InterAction 117 - Autumn 2024

A message from Sonya Chowdhury, CEO of Action for ME

117 P2 Changing the story

Updates on the delivery plan, the need to reconstitute the APPG on ME, and the importance of advocating the needs of those with severe ME.

117 P4 NEWS: In the wake of the General Election

Our response to the Green Paper
www.actionforme.org.uk/green-paper-response

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Announcing a new fundraising partnership with Henley Distillery, who have made us their first charity partner

117 p7 NEWS and FUNDRAISING

Our CEO, Sonya Chowdhury, and Sian O'Leary (World ME Alliance)  spoke at the first International  Conference on Clinical and Scientific Advances in ME/CFS and Long Covid in Portugal in April 2024.

World ME Day 2024 strove to build a #GlobalVoiceforME on 12 May tinyurl.com/globalvoiceME

The World ME Alliance has established a new strategic leadership board tinyurl.com/VMASLB

117 P8 Global Collaboration [links in track description]

This year's Blue Sunday raised over £40,000 for ME charities across the world! In this article, we hear from Anna Redshaw, the founder of the Blue Sunday tea party for ME.

117 P9 Getting together for tea and ME

How one person's legacy is funding groundbreaking research into ME.

Read more about Audrey Ryback's research at tinyurl.com/audrey-ryback-research

117 P10 Change beyond a lifetime

Medical students share their reflections in the winning essays from Learn about ME's inaugural essay competition.

www.actionforme.org.uk/learn-about-me

117 P11 Learning points about ME

Avril McLean reflects on the challenge of self management for those living with an invisible, misunderstood condition

117 p14 No one can do it alone

Our Information and Support team answer a question about getting an ME/CFS diagnosis for a child.

117 P15 Dear Team

We talk to Scottish singer-songwriter Stuart Murdoch about his journey with ME, which he shares in his new book, Nobody's Empire.

This interview is also available to read online: https://www.actionforme.org.uk/news/a-talk-with-stuart-murdoch/

117 P16 "Everybody has a story"

Trying to explain what it's like to have ME is hard. Here, members of the ME community share their feelings

117 P19 "I want to live again"

NoLoyiso Jolobe, a black South African woman living in the UK, reflects on having severe ME in two cultural contexts.

117 P24 Communities of disbelief

Watching the documentary 'I am: Celine Dion' reminded Amanda Shortman of the struggle of retaining a sense of your identity when you have ME.

117 P23 Who am I?

NoLoyiso Jolobe, who wrote the article on p24 (see previous track), also writes poems in English and in isi-Xhosa, a South African language.

117 P 25 Finding Expression In Poetry

Mlindeni Gabela, from Cape Town, South Africa, shares his story as part of the World ME Day 2024 global voices campaign.

More stories can be found here: worldmealliance.org/global-voice-for-me

117 p 26 "A man must act strong even if he is in pain"

Hertfordshire ME/CFS group have been having an impact as the Community of Residence at St Alban's Museum +Ggallery.

117 P 27 Representing The 'missing' through art in St Alban's

Rose reflects on acceptance and the importance of living in the 'now': "If you have the desire to do, you will lose the satisfaction of being".

Existing forum members can find the post she mentions here: tinyurl.com/comfyautumn

If you wish to join our ME Friends Online Forum, go to www.actionforme.org.uk/MEFO

117 P 29 Rose's Diary -Different perspectives

117 P30 Creative corner

117 p32 Creative corner (continued) and Chiara's concert

Claire Wade shares her virtual adventures -see instagram.com/clairerwade

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Visit www. wildandtired.co.uk to explore a new map for those with limited energy who want to be out in nature

117 P33 Claire’s virtual travels...and wild places for tired people

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Need information or support about any aspect of living with ME? Call us on 0117 927 9551 or visit www.actionforme.org.uk