We are aware that a number of MND organisations, forums and people living with MND have received spam messages regarding a gentleman who claims that he can stop the deterioration for MND through an ‘electro medicine’ treatment. He urges readers of the message to reply to his email so that he can provide his proof. We are concerned about this as the mailer, a Mr Oholiav, is selling an unproven treatment for MND that could either be harmful, or non-existent – either a ‘snake-oil’ salesman or a complete hoax.
Trust in evidence not hearsay
We are aware of countless internet sites and scams that offer unproven treatment regimes that ‘prove’ the effectiveness of treatments through anecdotal evidence: through quotes from people who have taken the treatment; through articles in the media and other publications that have not been peer reviewed; case study reports; and documents written by ‘Drs’ that look credible at a glance. However, these treatments have not been through clinical trials, and so there is little proof whether a treatment is safe or beneficial.
A treatment is proven to be effective through carefully controlled clinical trials that test both safety and effectiveness. Trials have to be very carefully designed and carried out to ensure that the treatment is tested in the most unbiased circumstances possible, while giving the treatment the best chance of showing that it is safe and effective. If a treatment successfully shows this through trials, then treatments can be licensed for use. Clinical trial results can then be published in reputable scientific journals – the cornerstone of knowledge sharing in terms of research.
Without researchers publishing their results, and their studies being reviewed by their peers for integrity, we simply wouldn’t know what to believe. Allowing your work and your claims to be subjected to peer review is the internationally recognised way of evaluating research work and medical treatments. And by researchers sharing their knowledge and experience in a controlled setting – through publishing peer reviewed scientific journal articles- we can trust in evidence, not hearsay.
We recently created a new page of our website which discusses what a good ‘gold standard’ clinical trial is if you’re interested in finding out about this.
Sharing evidence: A chalk and cheese affair
As I’m writing this, we’re in the process of proof reading study overviews (abstracts) ready for the International Symposium on ALS/MND to be held in Sydney, Australia from 30 November to 2 December this year. It’s a real opportunity for researchers, clinicians and health and social care professionals to come together to share their recent study results – their evidence.
Flitting between reading the abstracts (which I must add have been peer reviewed), Mr Oholiav’s unproven treatment email, and our news that we’re now part of UK PubMed Central (read Belinda’s Blog entry published this morning for more information on this great news) is a real chalk and cheese affair. It’s a definite case of comparing how research should, and should not, be shared.
There are hundreds of researchers, clinicians, and health and social care professionals around the world dedicated to ending MND. These are the people who methodically set up their research projects; who place great care and attention in publishing their research papers in reputable journals; who attend the International Symposium on ALS/MND to learn about current avenues of MND research; and who share their knowledge with other researchers from around the globe through the appropriate channels. These are the people who have the right tools to unlock the secrets of MND.
We believe that exceptional claims require exceptional evidence. We believe too, that allowing treatments to be made available which have not been through the established clinical trial processes can encourage unscrupulous individuals to market ineffective treatments for financial gain and provide false hope to patients and their families.
We have already received feedback from a number of people affected by MND who have been emailed by Mr Oholiav who have informed us of their anger and upset over his correspondence. They have told us that they have deleted the email as they know it’s content is full of mis-information.
But we know that some people will want to explore unproven treatments as they see it, understandably, as a beacon of hope. This is why we urge anyone contemplating an unproven treatment to contact the research team here at the Association so that we can give them the latest information on unproven treatments to help them make an informed decision.
If you’ve received an email from Mr Oholiav, please let us know your thoughts by commenting below.