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Project information

Stop M.E. stealing lives

M.E. is a life-stealer, but the right support at the right time can be life-changing. Action for M.E. is here for children and adults with M.E. when they need it most. Every donation helps us reach more people, offer more support and fund more research. Double your donation, double the impact!

December 2018 - November 2019

Charity information: Action for ME

Action for ME logo
  • Need

    Need

    ‘I felt like we had just been abandoned and left to get on with it by everyone. We were struggling to cope.’

    M.E. can affect anyone at any time.

    Of the 250,000 young people and adults in the UK with M.E., one in four experience pain and other symptoms so severe that they spend their lives in darkened rooms and often cannot be touched or hugged by a loved one. There's no cure and very little understanding towards treatment. GPs tell us that it’s the most challenging illness they deal with.

    Solution

    "I contacted Action for M.E. and was blown away by the support I was given."

    We provide vital information and advice by phone, online, and in print connecting people to the services they need; a ‘lifeline’ for those who have exhausted all other avenues seeking help. People with M.E. need better diagnosis and treatment but research is severely underfunded. We will bring more people and more money into the field so that M.E. can no longer be ignored.

    Together, we can stop M.E. stealing lives.

  • Aims

    Aim 1

    Provide targeted information and support to improve the lives of people with M.E.


    Activities

    » Extend the reach of our Information and Support Service responding to young people and adults struggling to find the practical help they need
    » Offer wide range of M.E.-friendly resources online/in print to help children, young people and adults make informed decisions that work for them
    » Support parents to find reliable information to help them access the most appropriate healthcare and educational support for their child

    What success will look like

    With your support, we can ensure an extra 2,300 young people and adults with M.E. and their families will have received vital information and support this year


    Aim 2

    Reduce the isolation experienced by children, young people and adults with M.E.


    Activities

    » Provide online peer support forums so people with M.E. can build friendships and share knowledge with others facing similar challenges
    » Our Birthday/Christmas card scheme ensures children with M.E. who are too ill to attend school feel remembered and celebrated
    » Provide a range of volunteering opportunities that children, young people and adults with M.E. can use to develop existing skills and gain new ones

    What success will look like

    Young people and adults will have formed meaningful relationships with peers and gained new skills, vital to those whose symptoms prevent them from working or going to school


    Aim 3

    Invest time and money in M.E. research and inspire researchers to tackle the puzzle of M.E.


    Activities

    » Play a leading role in driving collaborations to increase investment and research working closely with the UK CFS/M.E. Research Collaborative (CMRC)
    » Invest in at least one three-year postdoctoral or PhD studentship for projects focused on biomedical research
    » Support talented researchers to build an independent research career and increase skills and expertise through Clare Francis Fellowship

    What success will look like

    80 researchers will attend the annual science conference we organise on behalf of CMRC and report increased knowledge, opportunities for collaboration and promising new research


  • Impact

    Impact

    - We hope to improve treatments and diagnosis while working toward a greater understanding and ultimately a cure by bringing more researchers and more collaboration into the field.
    - We will provide reliable information, increase access services and empower people with M.E. to regain some control over their lives
    - The right support at the right time can make a huge difference. Compared to the same period over the last 12 months we have seen a 71% increase in first-time visitors to the website.

    Risk

    It can be challenging to reach people isolated with a chronic illness, struggling with symptoms that prevent them accessing available support; this is exacerbated by the fact that professionals working with them don't always know where to signpost for information and advice. By consulting with people living with M.E. to ensure we're effectively promoting our services to the children, young people and adults that need them most, we can improve even more lives and reduce even more isolation.

    Reporting

    Donors will receive:
    • stories, statistics and impact reports via letter, email and verbally, according to their preference
    • updates via our website, e-newsletter, Twitter and Facebook

  • Budget

    Budget - Project Cost: £150,000

    Loading graph....
      Amount Heading Description
      £54,000 Children's Services Peer-support and volunteer programme, telephone helplines, resources, website
      £66,000 Services for adults Telephone helplines, website, online forums, resources
      £30,000 Research Supporting researchers and research activity, driving collaborations
  • Background

    Location

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

    Beneficiaries

    -Young people and adults who have a recently confirmed or suspected diagnosis of M.E.
    -Young people and adults living with M.E. and their carers
    -Children and young people with M.E. who are missing school because of illness
    -Those severely affected by M.E. around one in four, who are house or bedbound
    -Friends and family of people with M.E.
    -GPs, teachers and other professionals working with people with M.E.
    -New or established researchers looking to enter into the field of M.E. researchW

  • Why Us?

    Why Us?

    Action for M.E. is led by the voices and experiences of children, young people and adults with M.E. Our experienced, committed team, supported by a wide network of volunteers, works in partnership with individuals and organisations who share our values. This collaborative approach ensures we maximise the value of every pound donated, so we can achieve our ambitious aims to improve lives, reduce isolation, and bring more people and more money into the field to accelerate M.E. research.

    Read more about the Charity running this project.

    People

    Imogen Ward

    Part of our team offering information, support and welfare advice, Imogen is often the first point of call for people seeking help by phone/email

    Mary-Jane Willows

    Head of Children’s services, Mary-Jane has spent the past 20 years ensuring that children with M.E. and their families get the best possible support

    Sonya Chowdhury

    Our CEO, and co-founder of the UK CFS/ME Research Collaborative, builds relationships at national and international level to strengthen collaboration

Laura is the carer of her daughter who was diagnosed with M.E. when she was eight.

“I felt like we'd been abandoned by everyone, we were struggling to cope. At this incredibly difficult time I got in touch with Action for M.E. The information they provide is wonderful and they validate everything you're experiencing. Without their support I honestly don’t know where I would be."

Mandy, who has M.E.