Unproven treatments

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 licenced in the UK is riluzole, which slows down the progression of MND.

People or organisations offering unproven or ‘alternative’ treatments suggest that they will work better than riluzole. They often claim they can reverse or cure MND or significantly slow disease progression. These remarkable claims are often 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. Prof Ammar Al-Chalabi

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, and 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.

ALS Untangled

ALS Untangled is a free online tool that offers reviews of some off-label treatments by researchers and scientists. To read the reviews and listen to podcasts on unproven treatments by Dr Rick Bedlack, visit the ALS Untangled website.

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 or meditation.

If you have any questions about unproven treatments, please contact our Research Development team.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262