Part of the debate – in the Scottish Parliament on 2nd February 2023.
I am pleased to bring this debate on ME to Parliament today, and I am delighted that members of #MEAction Scotland are able to join us in the public gallery—I hope that they have managed to make it in—to hear what might be done to improve care for those in the grip of this debilitating condition. For ME sufferers, even making the trip here could worsen their symptoms, because the condition impairs the ability of cells to produce energy and increases post-exertional malaise—the worsening of symptoms following any activity. So, as I said, I am delighted to welcome them to the chamber.
More than two decades ago, the Scottish Parliament cross-party group on ME was formed, and, in 2017, the first millions missing event took place outside the Parliament and former MSP Gail Ross held a members’ business debate. In September 2022, #MEAction Scotland met the Cabinet Secretary for Health and Social Care, Humza Yousaf, who said that progress needs to be made and that he did not want to speak to us again in six months and “not have moved forward”. Sadly, it is now almost six months since that meeting and little to no progress has been made.
ME is becoming Scotland’s forgotten illness. Having met the team from #MEAction Scotland and having seen their sheer determination and passion as they continue to fight for targeted funding towards ME treatment by the NHS, I knew that I had to help in any way I can.
A constituent of mine, Jo Bussell Bruce, was an energetic, fit, and ambitious 28-year old manager in financial services with her whole life ahead of her. Jo is now 49 and has had ME for 21 years. She sent me her story, and I would like to read some of it out. She wrote:
“Like so many I’ve struggled with medical appointments over the years. I understand our doctors are overworked, underfunded and haven’t been trained properly on ME, but they must take responsibility for the toxic culture around ME, Long Covid and Fibromyalgia.
At the chronic pain clinic in Leith, I was recommended graded exercise therapy (GET) by a doctor who wouldn’t acknowledge my ME diagnosis. I explained that GET was about to be banned under the new NICE Guidelines.
Before that a doctor joked within earshot about my feeling the need to advise him of my ‘mental health condition’.
Before that a neurologist tried to downplay my diagnosis to ‘burnout’.
Before that it was another GP saying, ‘we call it CFS now, that’s the grown-up name’.
If you ask people with ME if they recognise themselves in my anecdotes, I guarantee they will say yes. Not 20% or 50%, all of them, and you’ll be flooded with far worse stories than mine. We face systemic bias within the medical community that needs education and consequences.
My GP isn’t uncaring, but we live in a time of evidence-based medicine. The Royal Colleges have refused to acknowledge that science has moved on and protects psychiatry’s hold on research funding. Unfortunately for people like me they simply have more resources and status in society to keep pumping out false narratives about our disease.
So, I had to become more knowledgeable about my illness than most doctors and they don’t hide their resentment about it. If you’re in any doubt, read the Reddit threads about ME or Fibromyalgia and you’ll see what they say of us and our diseases. They call us ‘malingerers’, ‘delusional’, ‘heart-sink’, ‘drug seekers’. Would you trust your loved ones in those hands?”
That statement is shocking and the story is heartbreaking, but what makes it worse is that it is very common among sufferers of ME.
Another constituent, Brighid Ó Dochartaigh—I hope that I pronounced her name correctly—got in touch and asked me to share her story to highlight this important opportunity for MSPs to stand alongside people with ME and call on the Scottish Government to implement the recommendations of the stakeholder report that the Government commissioned, which was produced last year. Brighid said:
“I am one of the more than 21,000 people in Scotland living with ME and one of the far too rapidly growing number of people who developed ME because of long covid. I was too sick to work for 13 months and lost a significant amount of income in that time. I’ve been left so ill that I can only work half time, from home, which has significantly altered my working role and I have no guarantee that my employer will facilitate me continuing to work remotely in the long term.
I’m too ill to socialise with friends, to travel, to visit family, or do most of the activities I love. Up until Covid and ME I regularly did fieldwork in remote areas of the world as part of my job as a geologist, and I was an ultramarathon runner. Now I can only walk for 20 minutes before having to stop, rest, and go home. I don’t think anyone would want my poor quality of life. It is unrelentingly hard to live like this, and there is no medical or social support.
In November 2020 I was referred to the NHS ME/CFS clinic in Edinburgh. The specialist physiotherapist and psychologist at the Edinburgh ... clinic were supportive and offered me all the help they could, but they had nothing to offer to help me get better—only to stop me getting ... worse.”
It is disappointing that there has been little progress in Scotland with how ME is diagnosed and managed, despite best practice guidance being available on how to support and treat patients, including guidance on the dangers of graded exercise encouraging people to “push through” symptoms.
As I said, I am here to make sure that the voices of sufferers are heard and that we amplify support for #MEAction Scotland’s campaign. I hope that members who take part in my debate will all help to raise awareness among other MSPs and the wider population. I am delighted to see so many people in the chamber after First Minister’s question time.