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All-Party Parliamentary Group on Myalgic Encephalomyelitis
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The '''All-Party Parliamentary Group on Myalgic Encephalomyelitis''' (APPG) is a British group of backbench members of parliament, from. all political parties and from Houses of Commons and Lords, who meet to discuss [[myalgic encephalomyelitis|ME]].<ref name=":0">{{Cite web | url = http://www.forward-me.org.uk/11th%20July%202017.htm | title = Minutes of the Meeting held at the House of Lords, Tuesday 11 July 2017, 2pm | last = Forward-ME| first = | author-link = Forward-ME | date = Jul 2017 | website = Forward-ME|archive-url=|archive-date=|url-status= | access-date = 2020-02-14}}</ref> We have minutes from the ME APPG dating from 2001, with references to the existence of an earlier APPG chaired by Tony Wright MP<ref>{{Cite web | url = http://www.appgme.org.uk/minutes/mintues.html | title = All-Party Parliamentary Group on ME - Welcome to APPG on M.E. | website = appgme.org.uk | access-date = 2021-09-04}}</ref>.. It ran for many years. [[Carol Monaghan]] MP revived the APPG on ME in February 2020; it had previously closed in 2017 due to lack of interest, “momentum” & the charities providing joint secretariat deciding that the time was better spent elsewhere“ .<ref name=":1">{{Cite web | url = https://www.meaction.net/2020/01/12/new-appg-on-me-for-the-uk-meeting/ | title = New APPG on ME for the UK - Meeting | last = #MEAction | first = | author-link = The MEAction Network | date = 2020-01-12 | website = #MEAction|language=en-US|archive-url=|archive-date=|url-status= | access-date = 2020-02-14}}</ref><ref>{{Cite web | url = https://meassociation.org.uk/2017/08/the-appg-on-m-e-comes-to-an-end-focus-of-lobbying-will-now-be-via-forward-me-group-22-august-2017/ | title = The APPG on M.E. comes to an end. Focus of lobbying will now be via Forward-ME Group {{!}} 22 August 2017 {{!}} The ME Association | date = 2017-08-22|language=en-GB | access-date = 2021-09-04}}</ref> ===APPG Focus=== The APPG for ME agreed to focus on the following key topics: * Access to healthcare * Access to [[Access to benefits|financial support and welfare benefits]] * Protection for [[pediatric myalgic encephalomyelitis/chronic fatigue syndrome|children with ME]] * [[Biomedical research]] spending by the [[Medical Research Council]] and the [[National Institute for Health Research]] * Economic and societal impact of ME as a justification for additional spending * Medical diagnosis In addition: * Producing a key report on issues impacting ME sufferers<ref name="Shepherd-19Feb20" /> === APPG members === The first meeting since the 2019 general election was held in February 2020, and arranged by [[Carol Monaghan]] MP.<ref name=":1" /> ==== Officer's Roles ==== * [[Carol Monaghan]], MP (SNP) - '''Chair''' * [[Sharon Hodgson]], MP (Labour, Washington and Sunderland West) - '''Co-Chair''' * [[Stephen Metcalfe]], MP (Conservative, South Basildon and East Thurrock) - '''Co-Chair''' * [[Ben Lake]], MP (Plaid Cymru, Ceredigion) - '''Vice Chair''' * [[Hywel Williams]], MP/AS (Plaid Cymru, Arfon) - '''Secretary''' * [[Olivia Blake]], MP (Labour, Sheffield Hallam) - '''Treasurer'''<ref name="Shepherd-19Feb20">{{Cite web | url = https://www.meassociation.org.uk/2020/02/statement-whats-next-for-the-all-party-parliamentary-group-on-me-19-february-2020/ | title = Statement: What's next for the All-Party Parliamentary Group on ME? | last = Shepherd | first = Charles | author-link = Charles Shepherd | date = 2020-02-19 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|url-status= | access-date = 2020-02-21}}</ref> The following people were also reported as attending the first meeting: * [[Deidre Brock]], MP (SNP, Edinburgh North and Leith) * [[Fiona Bruce]], MP (Conservative, Congleton) * [[Wayne David]], MP (Labour, Caerphilly) * [[James Davies]], MP (Conservative, Vale of Clwyd) * [[Mary Glindon]], MP (Labour, North Tyneside) * [[Robert Goodwill]], MP (Conservative, Scarborough and Whitby) * [[Margaret Greenwood]], MP (Labour, Wirral West) * Dame [[Diana Johnson]], MP (Labour, Kingston upon Hull North) * [[Sally-Ann Hart]], MP (Conservative, Hastings and Rye) * [[Kerry McCarthy]], MP (Labour, Bristol East) * [[Navendu Mishra]], MP (Labour, Stockport) * [[Gavin Newlands]], MP (SNP, Paisley & Renfrewshire North) * [[Jonathan Reynolds]], MP (Labour, Stalybridge and Hyde) * [[Alex Sobel]], MP (Labour, Leeds North West) * [[James Sunderland]], MP (Conservative, Bracknell) * [[Stephen Timms]], MP (Labour, East Ham) * [[Michael Tomlinson-Mynors|Michael Tomlinson]], MP (Conservative, Mid Dorset and North Poole) * [[Liz Twist]], MP (Conservative, Blaydon), MP<ref name="Shepherd-19Feb20" /><ref name="tweetcmJan1420">{{Cite web | url = https://twitter.com/MEAssociation/status/1217114028729946113?s=20 | title = Excellent meeting this afternoon to re-establish the APPG on ME. Around 30 MPs and staffers in attendance with no shortage of offers to take on officer roles. So full steam ahead with plans to set up a series of meetings to investigate areas of concern (1/2)pic.twitter.com/y9P11rFAl4 | last = Association | first = M.E. | date = 2020-01-14 | website = @MEAssociation|language=en | access-date = 2020-02-14}}</ref><ref name="tweetcmJan1420-2">{{Cite web | url = https://twitter.com/CMonaghanSNP/status/1217099275169157125 | title = Delighted to have such broad cross-party support for the re-establishment of the APPG on ME. We will be pressing for better treatment programmes for those living with #ME #MyalgicEncephalomyelitispic.twitter.com/pn3vTPOQDT | last = Monaghan | first = Carol | date = 2020-01-14 | website = @CMonaghanSNP|language=en | access-date = 2020-02-14}}</ref> * [[Charles Shepherd]], [[ME Association]] ==== Other members ==== APPG members who did not attend the first meeting include: * [[Louise Haigh]], MP (Labour)<ref>{{Cite web | url = https://twitter.com/LouHaigh/status/1220334293651787776 | title = I am! I just couldn't make their first meeting | last = Haigh | first = Louise | date = 2020-01-23 | website = @LouHaigh|language=en | access-date = 2020-02-14}}</ref> A list of APPG members has not been published yet. === Previous APPG members === All APPGs need to be restarted parliament is dissolved for a general election, and must be restarted after; meaning that the groups change after every election.<ref>{{Cite web | url = https://www.parliament.uk/about/mps-and-lords/members/apg/ | title = All-Party Parliamentary Groups | website = UK Parliament|language=English | access-date = 2020-02-14}}</ref> *From 2015<ref>{{Cite web | url = https://meassociation.org.uk/2015/07/all-party-parliamentary-group-on-me-now-officially-re-registered-8-july-2015/ | title = All-Party Parliamentary Group on ME {{!}} now officially re-registered {{!}} 8 July 2015 {{!}} The ME Association | date = 2015-07-08|language=en-GB | access-date = 2021-09-06}}</ref> - 2017,<ref name=":0" /> the group was chaired by Sir [[Peter Bottomley]] MP. The group was supported by [[Action for ME]], the [[ME Association]], [[ME Research UK]], [[Association of Young People with ME]], [[Tymes Trust]], the [[ME Trust]], [[ReMEmberCFS|reMEmber]], the [[25 Percent ME Group|25% ME Group]], [[Invest in ME]], and [[Blue Ribbon Awareness for ME]] (BRAME).<ref>[https://www.actionforme.org.uk/uploads/pdfs/appg-officers-members-021116.pdf APPG on ME: Officers & Members (September 2016)]</ref> Secretariat was provided by [[Action for ME]] and the [[ME Association]].<ref>[https://www.actionforme.org.uk/make-a-difference/take-action-now/all-party-parliamentary-group-on-me/ Action for ME: APPG on ME]</ref> ===Officers=== * Lady | [[Countess of Mar]], Co-chair * [[Kerry McCarthy]], Co-Chair | last4 * [[Julian Sturdy]], Co-Chair | last4 * [[Carol Monaghan]], Co-Chair | last4 * [[Mark Tami]], Vice Chair | last4 * [[Daniel Zeichner]], Secretary ===Members=== * [[Peter Aldous]] * [[Heidi Alexander]] * [[Hannah Bardell]] * [[Graham Brady]] * [[Tom Brake]] * [[Richard Burden]] * [[Alex Chalk]] * [[Yvette Cooper]] * [[Geraint Davies]] * [[Michael Gapes]] * [[Ben Howlett]] * [[Seema Kennedy]] * [[Ian Liddell-Grainger]] * [[Caroline Lucas]] * [[Anne Main]] * [[Steve McCabe]] * [[Kerry McCarthy]] * [[Ian Murray]] * [[Stephen Pound]] * [[Jeremy Quin]] * [[Jacob Rees-Mogg]] * [[Sir Nicholas Soames]] * [[Keir Starmer]] * [[Dr Philippa Whitford]] * [[Hywel Williams]] ==Minutes & reports== There is apparently no central place where the minutes of the past decade are held. There has been no published APPG minutes or reports in 2021 although there have been meetings. There is a central site holding all minutes & reports from the first decade of the century: *pre 2010, [http://www.appgme.org.uk/ APPG on ME: All minutes & publications 2001-2009] Other minutes available: * November 2010, [https://meassociation.org.uk/2010/11/minutes-of-the-all-party-parliamentary-group-on-me-9-november-2010/ minutes of the all party parliamentary group on me 9 november 2010] The newly reformed APPG discuss areas of interest going forward *Feb 2011, [https://meassociation.org.uk/wp-content/uploads/2011/03/APPG-minutes-16-2-11-Chair-approved.doc APPG minutes 16-2-11] Presentation by Professor Stephen Holgate, Chair of Medical Research Council (MRC) Expert Group on M.E. *May 2011, [https://meassociation.org.uk/2011/06/minutes-appg-on-me-research-meeting-19-may-2011/ minutes appg on me research meeting 19-may-2011] Five APPG MPs met researchers who were attending the annual Invest in ME conference *Jan 2012 [https://meassociation.org.uk/wp-content/uploads/2012/03/CHAIR-APPROVED-APPG-ME-Minutes-24-01-12-.pdf CHAIR APPROVED APPG ME Minutes 24-01-12] Sir John Saville MRC took questions on the 2012 MRC funded studies & resisted charity calls for more ring-fenced funding | last4 *2013, [https://meassociation.org.uk/wp-content/uploads/2013/04/APPG-minutes-13.03.13-final-approved.doc ME APPG minutes, 04/2013 - on severe ME] *July 2014, [https://meassociation.org.uk/2014/07/minutes-of-the-appg-on-me-meeting-and-the-agm-held-on-1-july-2014/ minutes of the appg on me meeting and agm held on 1-july-2014] *March 2016, [https://meassociation.org.uk/2016/04/all-party-parliamentary-group-on-m-e-notes-from-meeting-held-on-thursday-17-march-2016/ notes from APPG meeting held on thursday 17-march-2016] Mainly about social care & discussion of future activity *September 2016, [https://www.actionforme.org.uk/uploads/pdfs/sept-2016-appg-agm-minutes.pdf sept 2016 appg agm minutes] Mainly about the social care inquiry *2020, [https://meassociation.org.uk/2020/03/all-party-parliamentary-group-on-me-biomedical-research-meeting-summary-17-march-2020/ Biomedical research meeting summary] *March 2020 [https://www.actionforme.org.uk/news/appg-on-me-update-biomedical-research-meeting/ appg on ME update biomedical research meeting] “ Chaired by Carol Monaghan MP, the meeting was the first in a series that will focus on key issues facing people with M.E. in the UK and will culminate in a parliamentary report setting out actions for change.” ==Publications & Announcements== *2016, [https://www.actionforme.org.uk/uploads/supporting-your-constituent-with-me-june-2016.pdf APPG on ME: Supporting your Constituent with ME] *2016, [https://www.actionforme.org.uk/uploads/pdfs/appg-officers-members-021116.pdf APPG on ME: List of Officers and Members] *2017, [https://meassociation.org.uk/2017/08/the-appg-on-m-e-comes-to-an-end-focus-of-lobbying-will-now-be-via-forward-me-group-22-august-2017/ The APPG comes to an end, focus of lobbying will now be via FowardME group] ==APPG Inquiries & reports== *2006, [http://www.erythos.com/gibsonenquiry/docs/me_inquiry_report.pdf Inquiry into the status of CFS / M.E. and research into causes and treatment] The Inquiry into CFS/ME research was chaired by Dr Ian Gibson MP it was led by the | last4Group on Scientific Research into Myalgic Encephalomyelitis (M.E.) which was made up of parliamentarians (MPs & Lords). It took evidence over a year & published its findings in November 2006. One of its main recommendations was that the MRC put £11m into biomedical research to balance out funding that had gone into CFS biopsychosocial studies. The report made many noteworthy points and recommendations, see page [[Ian Gibson|Ian Gibson.]] *2010, [https://meassociation.org.uk/wp-content/uploads/2013/02/APPG-Report-v3.pdf Inquiry into NHS service provision for ME/CFS which produced a report] The APPG laid out the basis for their inquiry in 2008<ref>{{Cite web | url = http://www.appgme.org.uk/inquiry/inquiry.html | title = All-Party Parliamentary Group on ME - Welcome to APPG on M.E. | website = appgme.org.uk | access-date = 2021-09-05}}</ref> . The main recommendations of the report were that the numbers of those with MECFS had to be properly counted; that the recommendations of the 2002 chief medical officers CFS/ME report be implemented; that more was done to ensure proper training of Drs, GPs & the health professionals who staffed fatigue clinics. *2016, [https://www.actionforme.org.uk/news/ask-your-mp-to-attend-a-key-meeting-on-social-care-and-m.e/ Inquiry into social care provision for people with M.E.]. One of the main focuses of the APPG which formed in 2015<ref>{{Cite web | url = https://meassociation.org.uk/2015/07/all-party-parliamentary-group-on-me-now-officially-re-registered-8-july-2015/ | title = All-Party Parliamentary Group on ME {{!}} now officially re-registered {{!}} 8 July 2015 {{!}} The ME Association | date = 2015-07-08|language=en-GB | access-date = 2021-09-06}}</ref> and lasted until 2017 was an inquiry into social care. This was chiefly led by the charity [[Action for ME]] who had done their own survey on social care & released a report [https://www.actionforme.org.uk/uploads/pdfs/close-to-collapse-report-UPDATED.pdf Close to collapse] in 2015. ==Learn more== *[http://www.publications.parliament.uk/pa/cm/cmallparty/register/myalgic-encephalomyelitis-me.htm Register Of All-Party Groups - Myalgic Encephalomyelitis (ME)] * [https://www.theyworkforyou.com/ They work for you] - Find your MP *[https://www.actionforme.org.uk/make-a-difference/take-action-now/all-party-parliamentary-group-on-me/ Action for ME webpage for APPG on ME (includes minutes of meetings)] ==See also== * [[Stigma and discrimination]] * [[Ethical issues]] * [[Access to benefits]] * [[Medical Research Council]] * [[National Institute for Health Research]] * [[Forward-ME]] group ==References== {{Reflist}} [[Category:Organizations]] [[Category:Organizations based in the United Kingdom]]
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