Question

As we are heading for a general election later this year, I thought it would be useful to see if I could arrange a face to face meeting with my MP. To my surprise I have been given 15 minutes at his local ‘surgery’ in a few weeks time. What are the most important issues that I need to make my MP aware of?

Answer

First of all well done in setting up a meeting and I hope that other people will do so as well over the coming months – especially if you live in a marginal constituency where every vote counts. When it comes to points to raise, and time will be limited, these are my suggestions:

1: Ask your MP to join the All Party Parliamentary Group (APPG) on ME at Westminster to check to see if he/she is not already a member. The Chair is Carol Monaghan MP. And check to see that he/she is aware of the APPG report on key issues facing people with ME/CFS.

N.B. As of Dec 2024, Jo Platt (jo.platt.mp@parliament.uk) is the chair of both the APPG on ME and also for the APPG on Long Covid

2. If there is a local issue relating to any form of non-implementation of recommendations in the new NICE guideline at your NHS specialist referral service (if there is one), this should definitely be raised. If there isn’t a local ME/CFS referral service this would be a high priority item to raise.

APPG on ME website: appgme.co.uk

3: The DHSC Delivery Plan, which is covering:

• the need to improve medical education on ME/CFS
• implementation of the NICE guideline recommendations
• the very poor care given to some people with severe and very severe ME/CFS
• the need to improve research capacity andfunding for ME/CFS by bringing in new researchers

4: Most biomedical research is still being funded by the ME/CFS charity sector – for example it costs the MEA around £80,000 per annum to fund all the basic running costs at the ME Biobank. So we need ring-fenced funding for ME/CFS from the government funding research bodies such as the Medical Research Council along with funding to set up at least one Centre of Excellence for research into ME/CFS.

5: People with ME/CFS are very worried about the proposed changes to the Work Capability Assessment and Personal Independence Payment and whether these are going to make it even more difficult for people with fluctuating medical conditions to claim ESA and PIP.

MEA submission to the consultation process: Work capability consultation