FAQs: The search for treatments

Questions about research including information on potential treatments for MND, including stem cell research and complementary therapies.

q. Is there any research on the reactivation of damaged neurones or is that definitely not possible? Can we stop the disease in its tracks?

a.   Within the bounds of our current knowledge, it would seem that the process of motor neurone degeneration is irreversible and that any treatments would be limited to preventing further damage.

As the first affected motor neurones start to degenerate in MND, the brain will learn to compensate for their loss so that initially there are no noticeable symptoms. The first symptoms will only appear when the number of motor neurones damaged is so great that compensation is no longer possible. Therefore, a significant number of neurones will have been lost well before somebody is aware that they have MND and can even begin to think about treatment.

In MND, it would seem that many abnormal mechanisms trigger the destruction, or “suicide”, of motor neurones and that once this destruction has been instigated it cannot be reversed. Adults are unable to repair or replace damaged nerve cells.

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q. What treatments are available?

a.  Riluzole (also known as Rilutek) is the only drug licensed for the treatment of MND and is approved for use on the NHS. It shows a modest impact on survival for people with MND.

More information on Rilutek is available from Care Information Sheet 9 .


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q. What about stem cells?

a.  

Stem cell research is a novel area of research that has fuelled hope of a treatment for a variety of conditions including MND.  Much of the excitement surrounding stem cell research arose from the idea that embryonic stem cells, which have the potential to grow into any type of cell, could possibly be used to replace diseased neurones. However, there are many unanswered questions surrounding the use of stem cells in MND. For example: How can we direct new neurones to make the correct connections? How can we replace motor neurones that may be up to a metre long when the new cells can only grow extremely slowly? Are stem cells safe? 

Although the use of stem cell therapy for MND may eventually be possible, the general perception among scientists and clinicians in the MND research community is that the research is not currently sufficiently well advanced. However, stem cells do have great potential for furthering our understanding of MND and for testing potential new drugs, as they could be used  to create living human motor neurones in the lab. Read more about stem cells in Research Information Sheet Q - Stem cells and MND .


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q. Have people with MND received stem cell therapies? If so, how do I learn from their experiences?

a.  We receive many enquiries about stem cell therapies abroad that people have heard about on the internet or via word of mouth. We understand that in the absence of an effective way to treat MND, people may be willing to try any new experimental treatment. If people ask our advice on these treatments, we don’t advise them to go or not to go, but we do stress that they discuss the clinical implications with their doctor before making any decision.

We are keen to support treatments where the benefits have been proven through clinical trials, and where we understand the scientific rationale behind the therapy. This is not the case here.

The information we receive from people with MND is confidential thus we cannot give details on individual cases. However, a number of people have chosen to publicise their experiences of stem cell treatments in the media.

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q. Is there any research into complementary therapies?

a.  

There are a huge number of complementary therapies available and unfortunately it would simply not be possible to investigate all of them. However, some nutritional supplements that are widely available from health food shops etc. have been investigated in biomedical and / or clinical trials. These include vitamin E, vitamin C and creatine - more information is available in Research Information Sheet K - The Use of Antioxidant Supplements in MND  and Research Information Sheet J - Creatine (91 kb) . None of the supplements tested have demonstrated any significant beneficial effect on disease progression.

Despite a lack of scientific research, many people living with MND find that using complementary therapies can help make them more comfortable and reduce stress. It is important to remember that such therapies are not a treatment or cure. Always obtain medical advice before embarking on any complementary therapy or supplement programme and only use therapists recommended by a trustworthy source.


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