#severeme

Why its so important for us all to come together to make a difference.

Did you know that - Woman Suffer more from Myalgic Encephalomyelitis 

What about this - The most common active co-occurring condition was irritable bowel syndrome, with clinical depression, fibromyalgia, anaemia and hypothyroidism also featuring prominently.

"Sonya Chowdhury, chief executive of Action for M.E. and chair of the management group of the study" asks for us to join in - We still need more to join us, so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at  www.decodeme.org.uk/portal

This months #millionsmissingflowers is a pattern inspired by Campanula patula and Moneses uniflora which are both endangered in the UK.

This pattern was created in honour of two severe ME patients Millie and Carla who are both currently in hospital struggling to get the treatment they need.

This lack of appropriate treatment is due to the stigmatisation of Myalgic Encephalomyelitis over decades. Medical professionals receive very little education on ME and often what they receive can be incorrect. The NICE guidelines on ME were updated recently which outlines how to care for severe ME patients in hospital but Drs don’t have to follow them and are choosing not to.

Unfortunately there is a precedent of Severe ME patients not receiving appropriate medical care and often being harmed instead which has lead to the deaths of Sophia Mirza, Merryn Crofts and Maeve Boothby.

I just became unable to even play those phone games that don't have animations.

I am so deeply and horrifically lonely, but people moving around me, talking, expecting me to understand and answer, and deal with their emotions too are more than my inflamed brain can handle.

Self portrait.

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

“The more ill you become, the less care you receive” - Severe ME Inquiry Report

Article

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From @itsaliceella on IG

Today is Severe M.E. Awareness day. A day that makes me feel such heavy grief, not only for what my life could have been like if I hadn’t got sick at 14, but for the millions of people who suffer around the world from this utterly devastating illness. 

I had severe M.E. for several years as a teenager, and it put my entire life to a stop. I left school, and lay in bed for years, as friends went to college, and then uni, and went on to live their lives. I was completely bedbound, had a stairlift in the house, a commode next to my bed, and I was barely existing.

That’s the reality of Severe M.E.

It takes every single thing from you, and when you try and try to get better, the symptoms get worse and worse.

It is hell.

August 8th, marks the birthday of Sophia Mirza. She was the first person in the UK to have Myalgic Encephalomyelitis (ME) officially recorded as the cause of death.

Today honours those living with severe M.E. whom are living with disabling fatigue and a mariad of symptoms. Most are housebound, bedbound, and often living in complete darkness and silence, as they cannot even tolerate light or sound.

Please watch. Please share. This is ours - and so many others’ - reality. These stories deserve to be seen.