Myalgic Encephalomyelitis

Health Secretary assures ME sufferers that she believes them and urges them to contact  #MEAction Scotland

Catherine Calderwood, Jeane Freeman, Emma Harper and the Public Petitions Committee in session at Holyrood.

By Lizzie Healey

Patients with ME – Myalgic Encephalomyelitis – are fed up to the teeth with doctors telling them that no such medical condition exists.

Now Emma Shorter has lodged a petition with the Scottish Parliament on behalf of #MEAction Scotland following a review of treatment of the 20,000 plus people with myalgic encephalomyelitis.

In previous written and oral evidence, the parliament has been told about concerns regarding the consistency of treatment for ME sufferers across health board areas.

And about the training and education materials, about the efficacy of cognitive behavioural therapy and graded exercise therapy, and about the level of investment in biomedical research by the Scottish Government.

At this hearing, Jeane Freeman, the Cabinet Secretary for Health, was accompanied by the chief medical officer Catherine Calderwood and Elizabeth Sadler.

Jeane Freeman said: “I start by making a fairly fundamental but important point to people who live with ME, which is that I believe you.

“I believe that ME is a disease that limits the quality of your life, I hear what you are saying to us, and your experience matters to me, as the cabinet secretary.

“I was pleased to meet the petitioner, Emma Shorter, and her mother, Janet Sylvester, to hear at first hand the impact that ME has on Emma’s life and on the life of her mother, as her carer.

“It was very helpful to me and I want to make progress and to make life better for people such as Emma who live with the condition.

“There is clearly a lack of evidence about what causes ME and, from that, how to treat ME. We need more research into the condition.

“The only way to build an evidence base that can inform treatment options and the development of service is by enhancing the research base.

“The Government does not initiate research, but we can and will work with the ME community to try to enhance the research base.”

Ms Freeman said that over the past 18 months, Scotland’s first national action plan on neurological conditions was being prepared in co-production with partners and stakeholders, including people who live with neurological conditions, their carers and their families.

She added: “The five-year plan is wide ranging and has been welcomed by Scotland’s neurological community. We have engaged with the ME community and feedback has been considered by our national advisory committee during the draft plan’s development.

“Given that the plan is broad and aims to make improvements for everyone who lives with a neurological condition, it does not include condition-specific measures.

“However, we will continue to take on board any feedback that we receive through the consultation process. The consultation is open until 8 February, and I encourage people to continue to participate in shaping the final plan.”

She said the Scottish Government would continue to work closely with others, including the third sector, to support the work that they do for people who live with ME.

“In recent years, we have invested just under £0.5 million in funding towards that purpose,” the Health Secretary added.

Emma Harper MSP, deputy convener of the Health Committee, said: “My sense is that they have a very strong feeling of not being believed and, as a consequence, being given treatments that make things worse and compound the already challenging circumstances in which they find themselves.

“You mentioned the national action plan that was recently published by the national advisory committee for neurological conditions but, as the petitioners note, there is no data on the current prevalence of ME in Scotland. Do you believe that the national action plan can be relevant to people with ME, given that there is such a lack of data and a lack of understanding of the illness among neurologists?”

Jeane Freeman said she thought the current draft action plan could be enhanced by the contribution that #MEAction and people who live with ME could make to the consultation.

This would assist the government to understand better what was needed. I completely take their point about the absence of data and research on the subject, but the action plan is not designed to be specific to any particular neurological condition. It aims to identify a common set of actions that should be taken that would assist people who live with a neurological condition, regardless of what the condition is.

She added: “As the action plan is developed, I would expect people who live with ME to say, ‘That set of actions is fine and it works for us, but you’ve missed these other needs that are specific to us.’ We would want to look at that and to work with them to see what more we need to do.”

She admitted there was an absence of research and that the Government would want to look at what it could do in that regard – “The absence of data means that it is right that we should work on the basis of the lived experience of ME sufferers. That is why I need to hear from ME sufferers so that they can input into the consultation on the draft action plan.”

Elizabeth Sadler said the government estimated that there are around 20,000 to 21,000 people in Scotland with ME – “so it is a disease that is prevalent across the country”.

The Convener, Emma Harper, said: “We are talking about a condition that I was aware of 30 years ago. There was a lot of scepticism and a lot of unhelpful commentary on it in the 1980s. I worked with a colleague who had the condition, and it was evident to me that it was a significant problem. Why is it the case that, 30 years on, ME sufferers are almost still at the point of proving that they exist, because they do not appear in the data?”

Dr Catherine Calderwood, the Chief Medical Officer, said she first came across people with ME a long time ago—in her case, as a junior doctor in Glasgow, when she did a regular clinic at Ruchill hospital in Maryhill.

She added: “It was very clear to me then that ME was a condition that was highly debilitating.  ME is a very complex condition. The World Health Organization defines it as a neurological condition, but it is a diagnosis of exclusion.

“People come forward with a wide range of symptoms including nausea and dizziness. Extreme fatigue is always present, which is not helped by any amount of sleep or rest. People can experience muscle pain, and in extreme cases people do not have enough energy to get out of the house.

“The range of effects on the person’s life is also wide. In the most severe cases, people can be bed bound, have extreme sensitivity to light and noise and have an extremely poor quality of life. Others are able to work and manage their illness.

“In scientific terms, ME is somewhat unusual in that there is no test, because there are no biological markers. We cannot do a blood test or an imaging test that will come back with a report saying, ‘This person has ME,’ and therein lies much of the issue.

“I think that that is why, in the many years since the convener and I first had contact with people with this very real and very debilitating condition, things have not moved on.

“We have no means of diagnosing ME except by exclusion, and we have no cure. We do not have a mechanism by which we can create medication or find a treatment through the usual modality in medicine. Because we do not know the cause, we do not have a way of researching how a cure could best be found.

“We are talking about something that we have been aware of for many decades without, it would appear, making much progress.

“I hope that, given the issues that the petitioner has highlighted, we in Scotland may be able to start to move forward rather than saying that this is something that cannot be done.”

Helensburgh-based Tory MSP Maurice Corry asked Ms Freeman to “ensure that adequate resources are made available to the information gathering group so that we get as much data as possible on the prevalence of ME in Scotland and to ensure that no stone is left unturned?”

Jeane Freeman assured him: “Yes, we will. As Ms Sadler said, the draft action plan contains a commitment to improve data collection and the sources of data. When the draft action plan becomes a plan, the commitments in it will be resourced.”

Leave a Reply