Crippled by M.E. but docs say it’s MY fault. It’s astonishing how wrong we are about the condition in this country
EMMA’S CAMPAIGNING ON FORGOTTEN ILLNESS
ME, more than MS and Parkinson’s combined – was shocked when doctors saw this as a “recovery”. She said: “I objectively deteriorated. When I started, I had moderate ME. By the end, I had severe ME, I had to use a wheelchair.” The doctor’s response was to ask if she’d tried hard enough. Emma said: “It was always my fault. I was always doing something wrong. They would say, maybe you didn’t sleep right, you didn’t rest enough.” Emma is no longer following the treatment. Instead she is campaigning for more research and better treatment for this forgotten illness. Two-thirds of Scottish patients with ME have been ill for 10 years or more and fewer than one in 10 are in full-time work, education or training. She said: “In 1978, the Royal Society of Medicine stated that ME is a ‘distinct disease’ and compared it to MS.
“In 2015, the American Institute of Medicine concluded it is a ‘complex, multi-system and often devastating disorder’. In America, Nobel laureates and world class researchers are discovering new things about it.
“But in the UK psychiatrists are determined to claim that it is caused by ‘de-conditioning and false illness beliefs’.
“We’re asking the Scottish Government and scientific community to follow evidence rather than beliefs. Evidence suggests it’s a systemic neuro-immune disease and we should start treating it like one.”
So on Friday, Emma will be outside the Scottish Parliament for a protest in support of the Millions Missing campaign – highlighting how sufferers miss out on things we take for granted.
About 30 other folk with ME from around Edinburgh will drag themselves along too. Those who can’t make it are sending pairs of shoes, labelled with their stories, to show how many people are absent from everyday events because of their illness.
Organising it has taken a huge toll but Emma remains determined. She said: “You trust that health professionals are right but none of them are specialists. There’s no specialist ME consultant in Scotland.” Her parents tried to talk her out of the campaign. But, having seen how much it means, they fully support her. Janet said: “She has had to give up a lot to do this but it has given her a purpose.” ● For more info on the campaign, visit millionsmissing.meaction.net