Christian activists with Myalgic encephalomyelitis (ME) are praying a debate in parliament on Thursday about the treatment and funding of patients with the condition will bring about positive change.
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 “affirmation of the patient voice after being silenced for so long by a very powerful psychiatric lobby that's been saying that ME is caused by exercise phobia and is basically a behavioural disorder that can be cured by graded exercise and positive thinking”.
She said she hoped there would be agreement on the two proposals in the motion that states Britain should invest in biomedical research for ME and GET should be scrapped.
- For more information on the outcome of the M.E. debate in Parliament visit the ME Association website.
The ME Association
Please help us continue our work
Please donate – whatever you can afford – to help us continue with our work to make the UK a better place for people with M.E. Just click the button below to visit our JustGiving page:
Or why not join the ME Association as a member and become a part of our growing community? For a monthly (or annual) payment you will not only be helping to keep us doing what we do best, but will receive our exclusive ME Essential magazine.