The only ‘proven’ treatment to slow the progression of MND is Riluzole. There are, however, many organisations offering expensive ‘unproven’ and ‘alternative’ treatments for MND.
We have worked with the organisation Sense about Science to help produce their ‘I’ve got nothing to lose by trying it’ information booklet so that people living with MND can make up their own minds about unproven treatments.
What is an unproven treatment?
Unproven treatments are treatments that have not undergone rigorous testing for their safety and effectiveness by means of a clinical trial. Also, they are often not supported by any reliable evidence.
People or organisations offering unproven or ‘alternative’ treatments may suggest that they will work better than riluzole. They often claim they can cure MND or significantly slow disease progression. These remarkable claims are not supported by any scientific evidence.
The MND Association co-funds an international group of scientists and clinicians, collectively known as ALS Untangled to investigate unproven or alternative treatments for MND. This group look for the evidence behind these unproven treatments for people living with MND concluding with their own recommendations.
These reviews are freely available and are published Open Access. You can download the most recent review on propofol here.
“Thank you for your support of ALSuntangled! Dr Bedlack et al. are doing wonderful work on behalf of people living with MND everywhere!” – Doug Hetzel, USA
A neurologist’s point of view
Association-funded researcher Prof Ammar Al-Chalabi explains his views on unproven treatments:
Many people with MND seek out unproven treatments because of the very difficult situation they and their families are in. My advice is that this is generally OK if the treatment is not harmful, is not expensive and is not obvious quackery. The difference of opinion between medical staff and people with MND mainly comes in the first part – whether the treatment is harmful. As doctors we are taught, “first do no harm”, whereas someone with MND will often say they are dying anyway so it makes no difference if the treatment is harmful because there might be a benefit. This is a powerful argument that can only be countered by the point that someone may have a slow form of MND and be shortening their life significantly or may greatly reduce their quality of life.
“I see people who are desperate, spending tens of thousands of pounds on treatments that are definitely pointless, like stem cell therapy consisting of giving an unknown substance intravenously at an unlicensed clinic. I see others who shun conventional medicine because they believe in alternative therapies, even though conventional treatments have a known side effect profile and alternative treatments do not. As medical staff we have an ethical obligation to provide clear advice in these situations, but I have not had a life threatening illness before and cannot say how I would react, so there is always a seed of doubt in my mind about whether I am doing the right thing.”
A person living with MND’s point of view
Charlie Fletcher is living with MND and explains her point of view on unproven treatments after reading the new Sense about Science booklet:
“Having been diagnosed with MND and confronted by the stark reality that there is no cure and incredibly limited medications available, was a hard pill to swallow. To then be bombarded by the media with advert after advert of extraordinary treatments and radical cures was overwhelming. Those with long-term illnesses tend to have a heightened sense of impending doom and a desperate need for hope so it is not surprising that many are swayed by these claims. I will admit that at times the little voice in the back of my mind suggests I might be overlooking the answer I’m after, but as a natural sceptic I am not likely to be tempted unless there is substantial evidence to support these theories.
“Whilst I can appreciate the draw of untested drugs and alternative therapies, I am not about to start licking trees on the off chance. However, medical research is an integral part of the search for possible treatments for diseases like MND and I am fully supportive of the incredible work being done. In my opinion, participating in clinical trials of drugs and methodologies is beneficial in the development of our knowledge of the disease and eventually a cure, and therefore, is something for which I would willingly offer my assistance.
“It is often difficult to separate the head from the heart, particularly for family and friends who are naturally driven by their need to make things better. The passing on of unlikely remedies and anecdotes for seemingly successful treatments, in my personal experience, is more of a hindrance than a help. Following all this advice can be exhausting, time-consuming and expensive, but more importantly it can create false hope, which can have a devastating effect especially when something doesn’t work.
“To my knowledge there is only one drug available and it is not even close to a cure; as far as I’m concerned, if the only drug that has passed its clinical trials and can be prescribed barely makes any difference, I am not likely to be convinced by the promises made by the latest, untested ‘miracle drug’.
“I find the information presented in this booklet an accurate and in-depth view of the realities of long-term, degenerative conditions and for this reason felt moved to add my contribution.”
The reason people grasp at straws is because the establishment can offer nothing better. Upon diagnosis it’s natural that the specialist tries to put on a brave face and mentions how well research is proceeding with modern techniques. A year later the patient has deteriorated but there’s been no further mention of research and the trips to the clinic simply chart the way down. How does the patient get anything out of all of this that is in any way positive? Surely it’s no surprise that people start to look elsewhere for help.
If the medical establishment want to influence patient mindset then they need to engage in the discussions that are going on and they need to give a voice of caution that is much stronger than ‘we didn’t invent it so it can’t be any good’ (which to be blunt is how the message can come across).
Much of the discussion, especially self testing and unproven treatments, happens on http://www.als.net/forum/yaf_topics15_ALS-Research–Treatments.aspx and if someone who was respected in the research community could get involved with that forum I think it would go a long way to keeping people’s feet on the ground.
I recently published my article on newly researched natural medicinal plants and their potential for treatment of ALS and other neurodegenerative diseases. It is the culmination of several years work, having studied ethnobotanical medicine in the search for something viable. Hopefully, you will find it an important topic. It is currently being discussed on several online forums related to ALS and MND in general. I wish you well, and that you share this information, should you find it interesting. It can be found at:
Daniel Gustafsson, Sweden
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