Association of Young People with ME

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The Association of Young People with ME (AYME) was a UK national charity supporting children and young people affected by ME/CFS with members under 25. It was based in Newport Pagnell and the Chief Executive Officer was Mary-Jane Willows. Its lead medical advisor was Doctor Esther Crawley. The charity was a member of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) and UK CFS/ME Research Collaborative (CMRC).

In April 2017 the charity merged with Action for ME, forming its Children's Services department run by Mary-Jane Willows.[1]

Aims[edit | edit source]

Funding[edit | edit source]

Controversies[edit | edit source]

Support of research of Dr Esther Crawley

AYME have been active, vocal supporters and participants in Dr Crawley's paediatric trials which have involved the Lightning Process, Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). Its role in the FITNET online Cognitive Behavioural therapy study was to "help inform patients".[2]

AYME gave evidence in support of the SMILE trial during the study's ethical procedures opposing the views of the ME Association and The Young ME Sufferers Trust.[3]

PACE Trial

The charity has made supportive statements about the PACE trial.[4]

In early 2016 AYME was asked by patients, including Clark Ellis, to support the release of the PACE trial study data. AYME responded by saying it did not support release of the data.[5]

Notable people[edit | edit source]

History[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ https://m.facebook.com/actionforme/photos/a.76870643208.71362.72990583208/10155087150888209/?type=3 Action for ME is pleased to announce the launch of our new Children's Services Team
  2. ↑ http://www.nets.nihr.ac.uk/projects/hta/14192109 FITNET to treat Paediatric CFS/ME (NIHR)
  3. ↑ http://www.meassociation.org.uk/2011/01/ethics-committee-finally-approves-controversial-pilot-into-lightning-process-and-children-with-mecfs/ SMILE gets ethical approval - ME Association (January 2011)
  4. ↑ http://www.ayme.org.uk/web/guest/news/-/asset_publisher/2uYbtahTJKdk/content/april-2011-analysis-of-pace-trial-results The PACE trial results – an analysis by Vivienne Parry, OBE
  5. ↑ https://autodidactauthor.wordpress.com/2016/03/06/pace-trials-forbidden-fruit-ayme-make-final-statement/ PACE Trial’s Forbidden Fruit: AYME Make Final Statement

See Association of Young People with ME.

Association of Young People with ME (AYME) - AYME was a UK national charity supporting children and young people affected by ME/CFS with members under 25. It's lead medical advisor was Doctor Esther Crawley. In April 2017 the charity merged with Action for ME, forming its Children's Services department run by Mary-Jane Willows.

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.

UK CFS/ME Research Collaborative (CMRC) - A UK group of researchers and ME/CFS patient groups led by Professor Stephen Holgate. Its launch in 2013 was covered by the Science Media Centre. Since 2014, the collaborative sponsors the CFS/ME Research Collaborative Conference.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognition Thought processes, including attention, reasoning, and memory.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

See ME/CFS.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

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