There are literally thousands of websites on the internet that make claims about amazing alternative or off-label treatments (AOTs) and even cures for MND but with little or no scientific evidence to back these claims up. This presents a real problem for people living with the disease who may want to try them. Are they safe? Will they help? Or are they going to cause more problems than they solve?
In 2009 Dr Richard Bedlack, Professor of Neurology at Duke University in the USA, founded ALSUntangled to develop a system of review for some of these treatments using the available evidence, to make it easier for people with MND and their families to make more informed decisions about them.Read More »
MND Engage was a one-day collaborative event, bringing together MND researchers and people affected by MND. The inaugural event was held at the Francis Crick Institute in London on 23 July. The event, organised by researchers Jasmine Harley, Giulia Tyzack and Helen Divine, and supported by the MND Association’s Research Development and Communications teams, brought together MND researchers from several UK laboratories working on MND in order to explore ways in which public engagement in MND research could be improved.
Dr Arpan Mehta, one of our Lady Edith Wolfson Clinical Fellows, and his team at the Euan MacDonald Centre at the University of Edinburgh have recently carried out a systematic review and meta-analysis of the pre-clinical literature (studies using animal models) to assess the therapeutic potential of targeting mitochondrial dysfunction in MND, examining if these interventions significantly affect survival in animal models of the disease, and determining the most effective time to begin treatment.
‘From antibiotics and insulin to blood transfusions and treatments for cancer or HIV, virtually every medical achievement in the past century has depended directly or indirectly on research using animals’ – from the Royal Society’s position statement on the use of animals in research.
We know that talking about using animals in research is an emotive topic. We appreciate that some people will never accept that using animals in research is necessary, and we understand that it is not our place to try and influence anyone’s opinion on the use of animals in research. The purpose of this blog is to explore how using animal models of MND can further our understanding of this devastating disease, and how animals make it possible for potential new treatments for the disease to move forward into clinical trials in people.Read More »
Is it possible that a drug that treats congestive heart failure could improve respiration in people with MND? Or that a drug used to treat cancer could reduce motor neuron inflammation and possibly slow progression of the disease? In this blog we take a look at drug repurposing – using a drug developed to treat a particular disease to treat another that is unrelated – what it is, and what it might mean for people living with MND.Read More »
In November 2018 the Home Office released a draft Guideline scope for Cannabis-based products for medicinal use in which they announced that specialist doctors (like consultant neurologists) on the Special Register of the General Medical Council will be able to prescribe cannabis-based medicinal products to some patients. Before this, the only cannabis-based medicines licensed for use in the UK were nabiximols (Sativex), used as a treatment for spasticity (where muscles are continuously contracted, causing stiffness or tightness of the muscles, interfering with normal movement and speech), in multiple sclerosis (MS).Read More »
The research team frequently gets asked about the effectiveness of alternative therapies and their use as treatments for MND. Here we report on a recent paper that looked at the effects of ashwagandha, or Indian ginseng, in a SOD1 mouse model of MND.
For around 3000 years Withania somnifera (WS), commonly known as ashwagandha or Indian ginseng, has been used in Ayurvedic and indigenous medicine around the world, and is thought to have powerful rejuvenating and life-prolonging qualities. But there is increasing evidence which suggests that the plant extracts (root, leaf or fruit) also have neuroprotective properties, and this has been demonstrated in several models of neurodegenerative diseases including MND.Read More »
In the last decade, the MND Association has invested millions in research within the UK and across the world. We are a leader in the funding and promotion of cutting-edge MND research and, with over 30 years experience of identifying the most promising projects, we only fund and support scientific and medical research of the highest quality and relevance to MND.
And the great news is, we are not the only ones!
The International Alliance of ALS/MND Associationshas 54 member institutions, in 40 countries around the world – from Mongolia to Mexico, Malta to Malaysia – who are supporting, funding, collaborating in and carrying out MND research, and/or offering much needed care and support to people with MND and their families.
All the institutions listed by the Alliance are shown on the map above. If you want to take a look at some of these, they are easy to access through the International Alliance website. Some of the websites are not in English but you can use the Google Translate Web tool to translate the entire site into English (or any other language).
So let’s take a whistle-stop tour and explore some of the latest research and support projects that other institutions around the world are involved in. The institutions I mention are shown on the map with a yellow pointer.Read More »
This is the final blog article in our trio of blogs that are looking at physical activity and MND. The first two have addressed the questions ‘did the amount of physical activity I undertook before my diagnosis cause my MND?’ and ‘can I continue with physical activity after my diagnosis, or will this make my MND worse?’
Despite the evidence reported by Visser and colleagues, which showed an increase of 6% in the risk of developing MND in people with high activity levels (discussed in the first of these blogs), there is limited evidence to support a relationship between physical activity and the development of MND, that is, what exactly is it about physical activity that would lead to MND-specific neurodegeneration. The available evidence tends to suggest it is more likely that there are other, as yet unidentified, factors associated with physical activity that might drive the risk. However, several credible explanations for how exercise could directly cause MND have been proposed and studied and we are going to take a more in-depth look at some of these here.Read More »
This is part two of our series of blogs looking at links between physical activity and MND. This article will look at whether or not exercise should be continued after diagnosis.
Exercise is widely recommended to the general population due to its benefits to health and wellbeing. It improves the cardiovascular, respiratory, musculoskeletal, and endocrine functions and leads to psychological wellbeing. Many people with MND specifically ask whether they can safely continue to exercise regularly without fear of accelerating their disease. At present, there is no firm evidence that exercise exerts a harmful effect, although avoidance of very strenuous activity would seem to be sensible. Low-grade, managed, exercise programmes may even be of benefit.Read More »