Severe ME Day: Remembering the Unseen

This page is a quiet space for remembrance and solidarity, created by ANZMES for Severe ME Day. Each name or initial shared here represents a life profoundly changed by Myalgic Encephalomyelitis.

We honour those we have lost and hold in our thoughts those who continue to fight in the deepest isolation. They are the heart of our advocacy, and their experiences strengthen our urgent call for compassionate care, dedicated research, and meaningful recognition.

InMEmory

We honour and remember the following people lost to ME/CFS. Their fight, their story, and their memory endure. You are not forgotten.

Maeve Boothby-O’Neill, UK

Helen V, NZ

Sarah Buckel, Germany

Bridget O’Shea, USA

Maryline Hinot, France

Betty Mac Connel

Anne Steinberg

Silja

Sarah Miller

Sandra Menth

Mario Pinna, Italy

Heather Colman-McGill, USA

Jan Eric, Germany

Christine Paquette, Québec

Lily Silver, Ireland

Judith Schossböck, Austria

Lena Jones

Francis Martin, Basque Country

Michaela Lex, Germany

Bastien, Austria

Zascha Mann, NZ

Jan B, NZ

Denise Burgy

Marie-Joséphine Barrault, France

Nicolas Hugon, France

Anna Louise Midsem

 Marcus Sedgwick

 Jan Montgomery

Anna Fitzgerald Clarke

Annette O Bright

Sylvia Iversen

Amanda Miles

Beth Mazur, USA

Sohail Alibhai, UK

Graham McPhee, GB

Evette Léee, GB

Retha Viviers, South Africa

Lisa Norris, Halpert 

Jana Huck, Basque Country

Brian Mac Carthy, GB

Rosemary B, NZ

Barry Cope, NZ

Paul Forster, NZ

Gérald Déséreau, France

Faustine Nogherotto, France

Denise Grassa

Amy Elizabeth Mac Laughlin

 Maria Munro

Kara Jane Spencer

Christine Feistl

Karen Griffiths

Dirk Goffin, Belgium

Tammy Roy, USA

Benedikt, Germany

Michelle Lauris, USA

Saskia Willems, Belgium

Eimear Ford, Ireland

Faraz Fallahi, Germany

Denise Burgy, Basque Country

José Antonio de la Arada, Spain


InSolidarity

We hold in our collective thoughts the following people currently living with Severe or Very Severe ME. To those in the darkened rooms, we see you, we hear you, and we stand with you. 

Wendy M, NZ

Eva, NZ

Sophie M, NZ

Nicole M, NZ

AJ, Sweden

Hollis, Alaska

Jann Hines

Maxime A, France

Véronique A, France

David Boucher, France

Hélène F, France

François D, France

 Julien I, France

Johanna L, France

Jill L-R, France

Alexandra G, France

Myriam G, France

Laetitia Kerlo, France

Caroline M, France

Rosa P, France

Emmanuelle P, France

Emilie R, France

Julia S, France

Isabelle Z, France

Rhiannon, NZ

Tammy, NZ

Matt, T, NZ

Jaquie P, NZ

Anon, Akaroa, Canterbury, NZ

Marion Wilk, Germany

F Fahey

Roméo A G, France

Elena A, France

Hélène Cadot, France

Nessa D, France

Sabine D, France

Maxence K, France

Marie L, France

Alix G, France

Valérie G, France

Linda G, France

Laetitia L, France

Alicia Pallenchier, France

Nancy Smith, France

Nathalie P, France

Clémence R, France

Sylvie Testard, France

Karen, UK

Karina, NZ

John, NZ

Rochelle Y, NZ

Anil van der Zee, Netherlands

Gillian, NZ

Helen D, Waikato, NZ

Kylie, NZ

Caroline A, France

Fabiola B, France

Elliott C, France

Sarah E, France

Jérôme F, France

Florent L, France

Hugo L, France

Stéphanie G, France

Laure Guelle, France

Mélina G, France

Aymeric L, France

Vanessa Palix Dury, France

Stephan O, France

Charlotte R, France

Valérie R, France

Marc Y, France

Aubrey, NZ


Every name on this page is a powerful reminder of the human cost of this devastating disability. They are the #MillionsMissing, and they are the reason we will never stop fighting for change.

This tribute represents the names lovingly submitted by our community. It is a tribute, not an exhaustive list, and we hold in our hearts every single person impacted by ME/CFS, whether their name appears here or not. Thank you for joining us in this act of remembrance. 

To add a Name: 

This page is a living tribute. If you would like to add a name to be honoured or acknowledged here, fill in this form by 1st August 2025. Submissions are welcome at any time.


To the Unseen Pillars of Strength

On this Severe ME Day, we pause to honour not only those living in the shadows of Severe-Very Severe Myalgic Encephalomyelitis, but also those who stand beside them—quietly, steadfastly, and often invisibly.

To the carers, support workers, family members, and friends: thank you. You are the lifeline for those whose worlds have shrunk to four walls. You carry out acts of love and care that often go unnoticed—tending to fragile bodies, advocating in complex systems, and holding space for lives that have been profoundly altered.

Your compassion is a form of resistance. Your presence is a form of hope. And your care is a form of justice.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” — Christopher Reeve 

Today, we see you. We honour your sacrifices, your patience, and your unwavering commitment. You are not alone, and your work is not forgotten.

Kindness can transform someone’s dark moment with a blaze of light. You’ll never know how much your caring matters.” — Amy Leigh Mercree

With deepest gratitude,  

ANZMES and the ME/CFS Community

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