You can write to your general election candidates with our template letter to make them aware of the issues facing people with ME/CFS. You can find a list of candidates for your constituency from the link below:
Template Letter
You can download a Word version of the letter which you can edit and send.
You can copy the text from the letter below and edit your name, address and other options to send to any parliamentary candidate in your constituency.
Dear XXXX
The state of the National Health Service is of major concern to myself and many of your potential constituents.
Option to add a short summary of your own situation
I have ME/CFS and……
Or
I am the parent/carer/relative of a person/child with ME/CFS and….
ME/CFS is very disabling neurological condition that affects at least 250,000 people in the UK, Many more people have developed ME/CFS during the past four years as a result of catching Covid 19.
People with ME/CFS have a number of key concerns:
1 The disparity of research funding into the cause and treatment of ME/CFS when compared to other long-term medical conditions.
2 Lack of medical education on ME/CFS. This means that many people experience a long delay in having their diagnosis confirmed and then receive inadequate or even harmful management advice.
3 Lack of specialist referral services in many parts of the UK. Even where a service exists the recommendations in the new NICE guideline on diagnosis and management may not be followed.
(Possibly add some information on the local situation regarding problems with a specialist referral service – or lack of a referral service.)
4 Lack of care and support for people with severe and very severe ME/CFS.
5 Problems with obtaining DWP benefits which could be made even more difficult as a result of the proposed reforms of PIP and the ESA Work Capability Assessment.
6 Refer to issues relating to education and inappropriate child care proceedings if you are a parent of a child with ME/CFS
These concerns are summarised in a report that was produced by the All Party Parliamentary Group (APPG) on ME and in the DHSC Interim Delivery Plan for ME/CFS that was set up in 2022 by The Rt Hon Sajid Javid MP when he was Secretary of State for Health.
The day before the election was called the APPG on ME held its first evidence gathering session in order to prepare a report on the care and management of people with severe and very severe ME.
I am therefore seeking confirmation that if elected you would be willing to:
(a) join the APPG on ME
(b) actively support the implementation of recommendations in the 2021 NICE guideline and the recommendations in the DHSC Delivery plan when this is published.
Optional addition: I would be happy to meet with you, or one of your aids, to talk about these concerns and the need for parliamentary action
I look forward to receiving your reply
Regards
Address
APPG Report on ME/CFS
DHSC Interim Delivery Plan