Concern over unproven therapies
We have recently become aware of companies and clinics advertising experimental, unproven treatments that claim to cure or mitigate Parkinson's. Although huge progress is being made in Parkinson's research and medicine, there is at this stage no evidence at all for the safety or effectiveness of any such cures and you should be very careful indeed if considering such approaches.
Our Research Officer, Dr Kevin McFarthing, writes:
On behalf of the branch committee, I'm writing to you to let you know about some treatments for Parkinson's that may be unsafe, and attracting patients in the Oxford area.
Many of us with Parkinson's keep a close eye on developments in potential new therapies. There is a lot of research under way to deliver new medicines with the correct approach to showing that they work, they're safe, and they are of the correct quality. This all has to be done to the satisfaction of regulatory authorities like the European Medicines Agency (EMA) in Europe, the Food and Drugs Administration (FDA) in the US, and the Medicines and Healthcare Regulatory Agency (MHRA) in the UK.
We look for hope, and this drives some people to seek treatment outside the medical mainstream. One area where this is prevalent is the use of stem cells and extracellular vesicles (EVs). Clinics in the US and the Ukraine and now operating in the UK offer such treatments, claiming to halt or reverse the progress of Parkinson's.
As far as we are aware, none of these procedures have data to support efficacy, safety or quality. They often cite success in individual cases, but these cannot be judged as representative of the whole treated population and may well be due to the placebo effect.
What should you do?
- Avoid treatments labelled "experimental" that aren't part of an officially approved clinical trial. If in doubt, ask about ethics approval for the trial.
- Beware of having to pay for experimental treatments claimed to be part of a clinical trial. Responsible companies never charge for these studies.
- Ask for peer-reviewed scientific papers proving their therapy is valid and safe.
- Always, always talk to your consultant before trying any unapproved treatments.
One company apparently attracting patients in the UK is Bermuda-based Wellbeing International. They are advertising treatment with EVs harvested from the patient's body fat and claim to be able to treat Parkinson's amongst other conditions. As far as we can tell, there is no published scientific data on efficacy or safety; or regulatory approval for their claims.
If you'd like more information, here is a useful article from the American Parkinson's Disease Association.