Seren Sketches

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.

This month’s millionsmissingflowers is a study of Opuntia basilaris var. treleasei, Bakersfield cactus which is on the US Fish and Wildlife Service endangered list due to urban sprawl and conversion of native habitat into agriculture. About 1/3 of the historical population is now gone.

This month I wanted to focus on some of the numbers and statistics about Myalgic Encephalomyelitis.

- The prevalence of ME is estimated at 17-24 million worldwide.

- 75% are unable to work.

- Roughly 25% are mild, 50% are moderate and 25% are severe.

- On average 5% recover.

- In 72% of cases reported the onset follows an acute viral infection

- ME affects more women than men, in an approximate ratio of 4:1

- The average age of onset is 33 but ME has been reported in children younger than 10 and in adults over 70.

Pogonia ophioglossoides ‘rose pogonia’ is native to North America but it is threatened and endangered in 7 US states.

Myalgic Encephalomyelitis is a complex multi system chronic disease and one of the main issues people with ME face is getting correctly informed and appropriate medical care.

In 2002 supporting documents for report from the Chief Medical Officer’s Independent Working Group stated “There is currently little or no formal training on ME/CFS in the medical curriculum, with students claiming their knowledge often comes from media.” *

Little has changed over the years. In 2021 NICE (National Institute for Health and Care Excellence) updated their guidelines for diagnosing and managing ME yet medical professionals are continuing to ignore these recommendations leaving patients with poor quality care and in some cases harmful care.

Callirhoe scabriuscula (Texas poppy-mallow) is a rare endangered species. Until this month I wasn’t aware it existed but thanks to the new ME awareness campaign #togetherendangered I now do and so do you.

Myalgic Encephalomyelitis is a chronic fluctuating neurological disease. This means symptoms can change by the hour, day, week, month or year. Sometimes over the years patients will fluctuate up and down severities which is how my ME presents. Some may go into remission for periods of their lives but may relapse later on while others may continually decline and in the severest cases this can lead to death.