Petition to Declare August as Severe ME Awareness Month

In honour of all those living with Severe Myalgic Encephalomyelitis and in memory of Sophia Mirza

Founders note:

As Nevra said in her 2025 video:

“We work for months, risking our health, to create powerful awareness content — yet it’s shared for one day. Those with severe ME need pacing time more than anyone else. A single day or week is not enough. It’s unfair. Let’s make August our month.”

This petition is created in honour of Nevra, who recorded the founding message before becoming paralysed in 2025. Her wish was simple yet profound:

“The people who crash for months just to create one post deserve a month of their own.”

https://www.instagram.com/reel/DNIaz8MoPig/?igsh=MXdzNTR2ZDdycHY4Nw==

💙 Introduction

We, patients, carers, advocates, and allies from around the world, call upon ME organisations, medical bodies, and policymakers to recognise August as Severe Myalgic Encephalomyelitis (Severe ME) Awareness Month.

While May is internationally observed as ME Awareness Month, those living with the severe and very severe forms of this neuro-immune disease are too often left unseen and unheard. They are the ones who pay the highest price — confined to dark rooms, reliant on others for care, and suffering immense physical and neurological pain — yet they are least able to participate in awareness activities that fall within one day or week.

Recognising August as Severe ME Awareness Month would give the most severely affected individuals the pacing and space they need to be represented, to recover, and to be remembered.

📘 Why August?

August 8th is already observed globally as Severe ME Day, commemorating Sophia Mirza, whose death in 2005 marked the first recognised UK death from ME.

Expanding this observance to the entire month of August would:

Allow patients and caregivers to pace their involvement, in keeping with medical guidelines on energy management.

Preserve 8 August as the anchor day of remembrance and advocacy.

Enable sustained, coordinated outreach, research advocacy, and community support.

📊 Fact Summary

Myalgic Encephalomyelitis (ME) is a neuroimmune disease affecting the brain, immune, and energy systems.

Up to 25% of people with ME are estimated to be in the severe or very severe category — housebound, bedbound, or completely dependent on care. (NICE, 2021; 25% ME Group)

Severe ME patients often experience total sensory hypersensitivity, tube feeding, and organ stress.

Awareness campaigns in May disproportionately reflect milder cases, as severe patients cannot engage without risking prolonged post-exertional malaise.

Patients spend months preparing art, writing, and videos, then crash for weeks or months afterwards.

🌍 What We’re Asking

We urge ME organisations, research groups, and government health departments to:

1. Officially recognise August as Severe ME Awareness Month.

2. Continue to honour 8 August as Severe ME Day within the month.

3. Dedicate August to education, remembrance, and advocacy for those most severely affected.

4. Promote accessible, paced participation for patients who cannot engage in standard awareness campaigns.

5. Highlight research into the biology, care, and treatment of severe and very severe ME.

💙 Why It Matters

For decades, the most severely affected have been excluded — not only from medical care but also from the very awareness movements meant to represent them.

A month-long observance will not only give visibility but restore dignity, inclusion, and truth to the narrative of ME.

✍️ Add Your Name

By signing this petition, you affirm that:

The voices of severely ill patients must be heard.

Severe ME deserves sustained awareness and recognition.

You support the call to declare August as Severe ME Awareness Month worldwide.

Together, let’s ensure that no one too sick to speak is ever forgotten.

#SevereMEMonth #SevereME #MEAwareness #ListenToSevereME #AugustForSevereME