BBC News article, by Laurel Ives, 25 June 2018: MP Carol Monaghan leads campaign for new ME treatment
Chronic fatigue syndrome, or ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession – according to an MP who has been campaigning in Parliament to change attitudes.
During an emotional Westminster Hall debate, Scottish National Party MP Carol Monaghan argued that graded exercise therapy (GET) – offered most commonly on the NHS – is often damaging and in need of serious revision.
But researchers behind a trial of the therapy say it is a safe method of treatment.
Guidelines on how the illness should be treated in England are currently being updated.
In the debate, Ms Monaghan said:
“Characterised as ‘yuppie flu’, and misunderstood by doctors and politicians alike, we need properly-funded biomedical research into the causes and treatment of those with ME.
“Less than £1 is spent annually on each ME patient in the UK.”
GET involves patients doing increasing amounts of exercise, over weeks and months, depending on their individual needs to aid their recovery.
But MPs cited stories from constituents suffering with ME who say that GET has made their illness worse.
Ellie Bunce, 21, was diagnosed with ME in 2016 and it has forced her to put her sporting ambitions on hold.
“At the time I was 19, a student athlete – in my second year of university – with hopes of rowing internationally. I was fit, active, I ate well, I exercised.
“I was happy and positive and yet one day I woke feeling as if I was dying. My whole body ached in a way I’d never felt before.”
Ellie says the first specialist she saw suggested her lifestyle was to blame.
“He said I should make more effort to wake up at 09:00, get showered, dressed and then go on a long walk. This was my ‘treatment plan’.
“However, the more I pushed myself to get out of bed, the more ill I got.”
After several months, Ellie was eventually diagnosed with ME.
“Day-to-day every inch of my body is in pain, I struggle to read and concentrate, I’m too tired to move.
“I spend upwards of 20 hours in bed a day. I’ve been stripped of my hobbies, energy and work.
“I live in the hope that one day doctors will find a treatment and that one day I will be better.”