#severeme

Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

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.

Stonebird books on severe ME and caring now available to download for free

Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)