The long-term illness leaves 75 per cent of those affected unable to work and 25 per cent housebound or bedridden.
Tanya Marlow – a Christian with ME, told Premier many people do not understand what it’s like living with it.
“ME varies in severity but one thing that is core to everyone is that it’s like having a very low battery in your system that keeps on crashing very quickly and is not recharged properly,” she explained.
“At the very severe end, it is absolute hell and it means even light and sound [is] interpreted by the body as pain.
“You can’t move, you can’t speak, you can’t feed yourself and it is a life of darkness and pain for years and years.”
The NHS lists a number of specialist treatments for ME, which is also described as Chronic fatigue syndrome (CFS).
These include cognitive behavioural therapy (CBT), medication, diet and supplements, sleep, rest and relaxation.
Graded exercise therapy (GET) – is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity.
Marlow and other ME activists disagree with GET being offered in a treatment plan.
She claimed: “It’s just cruel – graded exercise therapy is like prescribing sugar for diabetics. It’s harming patients everywhere.”
Marlow described the debate MPs will have about ME as a “victory”.
She also said it was an…
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