All-Party Parliamentary Group on Myalgic Encephalomyelitis

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 ME. We have minutes from the ME APPG dating from 2001, with references to the existence of an earlier APPG chaired by Tony Wright MP.. 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“ .

APPG Focus

The APPG for ME agreed to focus on the following key topics:

• Access to healthcare
• Access to financial support and welfare benefits
• Protection for 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

APPG members

The first meeting since the 2019 general election was held in February 2020, and arranged by Carol Monaghan MP.

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

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, MP (Conservative, Mid Dorset and North Poole)
• Liz Twist, MP (Conservative, Blaydon), MP
• Charles Shepherd, ME Association

Other members

APPG members who did not attend the first meeting include:

• Louise Haigh, MP (Labour)

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.

• From 2015 - 2017, 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, reMEmber, the 25% ME Group, Invest in ME, and Blue Ribbon Awareness for ME (BRAME). Secretariat was provided by Action for ME and the ME Association.

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, APPG on ME: All minutes & publications 2001-2009

Other minutes available:

• 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, APPG minutes 16-2-11

Presentation by Professor Stephen Holgate, Chair of Medical Research Council (MRC) Expert Group on M.E.

• 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 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, ME APPG minutes, 04/2013 - on severe ME
• July 2014, minutes of the appg on me meeting and agm held on 1-july-2014
• March 2016, notes from APPG meeting held on thursday 17-march-2016

Mainly about social care & discussion of future activity

• September 2016, sept 2016 appg agm minutes

Mainly about the social care inquiry

• 2020, Biomedical research meeting summary
• March 2020 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, APPG on ME: Supporting your Constituent with ME
• 2016, APPG on ME: List of Officers and Members
• 2017, The APPG comes to an end, focus of lobbying will now be via FowardME group

APPG Inquiries & reports

• 2006, 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.

• 2010, Inquiry into NHS service provision for ME/CFS which produced a report

The APPG laid out the basis for their inquiry in 2008 . 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, Inquiry into social care provision for people with M.E..

One of the main focuses of the APPG which formed in 2015 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 Close to collapse in 2015.

Learn more

• Register Of All-Party Groups - Myalgic Encephalomyelitis (ME)
• They work for you - Find your MP
• 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

(APPG) - A British group of backbench members of parliament, from all political parties and from Houses of Commons and Lords, who meet to discuss ME.

All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) - A British group of backbench members of parliament, from all political parties and from Houses of Commons and Lords, who meet to discuss ME.

See All-Party Parliamentary Group on Myalgic Encephalomyelitis.

All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) - A British group of backbench members of parliament, from all political parties and from Houses of Commons and Lords, who meet to discuss ME.

See myalgic encephalomyelitis.

See single nucleotide polymorphism.

single nucleotide polymorphism (SNP) - A single nucleotide polymorphism (SNP, pronounced "snip") is a potential genetic mutation that occurs in a single spot in the human genome; a difference in a single DNA building block. SNPs are often represented by an "rs" number, such as "rs53576".

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See ME/CFS.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

See chronic fatigue syndrome.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)