APPG Report: Inform your MP about the key issues relating to ME/CFS!

Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report – Rethinking ME – and this highlighted vital recommendations to help people with ME receive good quality health and social care. These included the implementation of the 2021 NICE Clinical Guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 

Members of the APPG on ME, the former Health Secretary Sajid Javid, and Nicki Strong (Trustee) of the ME Association attended the report’s launch at the Houses of Parliament in May. The ME Association understands the importance of this report and we believe it will help to shape the future for people with ME and their families.  

Rethinking ME is a comprehensive document that can be used to increase awareness and understanding of this devastating condition. People with ME, local support groups and healthcare professionals may wish to use copies of the report for this purpose. Please see the suggestions below and consider how you might help to bring about positive change:

1. Send the APPG Report to your MP with the accompanying letter (below) and ask them to join the next APPG meeting.
2. Ask your local support group to request copies and use them at awareness events. 
3. Share this blog on social media with your networks to reach a wider audience, and look out for the graphics promoting the report that we will be publishing.
4. If you’re a healthcare professional, please take time to share this report with your colleagues.

Download the report

You can download the whole report from the button below

FULL REPORT

 We sincerely hope that by sharing this report it will make a difference to the lives of people with ME, their families, and carers.  

Find your MP

If you need to find your local MP for the template letter then click the button below

Download Template Letter

You can download a Word file with the template letter to use to send to your MP.

Template letter

The text below can be copied and pasted into an email or printed and sent as a letter in the post with a hard copy of the report (if you choose to send one).

                                                                                                                         [Name] 
                                                                                                                         [Address] 
                                                                                                                         [Date] 
 
RE: All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME)

Dear [MP’s Name] 

Last year, the All-Party Parliamentary Group (APPG) on ME launched an important report – Rethinking ME – and this highlighted vital recommendations to help people with ME receive good quality health and social care.  

The ME Association helped to produce this document and endorses its recommendations. These include implementing the 2021 NICE guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 

[Option 1 – Letter: [Please find a hard copy of this comprehensive report enclosed/Please download a copy of this comprehensive report by clicking the link below]. I sincerely hope as one of your constituents [with ME/CFS/family member/carer for someone with ME/CFS] you will take time to read and digest the information.

[Option 2 – Email: Please download a copy of this comprehensive report by clicking the link below. I sincerely hope as one of your constituents [with ME/CFS/family member/carer for someone with ME/CFS] you will take time to read and digest the information. 

• Link: https://appgme.co.uk/publications/

You may also be aware that the former Health Secretary, Sajid Javid made a commitment to people with ME/CFS and since then stakeholders have been meeting with the Department of Health and Social care to create a Delivery Plan on ME/CFS that we hope will be published later this year.

Myalgic Encephalomyelitis is a complex multi-system disease that is classified by the World Health Organisation (ICD-11) as a Post-Viral Fatigue Syndrome (8E-49) and defined as a disorder of the nervous system ( i.e. neurological). Since the emergence of Long Covid, many clinicians and researchers have highlighted the similarities to ME and this has sparked a renewed interest into better understanding and treating these medical conditions.  

Please can I ask you to consider the report and its recommendations and join the next meeting of the APPG on ME. Carol Monaghan MP chairs these meetings and can be contacted by email:  carol.monaghan.mp@parliament.uk 

This will demonstrate to all your constituents who have ME that you are interested in their struggles and wish to support measures that will improve their situation. 

Yours Sincerely 
 
[Name] 
[Email]