Wow – 6 months. That is a quality effort for not writing. I’d say I’ve been busy but that’s pretty much the standard in my life so it’s not really an excuse.
Why am I writing today and not in the last 6-months? A lot has happened – great stuff, not-so-great stuff but I suppose I’ve not really had a bomb put under my bottom until yesterday. Yesterday I was abused online after declining sales pitch. I was called stupid then uneducated. Told I fed on sympathy – that I liked being sick…. a barrage of abuse because I wouldn’t buy their product….
I am now so careful with who I share my diagnosis’s with. I’m so careful because my diagnosis’s turn me into a target for unsolicited advice and in the last few years, more concerning still, a sales target.
That’s right – people in my life, involved in pyramid selling (I think they call it something else now to shift the stigma – direct selling?) have tried to peddle me everything from an Ab Flex (because my issues are absolutely down to my exercise regime), to Isegenix (which is not smiled upon medically for people with bowel dis…. well, actually if you read the studies it not recommended for anyone, period) to Essential Oils (do I need to add a comment to this?) to the latest fad, CBD oil.
Let me preface this whole post by saying the following:
Natural medicine that works is just called “Medicine”.
As a long term patient – if something has the slightest possibility of helping with any of my symptoms, my medical professional tells me about it, prescribes it and I take it. That’s the whole story. There is no “big pharama” conspiracy with any of the doctors that I see. If there is something medically relevant, they tell me, I do it. As a self empowered individual I also do a lot of reading about emerging treatments and trends. Please understand there is a very big chasm between a “treatment” and a “trend”.
I started seeing press about cannabinoid oil – or CBD about two years ago. I read studies about how it had been applied to other inflammatory conditions and waited with anticipation to see the results for the Australian medical marijuana study on my main concern, Crohn’s Disease. The results were disappointing to say the least – with a low remission rate and inconsistent pain reduction from the blend that was used in the study – in fact the study was a double blind – and revealed some of the symptom relief reported was psychosomatic, because the people involved were so desperate for something to work, they believed it did – even though they were either on the placebo or clinically there was no change. Was it the right blend? Could there be another product that works better on our particular condition? I can’t tell you and right now the medical profession and regulators can’t tell you either.
I was disappointed – but not surprised. In the first two years of Crohn’s diagnosis we read every study – even the non-government funded – kinda crazy – could end up doing more harm ones. I was suffering tremendously. Every area of my life started to bend with the diagnosis and I was desperate. We printed out whole documents on studies that would require thousands of dollars and unsanctioned international travel. Thankfully Dr E was not new to this… what we were doing was the norm for desperate people. We needed something to work, anything. He knew that. About 18 months in. He put our latests hair-brained scheme down – and he said only this “if you trust me, I will get you well”. I knew he would tell me if there was anything medically relevant on the horizon, even if we had to travel to try the treatment. 10 years down the track I have experienced one of his longest clinical remission periods of just over 5 years. Clinical – so it’s not trying to eat my bowel and kill me, I still have most of the symptoms.
Cannabinoid Oil, or CBD or Hemp oil started being pushed heavily at the end of 2017. I was one of the emerging brands main targets being a sufferer of chronic illness who in the past had been forward about my diagnosis and treatment. I was approached by 4 brands in the space of 6 months – for a variety of reasons. To market the product (freelance, as a professional) – and to be a part of the sales team. I declined each of the offers – with no regrets.
It was boldly told to my face that I was “the perfect storm” to sell this product because I could lie about the change in my symptoms, sell it to other desperate people, and line my pockets. My health would still be questionable – but hey I’d be raking in the money so it should off-set that right? RIGHT? This particular person – I immediately cut ties with. She was telling people that this product CURED her arthritis. She was telling desperate people that an oil that was making her money cured an incurable and debilitating illness which is unfortunately part of my overall diagnosis. This was not only disgusting to me – it was the most disreputable thing that I had come across in my real life.
It was at that point – in February 2018, that I decided to educate myself on the product. I read studies and spoke to manufacturers of the product in a country where it was legalised, accepted and regulated. In the space of 3 months I learned a lot about something that didn’t really interest me. I can say with certainty that this treatment won’t work for me – because the percentage of THC required to offer symptomatic relief has a psychological downside in my person – I get anxious and paranoid when I ingest it. How do I know – well, if I’m 100% honest – I’d rather not go into those details, but it is based on fact none the less.
Let’s just pick this as a starting point for what I have to say. CBD or medical marijuana are in their infancy in Australia – we’re still learning about it. The government is trying to figure out what role they will play in traditional medicine – because the certain blends with certain percentages of THC have an undeniably positive effect on conditions like epilepsy or other seizure conditions as well as pain and nausea easing properties for those on some chemo treatments. I am not sitting here and saying that this stuff is bullshit – it’s not. The stuff that is going round commercially right now – that’s dubious.
Why? Why would I say that?
There is no one – no medical or government body regulating the product. Let me put this bluntly – when you buy from someone on Facebook or Twitter or YouTube, you have no idea what you are getting. All that’s on most bottles, lets say 70% of the ones I’ve seen in Australia, have only “pure refined CBD oil” or “pure hemp extract”. Cool, which Cannabinoid is it from – there are hundreds – is it a blend, which ones? How much THC is in it (this is the REALLY important bit)? And – the question no one wants to ask, where was it made and bottled?
None of this information is available on the product, the websites, through the sellers or on the packaging. Most of these products are actually breaking Australian Consumer Law by not disclosing the country of origin and having a poisons information listing – your swallowing it kids, you could have a reaction to it, then what? It’s just gross. Brand owners are deceiving desperate people to line their own pockets – the whole time when they are actually breaking the law. Wait, they are breaking several of them.
The percentage of THC is what makes this product legal – or illegal in Australia. That’s the only regulation we have at the moment, and this has been born through the studies carried out in Australia. The THC is important – it’s one of the main active parts of this new treatment. Too much and you’re breaking the law – not only that it stays in your system. If you have a regulation drug test at work you will be found out and fired. It’s that serious.
An independant study on the unregulated CBD oil sellers in the market discovered that 93% of the product – had no THC at all… THC one of the main active ingredients… was completely missing from the blend. There haven’t been enough studies or enough time to ascertain what hemp only oil (devoid of THC) will successfully treat. So it’s just being peddled as a “miracle cure”. Guys – if it was a miracle, my doctor would have advised me to break the law to get my hands on it – he probably would have helped me… My Doctor instead is telling me about the progress biological treatments and the small cell studies.
My doctor has never been more optimistic about my quality and quantity of life because of the advancements traditional medicine is making. Regulated. Tested, Trialed. I will never be cured – he tells me that to my face. But I will be ok.
What’s my message here? Read. Research. Trust yourself – not the account of someone who is going to make a dollar from your misery. Arthritis can’t be cured. Crohn’s can’t be cured, Epilepsy can’t be cured. If someone is in your face telling you that, they are lying to you, and it’s a dangerous, dangerous lie told to desperate people.
Australia will develop regulations on the retail of CBD products – it will be a pharmacy product that government growers provide. There will be different blends for different conditions. There will be different amounts of THC for different conditions. You will know where it’s made… how it’s made and where it’s bottled. There will be warnings about side effects and allergies on the bottle, like ANY reputable product. Will there be a Crohn’s blend? You know I hope so – every additional tool in the arsenal has the possibility of offering an individual relief even if that individual isn’t me.
Save your money – and wait till the regulations come in. Know what you’re putting in your body and where it’s come from and don’t have false hope over a product that your are being sold.