FAQs

Myalgic Encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS), is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients causing significant functional impairment, ill-health and disability.

The physical symptoms associated with ME include activity-induced muscle fatigue, pain, cognitive dysfunction, problems with the regulation of pulse and blood pressure (dysautonomia), the inability to sustain physical and mental activity, and post-exertional malaise. These symptoms are as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

All-Party Parliamentary Groups (APPGs) are informal, cross-party interest groups of MPs and Members of the House of Lords interested in a particular topic. They exist to bring together MPs and Peers from all parties to learn about and advocate around a specific issue. APPGs can’t make laws and aren’t funded by Parliament or Government, but they can present evidence to government and work to impact policy decisions. There are a huge number of APPGs covering hundreds of different topics.

The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament (MPs) and members of the House of Lords (Peers).

It seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.

The Group meets several times a year and uses each meeting to focus on a specific issue affecting people with ME. Sometimes experts are invited to give presentations on a specific topic, to improve the understanding and knowledge of the APPGs members. This helps members both to support individual constituents and to advocate for policy change in Parliament.

The APPG creates an important setting to show politicians the scale of challenges facing people with ME, and give space for discussions on how best this can be changed.

APPG meetings are held for Members of Parliament and the House of Lords to learn more about the issues facing people with ME. The Parliamentary Security Department has specified that APPG meetings must not be advertised to the public for security reasons. However, guests may be invited to speak or provide evidence to the APPG in order to provide the best information possible about ME to those in attendance. You can find more information on the relevant APPG rule here. Meeting minutes are required to be open to the public and will be posted to this website as soon as possible after meetings.

MPs work on issues that are important to their constituents. You can ask your MP to attend meetings of this APPG and even join the APPG as an officer.

• Click the button below to use a simple website to write to your MP
• Copy and paste the template email below, edit it and send it to your MP.

Subject: Attend APPG on ME meeting

Dear [MPs name],

I am writing as one of your constituents to ask that you attend the next meeting of the APPG on ME. The group is chaired by Carol Monaghan MP. Please contact her office for an invitation on carol.monaghan.mp@parliament.uk.

ME is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It is an often misunderstood condition that affects roughly 400 children and adults in our constituency.

The APPG on ME seeks to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.

This APPG is important to me because [explain why ME matters to you].

Kind regards

[Your name and full address]

Unfortunately not, parliamentary rules are very clear that MPs can only do work on personal issues for their own constituents. Our All-Party Parliamentary Group works on the broader issues around ME that affect many people.

You can get in touch with your own MP by looking up their contact details here. They can advise you on whether your issue is something they can help with.