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May is M.E. Awareness Month: get involved

May 02, 2017

We know that people with M.E. score lower on health-related quality of life tests than most other chronic conditions. One in four is house or bedbound, unable to care for themselves or live independently. Yet people with M.E. face ignorance, injustice and neglect at every level.

Next week is M.E. Awareness Week, and throughout the week we will be raising awareness and understanding of M.E., working with children, families and adults affected by M.E., and the professionals that support them.

We will be sharing the stories and experiences of people with M.E. online and in the press, raising the profile of the illness and making its impact more visible.

We will be offering resources you can send to your local surgery, school and parliamentary candidate to ask them to show that M.E. matters to them.

We will be reaching out to primary care professionals to help them better understand M.E., and say a huge thank you to everyone that has encouraged their GP to take part in our educational Webinar for GPs, which is being held on Thursday, with further educational webinars set to take place in the future. In response to the growing need for community pharmacists to take a greater role in the delivery of primary care for people with long-term conditions, we will also launch a brilliant new resource for pharmacists.

We have already been working with journalists with the intention of highlighting how many families of children with M.E. face false accusations of neglect, abuse or fabricated illness. We know that this arises as a result of ignorance about the impact of the condition, and we will be working to address this.

Sharing experiences and evidence gathered by our Children’s Services Team’s survey of families affected by M.E., we will ask teachers, social workers and policy decision-makers what they are doing to recognise and meet the complex needs of children and families with M.E.

Based on evidence gathered from the services themselves, and the experiences of the people with M.E. that use them, we will publish a report on healthcare services available for people with M.E. Following the general election in June, we will use this to ask MPs, NHS commissioners and primary care professionals what they are doing to ensure that appropriate, patient-led healthcare can be accessed by everyone with M.E.

Want to get involved? You can change attitudes and inspire action to increase awareness and understanding of M.E. by: