Association of Young People with ME

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Ayme logo.png

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
Retrieved from "https://me-pedia.org/w/index.php?title=Association_of_Young_People_with_ME&oldid=215658"