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 ME.[1] We have minutes from the ME APPG dating from 2001, with references to the existence of an earlier APPG chaired by Tony Wright MP[2].. 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“ .[3][4]

APPG Focus[edit | edit source]

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

In addition:

  • Producing a key report on issues impacting ME sufferers[5]

APPG members[edit | edit source]

The first meeting since the 2019 general election was held in February 2020, and arranged by Carol Monaghan MP.[3]

Officer's Roles[edit | edit source]

The following people were also reported as attending the first meeting:

Other members[edit | edit source]

APPG members who did not attend the first meeting include:

A list of APPG members has not been published yet.

Previous APPG members[edit | edit source]

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.[9]

Officers[edit | edit source]

Members[edit | edit source]

Minutes & reports[edit | edit source]

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.

Publications & Announcements[edit | edit source]

APPG Inquiries & reports[edit | edit source]

The Inquiry into CFS/ME research was chaired by Dr Ian Gibson MP it was led by the Group 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.

The APPG laid out the basis for their inquiry in 2008[13] . 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.

One of the main focuses of the APPG which formed in 2015[14] 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[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. 1.01.1 Forward-ME (July 2017). "Minutes of the Meeting held at the House of Lords, Tuesday 11 July 2017, 2pm". Forward-ME. Retrieved February 14, 2020.
  2. "All-Party Parliamentary Group on ME - Welcome to APPG on M.E." www.appgme.org.uk. Retrieved September 4, 2021.
  3. 3.03.1 #MEAction (January 12, 2020). "New APPG on ME for the UK - Meeting". #MEAction. Retrieved February 14, 2020.
  4. "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". August 22, 2017. Retrieved September 4, 2021.
  5. 5.05.15.2 Shepherd, Charles (February 19, 2020). "Statement: What's next for the All-Party Parliamentary Group on ME?". The ME Association. Retrieved February 21, 2020.
  6. Association, M. E. (January 14, 2020). "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". @MEAssociation. Retrieved February 14, 2020.
  7. Monaghan, Carol (January 14, 2020). "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". @CMonaghanSNP. Retrieved February 14, 2020.
  8. Haigh, Louise (January 23, 2020). "I am! I just couldn't make their first meeting". @LouHaigh. Retrieved February 14, 2020.
  9. "All-Party Parliamentary Groups". UK Parliament. Retrieved February 14, 2020.
  10. "All-Party Parliamentary Group on ME | now officially re-registered | 8 July 2015 | The ME Association". July 8, 2015. Retrieved September 6, 2021.
  11. APPG on ME: Officers & Members (September 2016)
  12. Action for ME: APPG on ME
  13. "All-Party Parliamentary Group on ME - Welcome to APPG on M.E." www.appgme.org.uk. Retrieved September 5, 2021.
  14. "All-Party Parliamentary Group on ME | now officially re-registered | 8 July 2015 | The ME Association". July 8, 2015. Retrieved September 6, 2021.

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.

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.

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 (ME) - 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 (ME) - 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.

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)

myalgic encephalomyelitis (ME) - 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.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.