Over 1,200 delegates from acround the world came to Scotland to hear about the latest progress in MND research. Here are just a few of the sessions we thought were interesting.
Gill Craig, MND Clinical Specialist, gave a talk about the use of the cannabis based drug, Sativex, in a patient whose pain could not be controlled by the other drugs recommended. At the moment, Sativex is only approved for treating spasticity in Multiple Sclerosis, so an ‘Individual Patient Treatment Request’ for Sativex had to be submitted to the Health Board for approval.
Sativex was then approved for this patient and within a few days of starting it, the patient began to benefit from it. More information about people with MND who have tried cannabis-derived compounds for pain control can be found at www.patientslikeme.com.
Many think there is an association with someone being ultra-fit and getting MND, especially with the number of high profile athletes who have been diagnosed.
Professor Dame Pamela Shaw discussed the conflicting evidence about the potential role of exercise on MND. For one thing, the ways in which fitness and exercise levels are measured appears to vary widely across different studies.
Presenting new research which uses a valid questionnaire, Pamela showed that there does appear to be a risk amongst the ‘very fit’, who have a genetic predisposition. It is of course advisable to be fit to safeguard against other, more common diseases.
A biomarker is a naturally occurring molecule, gene or characteristic by which a particular disease can be identified. This area of research in MND is looking for biomarkers which would allow the disease to be picked up at an early stage, and ideally, detect it before any symptoms appear.
Dr Michael Benetar from the University of Miami gave a talk about a study he has been conducting since 2007. By measuring neurofilaments (proteins which are released into the body when nerve fibres are damaged) in the blood and Cerebrospinal fluid (CSF) from families who are carriers of an ALS-associated gene, his team have shown a clear relationship between an increased level of these neurofilaments and the development of MND symptoms.
For people with the SOD1 mutation, an increase in neurofilaments could be detected 6-12 months prior to symptoms of MND appearing and as far back as 24 months in one person with the FUS mutation.
Professor Hiroshi Mitsumoto from Columbia University in New York, talked about his project on the development of a new functional rating scale for Primary Lateral Sclerosis (PLS). He referred to PLS - a type of MND - as the ‘Poor Man of MND’ and how it deserved more studies. He explained that the current rating scale (48-point ALSFRS-R) is too insensitive for detecting changes over time in people with PLS.
The new PLS rating scale has extra steps in it which allow the detection of small changes in different functions such as bulbar, fine motor and gross motor functions. As PLS has a longer survival time, often 10-15 years, compared to ALS, the new functional rating scale (the PLSFRS) will allow small changes to be detected which will be beneficial to the patient and for future research studies.
Caroline McHutchinson, a PhD student at Edinburgh University talked about the overlap between MND, FTD (Frontotemporal Dementia - a type of Dementia associated with MND) and other neuropsychiatric disorders. By analysing data from the Scottish MND Register, she has shown that a family history of depression and anxiety is associated with cognitive and behaviour changes in MND, further supporting the evidence that MND is not just a disease which affects motor neurones.
Further to this, Judith Machts from Otto-von-Guericke University in Germany, gave a talk about her work on memory deficits in MND. This is an area of research which hasn’t been studied in depth, and her work has shown that there is a decline in verbal memory in one third of patients 3-6 months after diagnosis.
We are often asked why it takes so long to make a diagnosis of MND. We can only say that because there is no specific test for MND, the doctors have to exclude all other diseases which might explain a patient’s symptoms. In a presentation, Dr George Gorrie and his collaborators investigated the patient ‘journey’ from symptom onset to diagnosis at Queen Elizabeth University Hospital, Glasgow, using data which had been recorded between 2009 and 2016. Their results explained some of the reasons why it can take so long for a diagnosis of MND to be made.
On average, it took almost six months before a GP made a referral to a specialist. Their study then showed that 73% of first referrals were made by GPs, but only 56% of these were to neurology – the remaining 44% were to non-neurology teams. These teams then had to make referrals to neurology once the symptoms had worsened – thus causing a delay.
They suggested that by increasing awareness of symptoms of MND in non-neurologists and other medical staff, the time to diagnosis may be reduced, and have hence developed a ‘Think MND’ leaflet for other health professionals.
More highlights from the Symposium are available on the MND Association’s research blog at www.mndresearch.blog.
Ahead of the International Symposium, in partnership with the International Alliance of ALS/MND Associations, we hosted an Ask the Experts session, which aimed to give people with MND and their carers the opportunity to hear from some of the world’s MND experts and to ask them questions.
If you’d like to catch up on our ask the experts session, you can view the full session below.
If you have any questions about the International Symposium on ALS/MND, or questions about the research we are funding, please contact our Research and Education Officer, Steven Karlsson-Brown, at firstname.lastname@example.org. You can also call us on 0141 332 3903.