Highlighting the seriousness of Myalgic Encephalomyelitis (M.E.)

 

   Trigger warning ⚠: the post mentions deaths in Myalgic Encephalomyelitis (ME)

“ME cruelly killed my daughter - the Dragons Den scandal is a disgrace” ~ Clare Norton

Severe ME

The symptoms experienced by someone with Severe/Very Severe/Profoundly Severe ME can be unimaginable - the level of highly tormenting hypersensitivities to ordinary things are both distressing and attacking, adding to the difficulty of getting safe, supportive, and experienced care.

In its worst form, people with severe, very severe and profoundly severe ME cannot eat or drink, are permanently confined to bed or hospitalised, cannot move, cannot sit or stand up, and are completely reliant on others for their care.

Some severe ME patients suffer from paralysis and malnutrition. Some die because of medical ignorance and neglect.

M.E. ends lives and can result in death

We hope that by posting the following information others will become aware of the horrors perpetrated on those with ME and Severe ME, and on others in the ME community including family members and carers.

Sophia Mirza

In 2005, in the UK, Sophia Mirza (32) died due to medical abuse and ignorance. She died as a result of acute renal failure arising from the effects of ME. An official inquest was held to determine Sophia’s cause of death. The coroner concluded that she died as a result of ME; she was the first person in the UK to have their cause of death registered as ME. More about Sophia here.

Unfortunately, Sophia is not the only one who has died from Severe ME.

Maeve Boothby O' Neill

In 2021, in the UK, Maeve Boothby O’Neill (27) died from very severe ME following medical neglect. Doctors denied her a feeding tube, and later denied total parenteral nutrition which could have saved her life. An inquest into Maeve’s case is ongoing. Maeve's mum, Sarah Boothby pointed to systemic failures in the care prior to her daughter Maeve’s death while battling severe ME. More about Maeve here.

Merryn Crofts

Clare Norton is the mother of Merryn Crofts (21) who became the second person in the UK to have ME listed on their death certificate after her death in 2017.
Years after her death, Merryn’s mum Clare Norton has bravely spoken out again about her daughter, defending her and highlighting the seriousness of ME following the acuseed treatment claim which featured on the Dragons Den on Jan 18th. More about Merryn here.



Merryn's mum Clare was recently interviewed by Ellie Fry from the Mirror, an interview which resulted in a piece that illustrates why the ME community are being harmed by a claim that a snake oil treatment cures ME:

https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464

We believe that it is incumbent on each and every one of us in the ME community, who are able to, to find a way to ensure that inappropriate and potentially harmful information and practices around ME are reported and highlighted so that informed and educated interventions can be made, inappropriate information be corrected and the reality of ME and severe ME highlighted.

Update 20/02/24

“There is no in-patient provision anywhere within the NHS for anyone with severe or very severe ME; …

this must be tackled at the very highest level.”

Our sincere thanks to Clare Norton & Sean O’ Neill for highlighting the lack of medical care for severe ME patients in interviews with Channel 4 News. 

This is not just an issue in the UK but also in Ireland and worldwide.

…. “difficult hospital admissions, neglect, stigmatisation, disbelief, resulting in death.”

Severe ME is one of the most disabling diseases there is, where patients experience profound levels of suffering and extreme symptoms, which can be life-threatening. 

Merryn Croft’s mum Clare Norton, and Maeve Boothby O’ Neill’s dad Seán O’Neill appeared recently on Channel 4 News to talk about UK NHS healthcare’s refusal of appropriate care for their daughters, and to raise awareness amongst health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.

(This may be a difficult watch)

The Channel 4 News interviews here

We remember Sophia, Merryn & Maeve