see what is available to you.
M.E. Support has great publicity resources available if you're planning an event.
The ME Association has lots of materials for anyone Going Blue For ME.
The ME Action Network has great resources available for the Millions Missing events.
Chronically Hopeful graphics: I have created many graphics you can share on social media or print out and display at events. See my Effects of ME posters, the Severe ME is... posters and the Personalised Millions Missing posters.
Set one of these images as your profile picture on Instagram, Facebook, Twitter, or WhatsApp to show support and help raise awareness:
I send out a WhatsApp blast to all my non-ME contacts each year, including some information about ME and our campaign as well as links to relevant charities and research and attach these images for them to use. They get to choose which one to use and on which accounts and the information I send can be forwarded if they get queries about their new profile picture.
It is such a blessing to open WhatsApp or any of my other social media apps and see these images of support pop up. I have been told by my contacts that they have been asked about it - so they do work!
Virtual Millions Missing Meet-up
For those who are housebound or bedridden and cannot make it to the various protests in cities around the world, there are now a virtual meet-ups online!
*I will share this year's link once it's been made available.
Where To Find International ME Organisations
Financial Support For ME Research
There are a number of research teams and charities working tirelessly to find answers, but in my opinion, the most exciting research is happening at Stanford with Dr Ron Davis and his team. Their research is giving the ME community so much hope! Dr Ron Davis' own son suffers from very severe ME.
It would be a wonderful gift to any person with ME if you were able to support them financially. Every little bit helps!
Learn more about The End ME/cfs Project by the Open Medicine Foundation.
Register with Team OMF to help support their efforts.
Any of the previously mentioned organisations also raise funding for advocacy efforts, supporting patients and scientific research. Supporting any of them would be a great gift.
I thank you for your interest in helping us raise awareness and funding for this very neglected condition. It means a lot that you would spend your time and energy on something like this on our behalf.
I know I speak for all people with ME when I say we are so very grateful for your support!
Raising Awareness Of ME - Not Only In May
Although we have a designated awareness week in May each year, these types of events can be organised for any time of the year. The more exposure we get, the better. We would love for you to be a part of this campaign.
Additional Awareness Info For Patients
• Patients can get their own personalised Millions Missing poster
If you know of any other events, charities or research projects not listed here or have any fun awareness and fundraising ideas, please leave a comment or contact me so I can add them to the list!
Header photo credit: Newsmaker, Australia 2016