The APPG Report “Rethinking ME” will be launched at an auspicious event at the House of Commons on May 25th. It will cover key issues of concern – research, management, NHS services, benefits, children, severe ME/CFS etc. – and will make a number of recommendations concerning action that needs to be taken to improve the lives of people with this condition.
“At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”
Carol Monaghan, MP, Chair of the APPG on ME
Invitations have already been sent to all MPs and members of the House of Lords, but you can also remind your MP about the importance of this event, by sending an email using the template below (which can be suitably amended or added to if you wish to do so).
You may want to add a short note relating to a personal, local, or national issue of concern. This might include a diagnostic delay, a DWP benefits problem, issues faced by children, or by people severely or very severely affected, lack of a local ME/CFS specialist service, or the need for biomedical research – all of which are covered in the APPG Report.
Template Email
Subject heading:
Please attend this important APPG on ME event with Sajid Javid
Dear [Name of MP],
As one of your constituents who [insert as appropriate: has ME/CFS or cares for a person with ME/CFS or is a parent of a child with ME/CFS], I hope you will be able to attend an event that will launch of an important report from the APPG on ME.
I understand you have already had an invitation from APPG Chair, Carol Monaghan MP. The event will take place at 3.00pm to 4.30pm, on Wednesday 25 May.
The report is based on evidence from researchers, clinicians, charities, and people living with and caring for those affected by ME/CFS. It is titled “Rethinking ME” and covers key issues of concern to people with this neurological condition, while making a number of important recommendations.
We hope that the Secretary of State for Health and Social Care, Sajid Javid, will deliver a speech at the meeting or a representative. This follows the important statement he made last week:
“I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. In particular, we are engaging with the Scottish Government to explore areas of potential shared interest and learning, especially in terms of research into ME/CFS.
“This will build on the recommendations of the Priority Setting Partnership, the recently updated guideline for ME/CFS from the National Institute for Health and Care Excellence, and the comprehensive work of the All-Party Parliamentary Group on Myalgic Encephalomyelitis to date.
“At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, that we must trust and listen to those with lived experience of ME/CFS.”
Extracts
I hope you will be able to attend this event and are able to take an interest in a devastating disease that is affecting 250,000 people in the UK.
With kind regards
[Your name]
[Your address]