Tag Archives: me

Scottish Conference passes groundbreaking policy on ME

A year ago, Emma Walker hadn’t got round to joining the Liberal Democrats. She finally took the plunge in November 2017 and since then has made a massive impact. She’s launching a pioneering recruitment campaign (of which more in due course) and at last week’s Scottish Conference, she proposed her motion on ME. ME Action Scotland were there and tweeted about the occasion. They think it might be the first time a political party has adopted a policy on ME in the world.

Emma has sent us her proposing speech, which you can read below:

Imagine if, sitting in your seat here at conference, you suddenly begin to feel ill. Your vision blurs, you head begins to pound, and it feels like you may be having a heart attack. Maybe you collapse or you can’t remember your name. Your body has essentially crashed. Although it may take weeks. months or even years for you to receive a diagnosis, you are now one of the 21,000 people in Scotland living with M.E. For so many this is exactly how it starts. What’s more – there is no test, no cure and no proven effective treatment.

M.E, or myalgic encephalomyelitis, is an invisible illness in many ways. People who have mild to moderate M.E often look well, despite facing crippling symptoms such as bone-aching fatigue, excruciating pain and the inability to tolerate light or noise. 25% of all Scottish patients are severely affected – which means that they are house-bound or bed-bound, which in turn means that they are easy to ignore.

Only an estimated 5% of people with M.E recover fully, and some doctors question if they were misdiagnosed with other fatigue conditions. A slightly higher proportion learn to manage their symptoms and some return to work, but M.E remains in their system.

In Scotland, M.E affects more people than Parkinson’s Disease and Multiple Sclerosis combined. Yet we do not have a single M.E consultant and there is only one clinical nurse specialist, here in Fife. Shockingly, it’s the most common cause of long term school sickness absence.

This illness is a stigmatised one and it is characterised as being the fault of the patient. That they are not trying hard enough to get better, or that their belief that they are ill is the reason why they are ill. Those children who don’t attend school are often marked down as ‘refusing attendance.’ Parents have been taken to court for not sending their kids to school even though they are ill. GPs often send adult patients away telling them that everyone feels tired now and again. In fact ‘chronic fatigue syndrome’ is a term that is sometimes used for M.E. But it is so much more than that. We would rightly never limit our definition of dementia to ‘chronic forgetfulness’, so why do we limit M.E patients to one symptom?

Two pieces of research have influenced the field. The first, in 1970, was led by two psychiatrists who after simply reading case notes from an ME epidemic that had occurred in the fifties, concluded that ‘mass hysteria’ was the cause. The reason why they concluded that? “The high rates in females compared to males.”

It’s easy to shrug this off as outdated, misogynistic research but this research delegitimised ME as an illness. It created a hysteria narrative which has paved the way for the ongoing dismissal of patients. In fact throughout the 80’s and 90’s, M.E became known as ‘yuppie flu’ or ‘the lazy disease’.

In 2005 the PACE trial came along. It was another bunch of psychiatrists testing various treatments, mainly Cognitive Behavioural Therapy and Graded Exercise Therapy. The findings were published in 2011. The data suggested that 64% of patients were improved and 22% were cured by the practices of thinking differently and running around the block. Given that the vast majority of patients regard GET as harmful, doctors and patients with any understanding of M.E immediately disputed the figures, and demanded access to the raw data. It took five years, repeated Freedom of Information requests and a tribunal to eventually access the data.

Independent analysts ruled that the PACE authors’ flawed methodology had been based on their preconceived views that M.E was not a real illness.

13% of the study sample had been recorded as simultaneously sick enough to take part and already recovered! M.E patients who couldn’t walk as far as those with Class 2 heart failure were recorded as being fit enough to return to work.

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