I have set up this petition on behalf of  Millie, who is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS). She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness. 

Millie agreed to come  into the Royal Lancaster Infirmary on 30th January 2024  after 4 paramedics carefully helped her down from her bedroom in a scoop to the ambulance. She and her family were hoping that the stay would be short and a feeding tube given as soon as possible and to get Millie back home where she is able to manage her sensory hypersensitivity well.

Since Mille has been in hospital, it has become very clear that that hospital environment is making Millie’s severe ME so much worse, due to the stimulating environment, all the tests and the complete lack of understanding of severe ME, and horrifically the hospital has made the unacceptable decision of sectioning Millie. 

The hospital has stated that Millie has to be between 25 - 45 degrees for NG tube feeding. Millie cannot tolerate this due to her severe POTs and feels like she is being tortured. These guidelines are based on stroke patients and are not relevant to ME patients. 

We realised after a day or so that the only type of feeding tube she could go home with in our area was a PEG tube so Millie agreed and asked for this and to home as soon as possible.

The GMC states the patient has a right to a second opinion of their choice. ME experts have contacted the hospital to explain a best treatment for Mille including a PEG tube, being fed at 5 degrees, and being released home into a quiet environment as soon as possible – this has all been ignored which is going to have long term detrimental effect on Millie, if not terminal. Millie has repeatedly been given inappropriate treatment and abuse that is negatively life altering and potentially life threatening since being in hospital.

In addition, the hospital has limited Millie’s family in the hospital (especially her Mum, Millie’s main support and carer) so Millie cannot receive the correct and safe care and advocacy needed for a severe ME patient.

We want:

•       Millie to be treated in accordance with the NICE guidelines for ME 

•       Millie to be believed and it to be recognised that this is not a psychological/mental illness

•       Millie to be seen by specialists with extensive knowledge of severe ME

•       Millie to have a PEG tube, being fed at 5 degrees and to come home as soon as possible 

•       Millie to be able to have family visit whenever, as Millie is so unwell, she needs support and advocacy all the time

Thank you,

Millie and her family