Statement: What’s next for the All-Party Parliamentary Group on ME? | 19 February 2020

February 19, 2020

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

This is a joint statement issued by #MEAction and The ME Association.

“We will be pressing for better treatment programmes for those living
with ME” Carol Monaghan, MP, Chair, APPG on M.E.

#MEAction and The ME Association are both delighted that Carol Monaghan (MP for Glasgow North-West) has re-established the new All-Party Parliamentary Group (APPG) on M.E.

This is a parliamentary initiative for which The ME Association will be providing secretariat support. The purpose of the APPG is to seek to improve health, social care, education and employment opportunities for M.E. sufferers and encourage biomedical research into the cause and treatment of M.E.

Ms. Monaghan has campaigned tirelessly on behalf of the ME community and has led several important debates that culminated last year with M.E. being discussed in the House of Commons. Her continued support is very much appreciated by all concerned.

We’d also like to thank the MPs who supported these debates and who attended the inaugural AGM of the new APPG on 14 January 2020, and all those in the patient community who encouraged their MPs to attend.

Key areas of concern

The AGM established the topics that the APPG on M.E. will cover, including:

  • Access to healthcare
  • Access to financial support and welfare benefits
  • Protection for children with M.E.
  • Biomedical research spending by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR)

These were agreed upon with the addition of the following:

  • Economic and societal impact of M.E. as a justification for additional spending (which was suggested by Stephen Metcalfe MP), and,
  • Medical diagnosis (which was suggested by Olivia Blake MP).

A further aim of the new APPG is to produce a key report on issues impacting M.E. sufferers.

#MEAction and The ME Association will continue to lobby parliament to encourage greater support for people with M.E. and we believe that the APPG on M.E. is one of the best ways to achieve this positive change.

Biomedical research

The next meeting of the APPG will be on Tuesday 3rd March, from 1 – 2 pm.

It will provide an opportunity for MPs to learn about issues and developments in biomedical research and funding through a series of short presentations and a Q&A discussion.

There will several specialist guest speakers who will discuss their research: Professor Julia Newton from Newcastle University, Professor Chris Ponting from the University of Edinburgh and a representative from the UK ME Biobank.

Please contact your MP

If you haven't been in touch with your MP about the APPG but would like to invite them to attend the meeting in March, you can find information on how to contact them (and an email template) here or here.

We would recommend that you raise issues with your own MPs in the first instance and encourage them to attend the APPG meetings where such concerns can be discussed. It might prove more effective if you consider contacting local support groups and make a joint approach to your MP.

We suggest you refer all MPs to Carol Monaghan’s office for more information and for the location of the upcoming meetings.

MPs who attended first meeting

Below is a list of the MPs that attended the first meeting in January 2020 as well as officer’s roles:

  • Carol Monaghan MP (Chair)
  • Sharon Hodgson MP (Co-Chair)
  • Stephen Metcalfe MP (Co-Chair)
  • Ben Lake MP (Vice Chair)
  • Hywel Williams MP (Secretary)
  • Olivia Blake MP (Treasurer)
  • Deidre Brock MP
  • Fiona Bruce MP
  • Wayne David MP
  • James Davies MP
  • Mary Glindon MP
  • Robert Goodwill MP
  • Margaret Greenwood MP
  • Dame Diana Johnson MP
  • Sally-Ann Hart MP
  • Kerry McCarthey MP
  • Navendu Mishra MP
  • Gavin Newlands MP
  • Jonathan Reynolds MP
  • Alex Sobel MP
  • James Sunderland MP
  • Stephen Timms MP
  • Michael Tomlinson MP
  • Liz Twist MP

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!

ME Association Registered Charity Number 801279

1 thought on “Statement: What’s next for the All-Party Parliamentary Group on ME? | 19 February 2020”

  1. Great to hear that the APPG on ME is up and kicking in the new parliament! Many thanks to Carol( and our own Dr.Shepherd) for ensuring that those who strut the corridors of power are kept aware of our plight.Ultimately they are the ones who hold the purse strings,and thus possess the power to further the cause of much needed biomedical research into ME. I emailed my MP,who sadly was unable to attend,and he assured me our struggle continues to enjoy his full support.
    We have now left the EU and therefore have no MEPs to lobby on our behalf.However,Iwas encouraged to hear recently that the EU based Committee on Petitions is preparing a resolution on ME,their first ever on this insidious condition. I feel that we must fight this battle on as many fronts as we are able to.I have many friends in Southern Ireland who have promised me they will continue to pressure their MEPs to support any moves to highlight the cause of ME sufferers.
    Once again I would like to express my heartfelt gratitude to Carol,and all the members of the APPG on ME,for their sterling efforts on our behalf.They give us all hope for the future. Ciaran

Comments are closed.

Shopping Basket