Misophonia treatment and the monetisation of our condition is a complex and challenging issue.
We all want to find something that genuinely works to ease the suffering and anxiety that misophonia can cause patients. It doesn’t matter who discovers it, or even whether they seek to profit from it. Relief for patients is the end goal.
The challenge is this…
Where do we draw the line between what we know can have some positive impact (and should be advertised as such) and what doesn’t?
How do we ensure people stay safe and get access to the right information?
This article in the Huffington Post by Shaylynn Hayes, of Misophonia International raises some important questions.
How can we prevent vulnerable people being exploited financially (or worse) at the hands of unproven, unverified misophonia treatments?
Right now the market is flooded with self-proclaimed misophonia treatments.
Gizmos, gadgets, magic quick-fix sessions with grinning gurus… you name it. It’s the Wild West out there and the Sheriff is most definitely on vacation.
There’s no independently verified proof that a lot of these so-called misophonia ‘treatments’ work… and yet the bold claims keep on coming.
“This could cure your misophonia!” and “just check out my testimonials!”
Here’s what worries me (and should worry you too).
We are not being sold something frivolous here: a pair of trainers that will make us run faster… jeans that will make us more attractive. We’re talking about the promise of a fix for a debilitating neurological disorder. That’s a very serious claim with serious implications. It affects people’s lives and wellbeing.
Desperate, often vulnerable people are looking for anything to ease their pain, or to dull the suffering of a loved one. And they’re spending their hard-earned money on placebos… and in some cases potentially harmful and traumatic misophonia treatments.
We need to get the right advice out there and give people honest information so they can make informed choices
For me we need to draw the line at data. Verifiable data.
Let’s try different things, lots of different things. Let’s take all the research and knowledge we currently have and try to find ways to help misophonia sufferers. Then let’s invite people onto trials and record the results.
But we need to have a code of ethics and do this right.
We are all striving for the same thing here. The best possible care and respect for misophonia sufferers and that means working together… but it also means challenging ideas and practices.
Something like this would be a start:
There is a clear ethical issue when individuals start charging people for unregulated, unverified misophonia treatment
This issue is compounded further if the marketing does not make abundantly clear that these treatments are unproven and as such may a) have no discernible benefit b) could cause a patient harm or distress.
This is not something we can afford to be lax on.
It doesn’t matter how well-meaning or reputable the person or person(s) offering the service is, as soon as money changes hands for treatment there is an immediate conflict of interest.
1. The wellbeing of the patient
2. The financial incentive
Financial incentive automatically creates a bias, subconscious or otherwise and in the absence of independently verifiable evidence the treatment works in the first place, this is unacceptable.
It is unacceptable because the patient has no way of knowing whether they’re buying from someone who’s interested in making money…. or an individual who genuinely believes in their misophonia treatment… or a combination of the two. In each scenario the outcome for the patient is potentially the same.
Without independent testing any information presented to the patient is both incomplete and tainted.
Here’s what I suggest we do:
1. Conduct independent misophonia treatment trials
If you’ve got a misophonia treatment that you want to share with others and maybe even turn into a legitimate business, great! Let’s take treatments which claim to have positive results and independently trial them.
2. Publish and share the results (good and bad)
If the independent trials show a positive result for a significant percentage of patients, great! Let’s share the results, conduct more research and work to make it even better. Didn’t work? Still great! A HUGE part of developing treatments is knowing what doesn’t work and trying to understand why. This is all vital data.
3. Work together to promote further misophonia research and understanding and help people make informed choices about possible treatments
Whether you’re a neuropharmacologist, a hypnotist, a cognitive behavioural therapist, a psychologist, an app creator, an audiologist, a researcher, a student, a writer, a parent, a daughter, a son, everyone is welcome on the journey. Let’s figure this out together.
We need a bit of a reality check here…
As health professionals, advocates, journalists, researchers, writers and individuals offering treatment, we have a duty of care to put out honest information that’s in the best interests of sufferers. There’s very little information about misophonia out there right now. As guardians of what little information there is, we have an opportunity to promote a culture that protects the vulnerable and values ethics, integrity and the best interests of the patient.
Let’s get the current data verified and ensure we’re not pushing potentially dangerous misophonia treatment. At the risk of going all Jerry Springer, we’re not just talking about adults (who maybe should know better) there are also children involved.
And as misophonia sufferers we also have a duty of care. We need to stay savvy and be wary of quick, desperate fixes. Yes, this is a desperate condition but dabbling in unproven apps, or blindly swallowing pills meant for other conditions isn’t going to drive us forward, it’s going to put money in the hands of cowboy profiteers who will use that money to self-promote and spread more misinformation which may damage more vulnerable people in the future.
There are some amazing people fighting this cause and we need to come together and pool our resources. I feel honoured to be working with a number of them including Dr Jennifer Jo Brout and Shaylnn Hayes, from Misophonia Research and Misophonia International. Like many others they work extremely hard to get this condition recognised and ensure more research is done in the field. I want to make special mention of Shaylynn here because I know she will probably get some stick on Social Media for her recent piece in the Huffington Post – a piece which seeks to protect people with misophonia and help further the cause. We should be celebrating people like this not vilifying them.
Let’s keep up the good fight.