Stuart Murdoch, writer and director of the film God Help The Girl, and acclaimed lead singer and songwriter for the indie pop band Belle and Sebastian, has kindly left a message in our Guestbook. Our awareness and fundraising campaign exists in support of the work by Invest in ME charity on establishing a centre of excellence for translational biomedical research – a hub for proactive scientific research aimed at finding diagnostic tests & medical treatment options for people with myalgic encephalomyelitis – something long-awaited, as Stuart would attest to, having contracted ME as a university student at the end of the 1980s.
In 2006, Invest in ME (now aka Invest in ME Research) set out its stall as representing ME as classified by the World Health Organisation since 1969.
“We are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
We have links nationwide and also internationally. Invest in ME are one of the founding members of The European ME Alliance.
Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal “thumb-print” test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.
Invest in ME want to establish a national strategy of biomedical research into M.E. and establish a UK and European Centre of Excellence for biomedical research into M.E.
Please help make M.E. an illness which is properly understood and where adequate funding is provided for biomedical research into ME allowing treatments and cures to be found.” www.investinme.org
That same year saw their first annual international conference held in Westminster in London within walking distance of the Houses of Parliament. This is pertinent as the influence of politics on medical research into this illness is quite extraordinary and drove the need for patients with severe ME to set about crowdfunding the Invest in ME Research strategy ourselves.
So where are we now?
May 2015 saw the 10th Invest in ME Conference #IIMEC10 and the 5th Invest in ME Biomedical Researchers into ME Colloquium #BRMEC5 facilitating national and international collaboration.
The foundation research project of the centre of excellence is underway. The focus of the research strategy is on the role of the immune system in mediating the multi-systemic signs and symptoms of the illness. The starting point is the role of the gut microbiome in ME, as the gut is central to the immune system, and this is in line with research in this area for a number of illnesses.
The second project on the role of the gut in ME has been in the planning meanwhile, and we continue raise the further funds for this (£200k target).
An initial study of B-cells has been completed, prerequisite to the UK clinical trial of rituximab announced by Invest in ME in June 2013, and a paper has been submitted for publication. Early results showed potential value in developing the B-cell research, and this was included in the Invest in ME Rituximab Research Fund (current target £520k). The research is adding value to the current Norwegian Phase III Double Blind Placebo Controlled Trial of this B-cell depletion therapy. Great collaboration between two expert and pioneering research teams in UK (B-cell research and rituximab in rheumatoid arthritis) and Norway (oncology and rituximab in ME) respectively.
NHS reforms set back plans for the clinical arm of the centre of excellence proposed by the charity. PCTs were disbanded, creating changes in personnel and procedures. Invest in ME went back to the drawing board in their negotiations, while immunologist Dr. Amolak Bansal stepped in to provide samples for the gut research from patients under the care of his specialist service in Surrey. A post was advertised a few weeks ago by East Coast Community Healthcare for a consultant/specialist to lead the Norfolk and Suffolk Specialist Service. ECCH stated their intention to expand their involvement within research, and that this post will be pivotal to that development, with the specialist taking a service lead in relation to biomedical research by developing the appropriate external links.
Support for the education of the next generation of doctors includes funding intercalating medical students to be directly involved in Invest in ME biomedical research, proving so successful that the charity plans to fund two more medical students funded by the Big Give Christmas Challenge.
As Stuart so rightly said, it’s a long, hard struggle. But the future now looks a lot brighter for ME patients and families in UK and beyond, thanks to 10 years of unwavering conviction, dedication, perseverance and sheer hard work of this independent charity and its growing band of supporters. Invest in ME is entirely volunteer-run. No frills or fuss. This does mean that their work is not widely publicised, so please help us to spread the word. More publicity of the work being done = more support = more funds for the research = faster track to tests & treatments = better diagnosis and medical care = greater chance of recovery.
Stuart Murdoch’s own ME story is bittersweet. Falling ill in his early 20s, Stuart’s experience sounds fairly typical of young people with ME, and is a sad reflection of how poorly understood and neglected this illness has been for so long. Stuart’s parents had made him take piano lessons as a child and he formed a band with friends at school at the age of 12. The later long-term isolation enforced by the severity of his chronic illness led Stuart to express his feelings through song-writing. “Songs used to burst out of me when I was younger because I’d been through such a miserable time and had been in isolation for so long.”
Stuart found mutual support through empathy with others with ME and tells of how he and his friends compared themselves to the elderly characters in the enduringly popular long-running TV comedy series, Last of the Summer Wine, with the highlight of a good day maybe meeting up for an hour in the afternoon for coffee. This will no doubt resonate with many young people with ME who find they are rendered less physically and mentally able than elderly relatives.
ME can take a relapsing and remitting form, and significant improvement can feel like a full recovery. After seven years of illness, Stuart recovered sufficiently to return to a semblance of normal life, but what lay ahead was far from ordinary. “I was probably quite an embarrassing person to be around. You’re like a baby bird breaking out of an egg. I had a dream band in my head for years and years, while I was cogitating in darkness.” Stuart went on to form the hugely successful Belle and Sebastian in 1996, “a pop band that sprang out of infirmity.”
For years, Stuart kept his ME a secret. “I always hated telling people,” he says. “That’s one reason I lived on my own for so long, because I had this thing and I knew how to deal with it and I hated talking about it because it was such a waste of energy and time.” But this changed of necessity when Stuart suffered a relapse, and his willingness to speak with gentle candour about his lived experience of the illness has endeared him to the wider community of people with ME.
It’s a strange irony that there’s a popular perception that people with ME reject the suggestion that the illness is anything other than the physical/neurological illness classified by WHO, because they do not want the stigma attached to having a mental illness, when in fact, ME has become possibly the most stigmatised illness of the modern age, such that there is an almost audible sigh of relief and gratitude when someone in the public eye ‘comes out’ about having ME. When that someone is able to articulate their lived experience with such eloquence and genuine empathy as Stuart Murdoch then that is a gift to the global community of patients, families and supporters. Thank you Stuart.
Stuart published his first memoir ‘The Celestial Café’ in 2010. His first film ‘God Help The Girl’, which he conceived and directed, was released in 2014.
Many thanks to Stuart Murdoch, and to echo his words, “let’s get into the light!”