How You Can Help The Millions Missing Worldwide

Photo of thousands of empty shoes filling a town square, foreground text says ME Awareness, How you can help the Millions Missing

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. 

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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.

Raising Awareness Of ME - Not Only In May

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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.

Practical Ways You Can Help People With ME

  • Learn More About The Illness On Your Own

  • Raise Awareness & Funding For ME Research

    • 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
    • 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
    • Display a poster 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
    • Post information about ME and the awareness events on social media using the hashtags: #MEcfs #MillionsMissing #CanYouSeeMEnow
  • Get Community Leaders, Decision Makers & Media Involved

    • Speak to your local MP about joining MAIMES (UK)
    • Speak to 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
    • Deliver information leaflets to your mayor, doctor's surgery, pharmacy and church
    • Send any of the above mentioned a copy of Unrest and invite them to awareness events

Go Blue For ME

The official colour to represent ME/cfs is Blue. So awareness ribbons, balloons, your clothes, hair and accessories and even your cupcake icing can all be blue at the ME awareness events.

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 famous buildings and structures lit up with blue, purple and green lights to show support for the three illnesses that share not only the same awareness day, but also many of the same symptoms.

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 and 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. Organise and 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)
  • Blue Sunday - an annual tea party for ME awareness (UK based, but can be attended virtually from home)
  • Solve ME initiative - Focused on Washington DC, meeting congress leaders, Unrest screenings, etc

If you are interested in hosting an event, some of these organisations have leaflets, posters and other awareness materials you could use to help the cause. So do visit their pages and see what is available to you.

One of my favourite websites for ME information and awareness materials is M.E. Support. I know I mentioned them earlier, but they have loads of publicity resources available which would be great if you're planning an event!

MillionsMissing from life due to ME/cfs

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 is now a virtual meet-up online!

Visit the May 12th website for a list of ME/cfs organisations from around the globe.

Patients can also take part in the #MeAndMyME Photo A Day challenge and share your ME/cfs journey.

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!

It would be a wonderful gift to any person with ME if you were able to support them financially. Every little bit helps!

Thank You!

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!

Thousands of empty shoes fill the town square, foreground text says How you can help the Millions Missing.

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music4me cd

Music 4 ME CD

Another great way to support people with ME financially is through Music 4 M.E. It is an Album of original songs and poetry composed and performed by people with M.E and their Carers about their experience of living with ME.

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

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Share this post:
  • Ritu Bhathal says:

    Having lost a family member to ME I’m fully behind trying get this condition more known about. An ex colleague was also diagnosed a couple of years ago…

  • Brenda says:

    This was great. I had no idea and will be sharing this post. Speak for those who can’t. Thank you.

  • Sonia Boal says:

    Sharing this on all the platforms I’m active on

  • An Historian says:

    I have taken part in this event before, in honour of my grandmother who was houseridden with MS (aside from when she was taken to the hospital for dialysis). It’s so important to recognise those, and those who support them!!

  • arv says:

    Thanks for spreading this information. I will share this post to reach out more people!

  • Emma (Not Just Tired) says:

    Great post Char, with excellent information and resources for how to raise awareness of ME.

    • Chronically Hopeful says:

      Thanks, Emma. I hope it will help people see there are easy ways to help out – we can use all the help we can get!!

  • Great post and more timely than I’ve managed. 😉
    Would it be all right if I reposted it during this upcoming week? Of course, you would get full credit again.

  • Lorelle says:

    Awareness is so important and understanding the issues as well. Thanks for the info.

    • Chronically Hopeful says:

      So true! Awareness is key to changing hearts and minds regarding this very misunderstood illness. Thanks for your support.

  • Ellen says:

    Good luck with raising awareness you are doing a good job.

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