Participating Project

Project information

Action for M.E. - Stop M.E. stealing lives

“Action for M.E. was there for me when nobody else was.”
Help us be a lifeline for even more children and adults with M.E. who are desperate for answers. Together we can stop M.E. stealing lives.

December 2017 - November 2018

Charity information: Action for M.E.

Action for M.E. logo
  • Need

    Need

    “I want to play football with my mates. Most days I’m too ill to get out of bed.” (Timmy, 9 years old)

    Children like Timmy face symptoms that leave them in pain and struggling to function. M.E is the most common cause of long-term school absence and 1 in 4 of the 250,000 affected in the UK will be bedbound for years. This leaves many unable to access the support they desperately need. Widespread misunderstanding about the impact of M.E. only adds to their isolation.

    Solution

    Having access to trusted information about symptom management and specialist care, means that children, adults and families can begin taking their lives back. Often described as “a lifeline,” Action for M.E. shares key information, support and advice on all aspects of living with M.E. via phone, email, printed resources and our Online M.E. Centre (244,000 visits last year). We reduce isolation by connecting people with M.E. with each other through social media and our three peer-support forum.

  • Aims

    Aim 1

    Children with M.E. feel better supported and less isolated.

    Activities

    » Children with M.E. can build friendships with others facing the same daily challenges in our online peer support forum
    » Children with M.E. who are severely affected feel connected to a network of friends through a penpal scheme even if they are too ill to write back
    » Children who are too ill to attend school receive birthday and Christmas cards giving them something to look forward to on special occasions.

    Children with M.E. will build meaningful relationships with peers in a way that works for them and their families. We will collect feedback and to inform our reports to funders.


    Aim 2

    Children achieve their full potential, in spite of losing crucial years to M.E.

    Activities

    » Parents and children are supported by our knowledgeable team to access education in a way that also helps them manage M.E.
    » Parents can connect with each other and share advice and knowledge to encourage each other through tough times via our Parent Members Forum
    » Health, education and other professionals can access information and resources to help them support children and families affected by M.E. more effect

    Parents will better understand steps they need to take to ensure their child is able to manage their condition and access the education they are entitled to.


    Aim 3

    People with M.E. are able to adjust to the dramatic life changes caused by the illness

    Activities

    » People with M.E. will be better able to manage the stress and anxiety caused by symptoms through gaining practical advice from our staff team
    » People with M.E. will get the best out of their appointments with their GP by viewing our resources giving tips on how to use their time effectively
    » People with M.E. will have a better chance of staying in or finding work or leaving in the best way

    People with M.E. are able to access crucial information at the time they need it most. We will monitor the number of people accessing and using our services.


    Aim 4

    Adults with M.E. can connect with others who understand

    Activities

    » Adults with M.E. feel heard and understood when they call our telephone support lines
    » Adults with M.E. can share advice/support with from peers, in our forum, which is particularly helpful for those who cannot often get out of the house

    Adults with M.E. gain support and advice not only from our experienced staff team but also from others who are coping with the condition. We measure through online surveys.


    Aim 5

    Health and other professionals understand the wide range of ways M.E. affects children and adults

    Activities

    » We will gather the voice and experiences of M.E. through a variety of channels, including online surveys, focus groups and advisory panels
    » We will ensure that people with M.E. and their experiences are represented health, education and other professionals and policy makers

    Children and adults with M.E. are better supported by their GPs, their employers, their teachers and other professionals working with them.


  • Impact

    Impact

    Our work helps to dispel the stigma and ignorance around M.E. and ensure that children and adults with M.E. are not left alone to face the challenges this devastating illness creates. This project will enable children and adults with M.E. to access support, friendship and information which will empower them to better manage their own health. We aim to reach at least 20% more people with M.E. by 2021.

    Risk

    We are constantly working to reach as many children and adults with M.E. as possible. We will lower the risk of children and adults not being able to find us through online search optimisation, media/press campaigns and the continual growth of our networks of informed professionals.
    To ensure that our information is wants needed and wanted, we consult people with M.E. frequently, both formally through panels, surveys, advisory groups and networks and informally through conversation and online.

    Reporting

    Donors will receive:
    • stories, statistics and impact reports via letter, email and verbally, according to their preference
    • updates via twitter, Facebook and other social media

  • Budget

    Budget - Project Cost: £155,000

    Loading graph....
      Amount Heading Description
      £54,000 Children with M.E. Providing a range of support services for children with M.E. and their families
      £52,000 Telephone support Providing advice and support via telephone
      £24,000 Online M.E. Centre Funding for developing and maintaining our critical website
      £25,000 Understanding of ME Influencing with the voices and experiences of those with M.E.

    Current Funding / Pledges

    Source Amount
    Individual donor £5,000 Guaranteed
    Individual donor £3,000 Guaranteed
  • Background

    Location

    We are a national UK charity with a main office in Keynsham (just outside Bristol). We also have staff and volunteers based in Scotland, Milton Keynes and London. The majority of our work and support is offered by phone, post or online, ensuring easy access for everyone affected by M.E. wherever they are based in the UK.

    Beneficiaries

    - Children and adults who are newly diagnosed with M.E.
    - Children, young people and adults with M.E.
    - Children with M.E. who are missing school due to their symptoms
    - Those severely affected by M.E. (around 1 in 4), who are house or bedbound
    - Friends and family of people with M.E.
    - Teachers and professionals working with people with M.E.
    - GPs and healthcare professionals

  • Why Us?

    Why Us?

    We have a staff team with extensive experience working with and providing services for children and adults with M.E. and we are here when often no-one else is. We take action to end the ignorance, injustice and neglect experienced by people with M.E. We do this by offering services right now to improve the lives of people affected by M.E. while working to create a greater understanding of the illness so that children, young people and adults can access the care and support they need and deserve.

    Read more about the Charity running this project.

    People

    Imogen Ward

    Imogen has more than nine years’ experience of giving advice/support to people with M.E. Her extensive knowledge and experience is vital to our work.

    Clare Ogden

    Clare leads our communications, engaging with the press, public and policy makers to raise awareness and understanding of M.E.

    Mary-Jane Willows

    Mary-Jane runs our support services for children, with more than 15 years of experience improving the lives of children with M.E. and their families.

    Sonya Chowdhury

    With her extensive background in children’s services at Barnardo's, our highly-engaged and creative CEO Sonya will lead the project.