BED for Severe M.E.

8th August 2024 will mark the first annual BED for Severe M.E. Campaign!

25% of people living with Myalgic Encephalomyelitis are severely affected. Those living with Severe M.E are either bedbound and/or mostly or completely housebound. They have specific care needs due to the illness being exacerbated by factors such as movement, noise and light. Paralysis, black-outs, coma-like states, tremors, cardiac dysfunction, inability to chew or swallow, and stroke-like episodes are just a few ‘symptoms’ of Severe M.E.

Why BED?

For someone with severe M.E., BED is their whole world because they often need to spend most, if not all, of their time lying down. M.E. causes Post-Exertional Malaise (or Post-Exertional Neuro-Exhaustion), pain, and sensitivity to light and sound amongst many other symptoms, making it very difficult to do everyday activities. BED is often their main place for rest, comfort, and even basic activities like eating, bathing, and ‘socialising’ online or with friends and family (if stimulation tolerated). BED can become a sanctuary. Essentially, BED becomes more than just a piece of furniture—it’s a vital part of their daily life and health management.   

There are 7 components to BED for severe M.E, get involved!

An illustration for BED for Severe M.E. - a young black woman laying in a bed wearing an eye mask.

BED for Severe M.E. – Wear Your PJs to Work!

On the 8th August get your employees to wear pyjamas to work and donate £2 a person to raise awareness and research for Severe M.E.

An illustration for BED for Severe M.E. - an old white woman laying in a bed wearing an eye mask.

BED for Severe M.E. – Buy a Badge to Support M.E. Research

BED for Severe M.E. is fundraising for Smile for ME (patient support) and Cure ME (biomedical research into M.E.) by selling special ‘BED for Severe M.E.’ badges.

An illustration for BED for Severe M.E. - a young indian woman laying in a bed wearing an eye mask.

BED for Severe M.E. – Donate to Support M.E. Research

All monies received into the PayPal fundraising pot will be split 50/50 between Smile for ME and Cure ME.

Smile for ME
Donate on PayPal using this QR Code
An illustration for BED for Severe M.E. - a young white boy laying in a bed wearing an eye mask.

BED for Severe M.E. – NHS Protocol for Severe M.E. campaign – Next Step

ME Foggy Dog has been campaigning for an NHS Protocol for Severe M.E. since Feb 2024, as there are currently no protocols/policies for people with Severe M.E. within the NHS.

Let’s go ‘local’! Contact Your Local ICB, Health Board or Trust

Please contact your ICB (Integrated Care Board), health board, or Trust and ask them to work with ME Foggy Dog. Contact details are available via the links below.

Please copy and paste the letter provided, edit as appropriate and help to make change happen!

An illustration for BED for Severe M.E. - a young hispanic woman laying in a bed wearing an eye mask.

BED for Severe M.E. – ‘In Loving Memory’ Board

This board is to remember the lives of those who have passed away with Severe M.E. through the eyes, memories, and recollections of their loved ones (family and friends).

The board will be posted online to show the human impact of Severe M.E. on August 8th 2024.

An illustration for BED for Severe M.E. - a middle aged Asian man laying in a bed.

BED for Severe M.E. – BED ‘Party’ on Social Media!

Using the hashtag #BedForSevereME, we’re asking people with Severe M.E. / carers to take photos showing their favourite pyjamas and post it on social media to help raise awareness on 8th August.

‘Mingle’ online with those awesome people who have shown support and solidarity by wearing their PJs to work!

You can also download and post our BED for Severe M.E. graphics on social media, on 8th August 2024.