I’m near tears with relief and happiness. I can’t read it all yet but just read this part of severe ME (sorry it’s coming up strange when I copy and paste):
“Be aware that people with severe or very severe ME/CFS may experience some of the following symptoms that significantly affect their emotional wellbeing, communication, mobility and ability to interact with others and care for themselves:
• severe and constant pain, which can have muscular, arthralgic or neuropathic features
• hypersensitivity to light, noise, touch, movement, temperature extremes and smells
• extreme weakness, with severely reduced movement
• reduced ability or inability to speak or swallow
• cognitive difficulties, causing a limited ability to communicate and take
in written or verbal communication
• sleep disturbance such as unrefreshing sleep, hypersomnia, altered
sleep pattern
• gastrointestinal difficulties such as nausea, incontinence, constipation
and bloating
• neurological symptoms such as double vision and other visual
disorders, dizziness
• postural orthostatic tachycardia syndrome (POTS) and postural
hypotension.
Recognise that symptoms of severe or very severe ME/CFS may mean that people:
DRAFT FOR CONSULTATION
1 • 2
3
4 • 5
discussing and regularly reviewing with the child or young person how they want to be involved in decisions about their care (taking into account that their parents or carers may act as advocate)
taking into account that children and young people may find it difficult to describe their symptoms and may need their parents or carers to help them.
6
7 Awareness of severe or very severe ME/CFS
need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)
are housebound or bed-bound and may need support with all activities of daily living
need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
need aids such as wheelchairs
cannot communicate without support and may need someone else they have chosen to be their advocate and communicate for them
are unable to eat and digest food easily and may need support with hydration and nutrition (see the section on dietary management and strategies)
have problems accessing information, for example because of difficulty with screens, noise and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.
Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:
• known to the person and their family members or carers wherever possible
• aware of the person’s needs.
Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person (for example, worsening their symptoms). For people with very severe ME/CFS, think about discussing this with the person’s family or carer on their behalf.”
Thank you so much to everyone who was involved in this. It’s got everything that I desperately was fighting for when trying to access hospital care, but couldn’t get. It explains so many symptoms of severe ME that are disbelieved, and the accommodations that I need.
thank you
