My outreach to people who have ME: M.E. Awareness Month is here!

On the 12 May the first ever World M.E. Day will be held – a day to give people with M.E. a voice to share their experiences and a day for organisations like Action for M.E. to highlight the woeful lack of investment in M.E. research across the globe.

I am extremely proud to be chairing the World M.E. Alliance and for Action for M.E. to be a World M.E. Day partner. By collaborating globally in this way we hope to unify efforts to raise awareness and campaign together for M.E. We will step closer to our goal of a world without M.E. through collective action.

I want to take this opportunity to say thank you for your continued support - without which we would not be able to invest in vital services for people with M.E. and research programmes to accelerate a breakthrough.

Sonya Chowdhury, Chief Executive, Action for M.E.

Chair, International Alliance for M.E.

This M.E. Awareness Month we launch Action for M.E.’s new strategy ‘Shaping our Future Together’ and we are calling for a National Strategy for M.E. led by the U.K. Government with a clear implementation plan with significant investment. Action for M.E. and many volunteers from the M.E. community work tirelessly behind the scenes to advocate for people with M.E. at all levels and we hope that we will soon see the long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E. We will not stop until this happens.

The theme for this year’s World ME Day is #LearnFromME – a campaign that will work to bring the knowledge people with M.E. and health professionals working in this field have to the wider world. It is only through research, by choosing to #LearnFromME, that we can find treatments and hopefully one day cure this disease and related illnesses like Long Covid.

There are lots of simple ways that people can be a part of World ME Day on our website.

Walk with M.E. is back and every penny you raise will be doubled!

As demand for our services continues to increase we depend more than ever on the funds generated by amazing fundraisers up and down the country taking part in our events.

Walk with M.E. is a sponsored walk with a twist – a team event that can be done over days, weeks or even months!

Between 31 May to 7 September you can bring together your Walk with M.E. team to count one million collective sponsored steps over 100 days, whilst completing fun competitions and raising funds to support people of all ages living with M.E.

We are delighted to be able to match any funds raised thanks to a generous family trust.

Since 2018, Walk with M.E. has raised over £25,000 - can you help us make this year our best yet? To find out more about Walk with M.E., including how to sign up, visit our website.

Blue Sunday, the Tea Party for M.E.

On Sunday 15 May, wear something blue, dig out your best cups, buy or bake your favourite cake and ask friends and family to enjoy a Blue Sunday Tea Party to raise money for Action for M.E.

Champion fundraiser Anna Redshaw created her annual tea party in 2013 and it has become a date that is looked forward to each year by people with M.E. and their families, friends and carers.

Blue Sunday acts not only as a fundraising event for M.E. charities but also as a way to raise awareness and break the isolation so often experienced by people with M.E.

After an amazing year in 2021, raising over £20,000 for M.E. charities across the world, we are delighted that Anna has chosen to fundraise for Action for M.E. again during Blue Sunday and we would like to invite as many people as possible to take part. Thank you Anna!

To find out how to hold your own tea party this Blue Sunday you can visit our website.

Severe M.E./CFS: A Guide to Living

Around one in four people with M.E. can become severely affected by the condition. They are often unable to leave the house or their bed, and accessing appropriate care and support can be a challenge.

First published in 2010, this invaluable book was written by the late Emily Collingridge, a patient with more than 12 years’ experience of severe M.E., in consultation with more than 30 patients, carers, friends, relatives and health professionals.

Over the past few months, Action for M.E. has been honoured to work with Emily’s mother, Jane, and her friends, Naomi and Victoria, to update Severe ME/CFS: A Guide to Living in line with the 2021 NICE guideline for M.E. and revised information about welfare benefits. Jane is also responsible for the www.severeme.info website while Naomi and Victoria manage the guide’s Facebook page.

Read more about Emily or order the book on our website.

Radio 4's The Listening Project

On Sunday 17 April, Radio 4’s ‘The Listening Project’ put the spotlight on the M.E. community. The insightful discussion featured Jay, who was diagnosed with M.E. in the 1980s, and Joanna, who has been diagnosed with Long Covid.

The conversation explored some of the challenges both Jay and Joanna face living with their conditions. They touched on their experiences with healthcare professionals, the impact their condition has on their day-to-day life and their frustration at the fact that traditional medicine is unable to provide them with any answers.

The episode is available to download now.