MEAW21: ME Association Health & Social Care Awareness Campaign

Russell Fleming, Content Manager, ME Association 

The new NICE clinical guideline for ME/CFS will be published at the end of April or early in May. Hopefully, it will be in time for ME Awareness Week. 

The guideline committee – including Dr Charles Shepherd – are currently considering stakeholder feedback following release of the draft guideline in November last year. 

ME Awareness Week will run from Monday 10 – Sunday 16 May, and we want to feature ME/CFS patient experiences with health and social care to demonstrate recent good and bad practices. 

The new NICE guideline has the potential to bring positive change across NHS and social care services and we hope that people with ME/CFS will come to appreciate and witness the best practice guidelines in practice. 

We have lived with a poor clinical guideline since 2007 and this has had a knock-on effect on health and social care and in some instances underscored negative attitudes towards people with the condition.  

Many with ME/CFS have been discouraged from engaging with the NHS and for some this has meant no help or support for decades. 

We want to share your stories during ME Awareness Week. We’d like you to focus on a single good or bad experience that you have had in the last 2 years with the NHS and/or social care services, or you might tell us your reasons for choosing not to engage with the NHS. 

By drawing attention to your experiences, we hope to demonstrate just how far the new clinical guideline needs to go to change attitudes and approaches to ME/CFS in health and social care. 

How you can help 

We’d like you to focus on a single good or bad experience that you have had in the last 2 years with the NHS and/or social care services or explain why you have chosen not to engage with them. 

For example: 

• You might want to explain how your GP, specialist or social care provider has provided good support with regard to understanding ME/CFS and your individual needs. 
• You might have experienced distressful and inappropriate advice and a lack of support or care from a GP, specialist, or social care provider. 
• You might like to focus on accessibility, perhaps you do not have access to a local ME/CFS specialist service or found that appointments required too much travel or were too long or even inappropriate. 
• Alternatively, you might like to explain how your GP and/or specialist visits you at home or that your GP and/or local specialist service have gone out of their way to provide help and support.  
• You might also like to explain why you have not engaged with the NHS or applied for social care (we know that some of you choose not to do so because of the lack of understanding about ME/CFS and earlier bad experiences). 

Please send your stories via email to: Feedback@meassociation.org.uk We have extended the deadline to Monday 05 April at 5.00pm. 

You can submit more than one story, but each should be no more than 300 words. We will not publish your full identity when using your story, and similarly we will not identify the healthcare professional you might mention. 

If you could include one or more personal photographs it would help us promote your story on the website blog, social media, and in ME Essential magazine, although we can use library images if necessary. 

Thank you!