The Lived Experience of Severe ME - Severe ME in Young People

   

" She had hyperacusis and noise had to be controlled in her room, within our house and outside the house - if this was beyond our control ear plugs and industrial strength ear-defenders had to be worn however these caused their own problem. 

 

Noise would cause her extreme pain and myoclonic seizures.

 

Her skin was hypersensitive to touch and even the gentlest touch could cause agony. I could stroke her cheek and head and sometimes hold her hand. We had a special sign for a cuddle as I was unable to cuddle her anymore. 

 

She could only tolerate one person in her room at a time due to movement hypersensitivity which would cause confusion and increased pain. Even pictures on her wall and items in her room could cause confusion so had to be kept to a minimum. When the district nurses came to change her syringe drivers she had to have an eye mask on.

 

She was in severe pain always despite being under the care of our local hospice at home and on three syringe drivers delivering extremely high doses of pain relief, anti sickness and neuropathic medication 24 hours a day.  

 

 

Her hospice doctor said she had never witnessed such suffering and felt so helpless. 

 

And pain, pain and more pain, paralysis and isolation, never the simple joy of food, drink or conversation, never being able to give or receive a cuddle, never seeing the sun or feeling a gentle breeze on your skin just pain and darkness and repeat."

Words above by Clare Norton, mum and carer to her daughter Merryn Crofts who died from Severe ME related complications in 2017

 

Resources for Educating Carers, Doctors and GPs about ME & Severe ME in Young People 

Two videos, with Dr Nigel Speight in discussion with Prof Peter Rowe, provide information on the nature and management of ME and Severe ME in children., a useful resource for those who care for children with ME and Severe ME. These videos, 12 and 14 mins long, could also be used for educating healthcare professionals about ME and Severe ME in paediatrics, an invaluable learning resource for any GP. The two videos, include: (i) a discussion on the diagnostic features, key symptoms and how best to support children living with ME and Severe ME; (ii) information for parents, doctors and teachers who are unsure how to manage ME or Severe ME. Link to the two videos here

International Paediatric Guidelines

Frontiers Paediatric Primer

The two short videos linked above follow publication of the comprehensive Frontiers paediatric primer "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer" by Prof Peter Rowe, Dr Nigel Speight and others, published in 2017 which we share via the following link: https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

International Consensus Primer

The ME International Consensus Primer about Adults and Paediatric ME was was written to provide clinicians with a one-stop, user-friendly reference for the diagnosis and management of ME. Please see that primer here.

Further Resources

Please see our document which includes information about the clinical features of the very severely affected in paediatric M.E.; Management in paediatric M.E. and information to support parents with the issues around school absence and home education, here.

#Call4Protocol4SevereME

Many thanks to Josh Biggs and Natalie Bolton creators of the two films linked above.

Many thanks to Dr Nigel Speight and Prof Peter Rowe for your insights to Severe ME

Our sincere thanks to Clare Norton who has opened our eyes to Severe ME