MECFS Canterbury

18/08/2026

Ka mau te wehi, Anzmes on transitioning to a charitable trust.

A new chapter for an organisation that has been doing such important mahi for people living with ME/CFS across New Zealand.

10/08/2026

Great coverage of Long Covid Support Aotearoa ‘s Political panel held today.

People with Long Covid are calling on politicians to collect better data on the disease, and enable those with it to access disability support services.

08/08/2026

07/08/2026

Today, thousands of people won't see this post... Even though it’s about them.

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Because they have Severe Myalgic Encephalomyelitis (ME/CFS).
Severe ME/CFS is profoundly disabling.
Affecting around 25% of people with ME/CFS.

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People with Severe ME/CFS disappear from
everyday life.
Because the illness leaves them with no choice.

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People with Severe ME are confined to bed for most or all of the day.
Everyday activities most people take for granted can become impossible.

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Severe ME/CFS takes away more
than energy...
It takes away independence.
Education.
Careers.
Relationships.
Aspirations.
And even the freedom to leave a bedroom or tolerate the world outside it.

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The hallmark symptom of ME/CFS is Post- Exertional Malaise (PEM), a worsening of symptoms after activity that would previously have been tolerated.

This can follow physical, cognitive or emotional exertion and in Severe ME/CFS, even sensory stimulation such as light, sound or touch.

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PEM is not relieved by rest alone and often has a delayed onset of 12-48 hours.
For people with Severe ME/CFS, PEM can be prolonged, taking weeks, months or in some cases, longer to resolve.

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The impact of Severe ME/CFS is still widely underestimated.
The reality is that many people with Severe ME/CFS are living at the very limits of what their bodies can tolerate and worsening does not always have a clear cause.

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Today, we recognise everyone living with Severe ME/CFS.

We acknowledge the families and carers who support them every day.

And those who cannot access healthcare safely, face systemic barriers, unable to seek adequate support.

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Severe ME Day 8.8
8th August 2026

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07/08/2026

1 in 30 New Zealanders now have ME/CFS.

Up to 25% are housebound or bedbound.

Tens of thousands are invisible to the health system.

Early recognition prevents harm.

ME is now affecting 1 in 30 New Zealanders — around 180,000–185,000 people.

Up to 25% become housebound or bedbound.

That’s tens of thousands of patients across Aotearoa who cannot attend clinic appointments, are missing from workplaces and schools, and remain invisible to the health system.

Early recognition prevents deterioration.

Safe management prevents harm.

Clinician education saves lives.

PHOs play a critical role in ensuring every patient is taken seriously.

Learn more this August 8th.

05/08/2026

On August 8 at 8:00 PM, we invite you to join us in a quiet act of solidarity to symbolise the isolation and extreme light sensitivity experienced by people with Severe ME.

creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME.

Severe ME Day honours the 25% of people with who are housebound or bedbound living with the most disabling form of this illness. Many live in quiet, darkened rooms, often unable to eat and requiring care to carry out daily activities.

What to do?:

At 8:00 PM on August 8, please join us and dim your lights or sit in darkness for a few moments of quiet reflection.

If you wish to, take a photo of a candle, soft light or darkened space and share it to your social media.

Share a quote or fact about Severe ME or use one of our post templates and caption examples.

Remember to use the hashtags and to quietly show your support.


Image Frame:
https://www.canva.com/design/DAGux3PkxTg/p3cun_KzlKxQSH9vhu2KNQ/view?utm_content=DAGux3PkxTg&utm_campaign=designshare&utm_medium=link&utm_source=publishsharelink&mode=preview


Downloadable Images:
https://canva.link/fwmsmy30z00nypr

Caption Example 1:
I’m turning my ME this Severe ME Day in solidarity with those forced to live in silence in darkened rooms.


Caption Example 2:
Tonight at 8:00 PM, I turned my for those who live in darkness. Not by choice, but because their bodies cannot tolerate light, sound or touch. Severe ME is a devastating illness, often rendering people bedbound, unable to speak, eat, or even tolerate gentle light. This is for them. We see you. We honour you. .

We particularly encourage mildly affected followers if they have capacity and allies to carry this message forward. Your participation amplifies the realities of those who don’t have a voice and can't be seen or heard right now in quiet solidarity.