UK All Party Parliamentary Group being reactivated - 2020

[Trish]

Interesting to see if this iteration of the APPG are more effective e.g. by lobbying for Simon Pointing's GWAS application.

I assume you mean Chris Ponting. I doubt there is any point the APPG lobbying funding bodies like the MRC to support particular research projects - the MRC has to go through its professional application and review process, not be directed by politicians, I think.

 

[Cinders66]

I have negative memories of the previous APPG on ME. I recall asking them to request the Government Research laboratories [https://www.fera.co.uk/] review proteomics studies etc. to see if they could develop biomarkers [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044169/]. I was told, by the the APPG Secretariate (Action for ME) that requesting a review of research was outside the APPG's remit.

Interesting to see if this iteration of the APPG are more effective e.g. by lobbying for Simon Pointing's GWAS application.

Does anyone know what their remit is/powers are - aside from existing?

@Simon M @Michiel Tack @Giada Da Ros @EspeMor

From what I’ve seen in other areas they can do inquiries and the autism one was pretty important in getting a national strategy for autism set up. Eg carol mongahon is on terminal illness appg who have publishedhttps://www.mariecurie.org.uk/policy/appg-for-terminal-illness



Inquiry into legal definition of terminal illness
The APPG for Terminal Illness has written a report following its inquiry on the impact of the legal definition of terminal illness on access to benefits for people living with terminal conditions.

Published in July 2019, the report contains the findings from this inquiry and gives recommendations to policy makers on ways to improve the legal definition and guidance to healthcare professionals.

https://www.mssociety.org.uk/get-involved/campaign-with-us/our-work-in-government
All-Party Parliamentary Group for Multiple Sclerosis (Westminster)

We work with a cross-party group of Parliamentarians who are committed to tackling issues that affect people with MS: the All-Party Parliamentary Group for Multiple Sclerosis (APPG). The group is made up of MPs and peers from all parties who help to make sure MS issues are high on the government’s agenda.

Simon Hoare, MP for North Dorset, is Chair of the Group and has a keen interest in the welfare and healthcare issues affecting people with MS. Lord Dubs, Lord Monks, Chris Law MP and Karen Lee MP are all Vice–Chairs of the Group.

The focus for the APPG for MS most recently has been to campaign to ensure access to ocrelizumab - the first treatment for early primary progressive MS. We'll be supporting the Group to re-form after the 2019 General Election.
The MS society

 

[FMMM1]

I assume you mean Chris Ponting. I doubt there is any point the APPG lobbying funding bodies like the MRC to support particular research projects - the MRC has to go through its professional application and review process, not be directed by politicians, I think.

Reasonable, i.e. as you highlight the MRC is an independent decision maker; therefore, the APPG cannot influence it directly. However, could the APPG lobby the Government to fund biomedical research e.g. by highlighting that GWAS studies have been useful in other diseases i.e. where a hypothesis driven approach has failed (one example is Alzheimer's)?

I'm a bit concerned that this APPG, like the previous one, in effect becomes a vehicle to complain - without any meaningful progress in terms of biomedical research, or healthcare (the last APPG gave us graded exercise therapy), or social security support.

This (new APPG) looks like it may be a useful vehicle; however, we need to be a careful --- forming groups is one thing, making progress re biomedical research and how people with ME are treated is another!

Is the APPG a potential route to challenging the position of people regarding access to social security benefits?

 

[Andy]

Discussion of the activities of the new APPG on this thread https://www.s4me.info/threads/uk-all-party-parliamentary-group-appg-2020-news.16996/

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

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

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

We’d also like to thank all 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.

The AGM established the topics that the APPG on ME will cover, including:

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

https://www.meaction.net/2020/02/19/next-steps-for-the-appg-on-me-in-the-uk/