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.

What’s more, this trial – which advocated CBT / GET treatments – was co-funded by Department of Work & Pensions (DWP). This was unique for a clinical trial, and deeply disturbing. You see, people with psychological illnesses receive less in benefits than physical illnesses. And because the study’s authors had stated that de-conditioning treatments such as CBT will cure a patient, the DWP has since refused benefits to M.E patients because, they said, the patient had not worked hard enough in GET or because the illness was all in the patient’s head (the DWP themselves referencing back to the mass hysteria and lazy narratives from previous generations).

One researcher was working as an advisor to DWP at the time of the trial. His special interest? Reducing social security benefits to disabled M.E claimants. Other researchers were consulting with large insurance companies whose pay outs are less for psychological conditions than they are for physical ones.

The conclusion that the onus to get better is on the patient has led to the situation we are in today. That is why this motion calls for wide scale improvements on training, patient support, research and clinical care. And of course the removal of CBT and GET from the SGPS.

I’d now like to address the amendments directly.

The first amendment refers to ‘pacing.’ Pacing was another technique that was explored during the PACE trial. Pacing is a management strategy, it’s about learning to live within your energy limits. It’s a management tool, not a treatment. One of the main tasks is preparing an activity diary.

I know that the amendment has the best of intentions. However it states that there is “growing evidence” that pacing works. This is not correct. Geraghty’s pacing study, which I believe the amendment was based on, is not within the guidelines of evidence-based medicine that we use in Scotland. There was no control group, and the entire research was based on patient surveys.

To be fair, pacing is perceived by patients as the most effective coping strategy currently available. Leading Scottish campaigners who have M.E are using this technique, but they are the first to strongly urge us to acknowledge its limitations. The success of radiotherapy is not measured by patient surveys, and nor should pacing.

The second amendment calls for CBT to remain in the Scottish Good Practice Statement. I agree that at first glance, the Statement’s definition of CBT reads positively. These guidelines were written by an M.E friendly doctor, and CBT has supported people to cope with a range of conditions. But the Guidelines shouldn’t be read in a vacuum.

Scottish Regional NHS boards such as NHS Borders have confirmed that CBT is being used explicitly as a de-conditioning treatment, that is, to help patients address their behaviours in order to find a cure. Which brings us back full circle to M.E being treated as a condition that is all in the mind.

The Scottish Good Practice Statement also talks about financial support from DWP. It states that the patient has to provide sufficient medical evidence to support any benefit claim and so, quote, “The GP’s assistance is essential to provide support for the benefit.”

Yet 82% of GPs report that they have not had training and don’t understand the condition sufficiently, so they can not provide medical evidence. It has been suggested in debates leading up to today that my caution towards pacing is grossly misleading, and that it could lead to people not going to the doctors. To clarify – Pacing is not available from the GP and I think that patients are more likely to be put off by an inability to physically get to the GP or their GP not understanding what M.E is. This must change.

To conclude, M.E patients have been neglected for decades. We must stand shoulder to shoulder with the M.E community. We must tell the Scottish Government that we will not allow this punitive programme of supposed healthcare to continue.

Scotland should be leading the way. As well intentioned as the amendments may be, they will be detrimental to the M.E community. Please vote against them. Vote for my evidence-based motion so that M.E patients can receive proper research, care and perhaps, one day, a cure.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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3 Comments

  • Sue Sutherland 14th Sep '18 - 1:08pm

    This is amazing! When I read the title of the post my spirits were raised but then I thought no, those initials must stand for something else as well. Incredibly it was the illness that I’ve suffered from for 18 years which was being discussed.
    Huge congratulations Emma and thank you so much.

  • Lorenzo Cherin 14th Sep '18 - 1:33pm

    Respect for our colleagues with this important work, that’s Emma Walker and Sue Sutherland, new and vintage credits to our cause.

  • Congratulations to everyone involved. It’s really good to see members able to bring their specialist knowledge and contacts to bring forward this kind of really useful policy that would bring benefit to so many. So much of contemporary politics is focused is on Brexit and cross-party bickering, but it’s vital that other issues are not forgotten. It’s very pleasing to see such a well informed proposal with a meaningful conclusion.

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