With the internet providing an expanse of ‘quackery’ jumbled up with facts, it’s becoming increasingly difficult for anybody to know what source of information can be trusted. This issue is especially apparent to us when we add unproven treatments into the mix. An unproven treatment is, quite literally, a treatment that has no reliable proof for its benefit as a treatment.
As a bit of background, the only way that a treatment can be moved from being ‘unproven’ to ‘proven’ is by conducting a series of controlled clinical trials that can confirm that it is more effective at treating something than a ‘dummy drug’ – called a placebo. This may seem a bit bureaucratic and time consuming but it is a necessary step in finding a truly beneficial treatment for any disease or ailment. Until a treatment has proven itself to be effective, it remains unproven.
So, to shine some light on the clouded situation of where the facts lie within unproven treatments advertised over the internet, a group of international researchers, collectively known as ALSUntangled (ALSU) was set up. ALSU’s most recent investigation was into a stem cell treatment that is provided by a German clinic called ‘X-Cell Stem Cell Centre’.
The X-cell centre is a clinic based in Germany that injects a person’s own stem cells – extracted from their bone marrow, back into them and claims that it can treat MND (as well as a large number of other conditions). To-date, no such stem cell treatment has undergone any clinical trials that have demonstrated their safety and effectiveness. The use of stem cells as a treatment is therefore regarded as an unproven.
ALSU therefore set out to find out if there was any truth behind the X-Cell Centre by investigating:
- The procedure that they adopt is scientifically sound
- The progression and opinions of three people who went to the X-Cell Centre.
From this, ALSU concluded that the data provided on the X-cell website is flawed and suggest either its removal, or for them to add a disclaimer to alert readers to its flaws. From the small number of people they followed, none showed signs of improvement. ALSU therefore concluded that until they demonstrate the safety and effectiveness through a rigorous clinical trial that they would not condone X-Cell centre’s protocol for people living with MND.
ALSU have published these results in a free to read article in the Journal ‘ALS’, which is written in an accessible way. ALSU also have a twitter page where people can suggest unproven treatments that they should investigate. More information on stem cells as a treatment for MND can be found on the stem cell pages of our website.
ALSU are not alone in their endeavour, as within the research development team a number of us (Brian, Belinda, Kate and I) are able to make sense of the claims of unproven treatments for MND. We provide people with the facts so that people affected by MND can make up their own minds about whether it’s an option they would like to consider.
If you are considering an unproven treatment and would like to know the facts about the information they provide, please contact us at firstname.lastname@example.org.
*update – The X-Cell centre has now been closed down by the German Government due to a loophole in law being tightened.