Unproven treatments have not undergone rigorous testing for their safety and effectiveness. They are also often not supported by any reliable evidence. The only drug proven to slow the progression of MND is riluzole.
People, or organisations offering unproven or ‘alternative’ treatments 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 reliable scientific evidence.
“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.”
- Ammar Al-Chalabi, Professor of Neurology and Complex Disease, King’s College London
Importance of clinical trials
To become proven, a new treatment must undergo a rigorous clinical trials process. The process not only tests whether a treatment works, it also ensures that the treatment is safe.
A treatment that has not undergone proper clinical trials:
- Lacks reliable evidence to support its effectiveness
- May have unacceptably serious side effects
- May be unsafe, or even speed up disease progression
- May not have a plausible reason for how it works in MND.
Some clinics offering unproven treatments may claim that they have performed clinical trials. Find out how to tell the difference between a good clinical trial and a poor one.
We would encourage anyone with MND who is considering embarking on an unproven treatment to discuss all the implications with their neurologist before making a decision.
Are complementary therapies different?
Complementary therapies may help a person cope with living with MND and relieve symptoms such as anxiety or pain. The therapist will not claim that the therapy can alter the progression of the disease. Examples include massage, aromatherapy and meditation.