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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:

Kevin McFarthing

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 EMEA in Europe, the FDA in the US and the 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?

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.