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M.E Awareness Month 2019

Get involved in M.E. Awareness Month 2019

Throughout May: we will be asking professionals, planners and policy-makers: Are you missing M.E.?

Many children and adults with M.E. tell us they feel excluded, and left behind. Did you struggle to find a doctor in your local area who knew about and understood your condition? Were your teachers unwilling to make practical adjustments at school to support your education? Was the process to accessing social care too complicated for you to get the support you needed?

Throughout M.E. Awareness Month, we are targeting the professionals who make decisions that affect your life, and asking them not to miss supporting their students, patients and clients with this complex condition.

So far, we have shared a guest blog on The Key, targeting half the schools in the UK, and our Head of Children and Young People's Services, Mary-Jane Willows, highlighted the issues facing parents falsely accused of exaggerating or even inventing their child's M.E. on BBC Five Live Investigates. Our Head of Communications and Engagement, Clare Ogden, spoke on BBC Radio Wales, along with Alana, one of the parents we are currently supporting; and BBC Radio Jersey (3h 11m in) You can also read articles we've contributed to in the Independent, Vice and UNILAD.

We are also:

Want to help us do this? There are many ways that you can help and get involved! By doing so, we may potentially use your submission when informing and contacting the people who have an impact on your life.


Here is how you can take part

May is #NationalShareYourStory month and we want to hear yours! Personal stories are the most effective way to raise awareness for M.E. Throughout the month you can do this in a number of ways:

Get involved on social media!

Like, share and reply to our stuff. The more people who do this, the bigger the impact that our awareness raising posts will have. We will be campaigning on Twitter, Facebook and our newly launched Instagram!

We will be using the following hashtags throughout the month: #AreYouMissingME #ISeeYou

Write a blog

Blogs can vary in size from anything between 100 to 800 words. Talk about yourself, explain what it’s like to live with M.E. and be yourself! Don’t forget to end your blog by asking professionals and decision makers: Are you missing M.E.? There are so many topics that you can talk about that relate to our campaign! Let us know that you’ve done this by tagging us on social media.

Film a video

Filming a video is easy – all you need is a phone, yourself and your experiences. It doesn’t need to be very long (one – three minutes)! Don’t forget to end your video with the ask – Are you missing M.E.? We have a guide to filming videos, which includes some questions that you might like to answer in your video. You can download this free.

Have a conversation

The best way to raise awareness is by having a chat with the people around you. This month have a conversation with just one person who doesn’t understand M.E. Is there a friend that doesn’t really get your condition? Would your head teacher be willing to have a meeting so that they could better understand what they could do to help you? Are there members of your family who still don’t get it? You can also download our posters, information and leaflets to support you in doing this.

Raise some money or hold an event

You can make a difference this month by supporting our charity and raise awareness for M.E./CFS. There are many ways that you can do this. Find out more.

Get involved in our events

We have a number of different events that you can get involved with. That may be through attending or by asking the professionals who affect your lives to attend. You can read more about these in our news article.

Complete our survey

We are following-up our last major survey in 2014 by looking, five years on, at health, welfare, employment and education for children, young people and adults with M.E. We will use what you tell us to:

  • campaign more effectively for improved services and support
  • show NICE your experiences of treatments recommended in its guideline for M.E./CFS, now under review
  • shape Action for M.E.’s work over the next few years.

Share your experiences in our Big Survey now.