The hidden side of clinical trials

Watch the AllTrials TEDx talk on YouTube

Learn more

Evidence matters to the public

Join us on 1st November at Parliament to make the case

Learn more

Plant Science Panel

Insecticides, biofuels, GMOs …

Learn more

'The Ugly Truth'

by Tracey Brown, director of Sense About Science

Learn more

Healthcare professionals' perspectives

Ammar Al-Chalabi

Ammar Al-Chalabi, Professor of Neurology and Complex Disease, King’s College London

"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. A way forward is an approach such as the Halpin Protocol, which is a system to allow relatively safe access to unproven treatments for people with life threatening conditions.

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."

Living with MND - Unproven Treatments