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“Doctors said they’d report me to child protection”

Edinburgh mum Karen Gray believes cannabis oil saved her son’s life; and is going to great lengths to help other families access it too, as Andrew Mernin reports.

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Earlier this year parents from 10 families headed to Westminster to deliver a giant, £230,000 invoice to the government.

The amount reflected how much they had spent on buying vital cannabis medicine for their children.

Among them was Karen Gray, whose son Murray (pictured), seven, has a rare form of epilepsy which she has treated using cannabis oil.

This was her second trip from Edinburgh to the capital with the campaign group End Our Pain.

The first saw health secretary Matt Hancock face a grilling from her and other parents desperate to access cannabis medicine on the NHS.

He acknowledged the struggles many families are undergoing in accessing medicinal cannabis but, says Karen: “He’s done absolutely nothing since. He said he knows that we can’t wait several months and said he would do something to help us. This was back in April.”

Karen, second from right, with fellow cannabis medicine campaigners in London

Karen, who is currently spending £1300 per month on cannabis oil, continues to protest.

She recently told the press that she and other mothers planned to carry out a hunger strike outside Downing Street; as families remain locked out of cannabis medicine prescriptions, despite them being legal in the UK since November 2018. Theses plans remain on hold until after the general election.

Karen’s motivation is far from merely financial; she wants other families to benefit from the type of remarkable results seen in her son, which she firmly attributes to cannabis oil.

Murray seemed perfectly healthy as a baby, then at age two doctors picked up a delay in his speech development due to a ‘micro deletion’ of a chromosome.

Epilepsy was thought to be a related problem; but initially manifested as only one seizure per year. This then doubled – and doubled again – then increased with worrying speed.

In December 2017, a then-five-year-old Murray had 12 seizures. He was diagnosed with Doose Syndrome, an epileptic condition in which seizures can be frequent and involve the abrupt loss of muscle control, causing children to fall to the ground, often resulting in injury.

“He had just started school in the August, and by December had learned to write his name. Then Doose arrived and by January he was having 12 seizures a day.

“He was put on anti-epileptic medication and we started seeing all types of seizures – absences, drops, myoclonic (brief, shock-like jerks of a muscle or muscle group). He was put on various medications and nothing worked.”

At its worst, Murray could have up to 600 seizures per day.

“The steroids made him put on two stone of weight in three months and he looked like a different person. His best friend at school didn’t even recognise him and was scared as he looked so different.

“He was also given ketamine as a rescue drug for a week but that didn’t work at all. He was just basically out of it.

“I thought ‘oh my God, they’re giving my five-year-old son horse tranquiliser’ but you just have to trust the doctors because he was in such a bad way.”

Other drugs came and went from Murray’s daily routine without having the desired effect.

Then Karen took inspiration from a fellow mother who had also struggled with the impact of epilepsy on her young son.

“I read the story of Hannah and little Alfie, and how his seizures were reduced with medical cannabis, and decided I needed to go to Holland to get some for Murray.”

Joining forces with two other mums of children with Doose Syndrome, she headed across the North Sea in search of a doctor’s prescription.

But mid-trip she received a call from Murray’s neurologist to say a trial of the CBD drug Epidiolex had been secured back in Scotland.

Although welcome news, it ultimately proved a false dawn in terms of giving Murray the normal childhood his mother craved. At the time, alongside his seizures, Murray also had a problem with red blood cell production and had to undergo several transfusions.

The seizures during the day stopped on Epidiolex, which was a massive breakthrough, while he still had some through the night. But he was also suffering chronic diarrhoea.

“I was getting calls from his school two or three times a day to go and change him, but it was a side-effect we were willing to put up with because at least he was able to get up and go to school for a few hours.”

Within months, the daytime seizures had gradually returned, culminating in a particularly bad attack while on holiday at Center Parcs.

“He was rushed to hospital in Edinburgh and it was truly awful. There was nothing they could do; his muscle tone went, his breathing went and he was basically lying in a bed getting tube fed in a vegetative state. I don’t even think he knew we were there.”

This time Karen did get a prescription for cannabis medicine from a Dutch doctor – not exactly with the full support of Murray’s doctors.

“They said if they knew about it they would have to report me on child protection grounds, which was fair enough. They also said they feared that I could be doing long-term damage because of the THC.

“But by this point I had done so much research and spoken to so many other parents that I knew that it was a tiny amount of THC that they gave to kids in places like Canada. I just knew that this was something I had to do. I had no choice.

“I brought it back and gave it to him behind the curtain at the hospital, as I didn’t want to get anyone else into trouble.”

At this time, age six, Murray had been brought out of an induced coma designed to “reset” his brain using the epilepsy drug phenobarbital.

“I started giving him the medicine (Bedrolite) and I could see he was getting better. We got discharged and went home again but within a week he went downhill again.

“After a brain scan, the neurologist said he was in a bad way. But Murray wasn’t being tube fed in a vegetative state, he was walking about the neurologist’s office.

“I was sure that the oil was working as nothing else could explain it.

“We started giving him Bedica (containing a low level of THC) twice a day and he just got better and better and better.

“He had one seizure a week, then one a fortnight.”

At the time of writing he has been seizure free for seven months.

“The neurologist said that the syndrome can come and go – it can be really bad and get better.

“But I don’t know anyone with Doose that has gone this long without anything. He also said it could be the oils that we were giving him, but that he just couldn’t help us with a prescription.

“He said even if he wrote one, it would get blocked at a higher level and also that he didn’t want to be the first to do so. The doctors are all scared to prescribe it as it’s going to come under their insurance and they just don’t want to take that risk.

“It’s really annoying because we can see what it’s doing for Murray. I don’t think it should even be up to one neurologist to write the prescription. They should come together and do it jointly for all the kids that need the oils.”

Medical bodies who have remained resistant to supporting doctors in prescribing cannabis often point to the need for more evidence.

“We’ve already had our trials and proven that this works. I think more trials will happen but they will take a long time.

“Epidiolex is a CBD isolate so you can do clinical trials on that. But with whole plant extract, there are so many cannabinoids that you can’t single them all out to do double blind placebo trials.

“I really want to see funding in place so that, if the NHS can’t write a prescription, there are funds so families can buy the medicine.”

The future prospect of an NHS prescription for Murray is uncertain.

In Scotland, says Karen, “there are GPs willing to write a prescription – and healthcare trusts that I have been told will not block it.

“Yet those GPs are not on the specialist register set up to manage medicinal cannabis access in Scotland. ”

In England, the challenge as Karen sees it, is more a case of the trusts blocking prescriptions from willing doctors.

Although a significant sum, the £15,600 per year cost of Murray’s medicine is a small price to pay for his newfound quality of life.

The seven-year-old is now attending mainstream school full time, and requires non of the cast of health professionals that used to be in his life.

“He’s had to redo everything because he basically lost a year and a half of his education but  he’s learning now, picking up the alphabet and learning to do new things.

“He loves playing with sand and Play Doh – lucky me! – and building train tracks, going climbing and going swimming. He had lost his confidence in the water but it’s building back up and he’s doing great.”

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Feature

You are what you eat

When it comes to CBD, most people think of balms and oils, but snacks containing the active ingredients are growing in popularity.

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When it comes to CBD, most people think of balms and oils, but snacks containing the active ingredients are growing in popularity. Cannabis Health finds out more.

Britain is a nation of snackers. With 66 per cent of the population snacking at least once a day, the appetite for new products is growing all the time.

And one of the largest growth markets is in so-called ‘healthy’ snacks, although some may feel this is somewhat of an oxymoron.

Nevertheless, with the way we eat changing – increasingly busy lifestyles mean more and more people are eating on the go – consumers are looking to get more out of their snacks than just something to eat.

Kale chips, rice cakes, protein bars – these have all risen in popularity over the past few years, as snackers look for something that offers them something in the way of nutritional value.

Research has found that 44 per cent of adults see snacks as a good way to boost their nutritional intake – and with only half of Britons getting their recommended five a day, healthy snacks play a growing role in helping the nation make healthier choices.

With a health-conscious audience keen to try new things and a variety of innovative – and tasty – foodstuffs available, it’s fair to say that CBD snacks have definitely found their time to shine.

Epicurium is a health food distributor based in Consett, County Durham, which has been selling innovative, on-trend snacking products since 2011.

Always keen to offer retailers and consumers something new, the site has been stocking a range of CBD products for nearly a year now.

Customer engagement manager Michael Ratheram explains: “Research has found that about ten per cent of UK adults have tried a CBD snack, and four in ten Millennials would be willing to try CBD in a soft drink, so the demand is obviously there.

“We sell two CBD-infused drinks brands – Leaf Life and Drink420, along with a baked oat bar called Nooro – all are very new to market as you’d expect.

“The market is still very much at the early adopter stage; a year ago, CBD may not have even been on shoppers’ or retailers’ radars – some will have likely have never even heard of it!

“Having said that, the products we stock have been remarkably popular from the get-go – with about 10 per cent of our customers stocking the range.”

As those familiar with CBD will know, one of its principal uses as a health food supplement is for stress and pain relief, and this is as true for snacks as it is for the more traditional oils and balms.

As Epicurium trading manager James Christie explains: “One of the reasons for the popularity of CBD drinks and snacks is the health benefit. People are using these products to relieve physical and mental pain, such as stress, anxiety and insomnia, and so they’re more than happy to swap a sugary, less functional drink for one that satisfies their thirst and gives them something back.”

Consumers’ growing sense of adventure and desire to be different also plays a part, with buyers always looking for the next big thing.

“Today’s shoppers want more than a standard can of pop and chocolate bar,” says Michael. “Instead, they are open to more adventurous ingredients and healthier versions of sugar laden or more mundane options.

“They’re paying closer attention than ever to ingredients and health benefits, demanding more exciting flavours whilst not compromising on taste, and this is all opening up fresh opportunities for growth in the independent sector.”

Of course, CBD is not without its issues – the comparison with cannabis still endures and many consumers are wary of infused products, with ongoing legislative issues adding to the confusion.

Michael says: “I think above all else, there’s still confusion whether or not it’s classed as an age-restricted purchase for retailers to offer, as well as some concerns around legalities due to a lack of understanding.”

James adds: “We find a lot of customers are concerned over certification and still associate the negativity of cannabis with CBD. However, with the novel food classification coming in in March 2021, we will finally see the grey areas removed, with 74 per cent of people supporting the guidance on the subject.”

Despite the concerns, demand for CBD products continues to grow, particularly among younger consumers and those more attuned with what’s on trend – a fact borne out by the types of retailers buying Epicurium’s stock.

Michael said: Our typical customers are likely to be the early adopters and forward thinking retailers –university campus stores, convenience stores in city centre/transient locations, online snack subscription retailers – it’s those agile businesses who want to keep ahead of the curve.

“Universities are always very eager early adopters of new and innovative products, as it’s the perfect fit for their consumer base; it’s new, it’s in the limelight and with Gen-z and Millennials leading the charge in healthy snacking, it’s the perfect item to stock.”

While CBD oils and balms are still popular, particularly for those looking for relief from physical pain, an increased focus on nutrition, combined with a stressed and anxious population in need of new ways to relax, mean CBD snacks may have found themselves in the right place at the right time.

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Enterprise and education – a CBD story

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Mike Peates, founder of Medivita

From selling personalised chocolates to CBD balms and edibles, Medivita founder Mike Peates tells Cannabis Health how his latest venture was inspired by his chronic pain.

As a salesman, Mike Peates was used to spending hour after hour in his car, travelling around 25,000 miles a year.

And when he stopped to set up his own business, making and selling personalised chocolates with company logos printed on them, he found the problem only increased, as he spent up to five hours a day standing.

“The final quarter of the year, from October through to January, would be my busiest time, and I’d be spending most of my working day on my feet,” he says.

“I already had chronic back pain from my years spent in cars, and, over the five years, I had the chocolate business, it just got worse and worse.

“It got to the point where I’d come home from work and I’d be lying on the floor for about an hour to try to straighten my back out. And then the next morning, it’d be very much a question of, ‘okay, how do I move to even just get out of bed?’.

“The pain was so bad; it was a question of doing every action in stages, like pushing a chair back, then standing up, then managing to walk and get out of the house and do a full day’s work. And I managed all this for a couple of years.”

It was a chance remark on a Facebook post that prompted Mike to look into alternative remedies for his pain – despite being a self-confessed sceptic.

He said: “I saw a post from an old school friend about a health food shop in Lincolnshire that was moving to larger premises in order to stock CBD products.

“I happened to be off work for a few days at the time and so I ended up in a bit of a Google wormhole, researching what CBD is and what it could be used for.

“And to be honest, I was the biggest cynic ever in regards to what I’d call ‘herbal medicine’ in inverted commas, I always thought it was just one of these fads people are joining up to more and more.”

However, Mike’s curiosity was piqued, and, having thoroughly researched what would be the best product to start with, he decided to give it a try.

“I must admit, the price was a little off-putting, and I was concerned it was quite an expensive way to try it and for it not to work, but then I thought, why not?

“So, I ordered some; it arrived the next day, and I told myself to be open-minded and give it a go.

“Well, I took a couple of drops and within 20 minutes, I could feel a huge difference. I mean, it wasn’t just like taking the edge off the pain; the pain almost disappeared. And that was just my first dose!”

Mike continued using the CBD – “it was just the case that it really, really worked for me” – while working on a project at a tech incubator hub in Basingstoke, where he lives. In need of a little extra cash, he began reselling the CBD he was buying online to family and friends, which was the catalyst for his latest venture.

He explains: “I got talking to my mentor at the tech incubator about it and said, ‘look, I’ve been doing this, I’ve sold about £700 in the first few weeks without even doing any marketing’.

“Now, he knows what he’s doing – he founded two businesses which he exited very successfully – and he suggested we sit down over coffee and have a chat about it all.

“So, one Saturday morning, we have that meeting, we came out and we decided we were going to set up a CBD business together.

“It wasn’t a quick process – it took most of the summer to actually choose a name and choose the branding – but by September we were ready and Medivita was born.”

Mike admits it took a while to get established, and both he and his business partner were keen to ensure they got the right product, which is where his own experiences proved invaluable.

“Because I’d taken CBD before, I knew what worked, but we went through about six or seven different samples of CBD oil before we before we decided on the one we now sell,” he says.

“We knew we wanted full spectrum (a variety typically high in CBD, with only trace amounts of minor cannabinoids, and very low in THC, the main psychoactive compound in marijuana). We knew we wanted it to be full plant and we knew that it actually had to work when I tested it – it actually had to deliver some benefit from taking it.

“To be honest, there were a few that I had which left me just feeling, ‘well, it’s okay, but it’s not great, it’s not just quite hitting the spot’. And supply wise, even a year ago it was actually quite difficult to find people wholesaling and white labelling (the practice of putting a different brand on a product than that of the original producer). I think in 12 months that has really, really changed, and it’s now a lot easier to find wholesalers and white labels.”

Since then, the business has gone from strength to strength, but Mike is keen to stress that Medivita is not simply about selling a product – he works with a number of groups to help them understand the potential benefits of CBD.

He explains: “We sell online and we sell quite a lot locally, but we also do a lot of work in the local area with the Basingstoke Disability Forum, doing talks at their events, to educate people.

“That’s why we closely follow the likes of Professor Mike Barnes and Dr Dani Gordon with what they do. It helps to keep ourselves up to date with what’s happening, but it’s also useful to have that knowledge when people ask us, not simply about our product, but about CBD levels and THC levels and the endocannabinoid system, and so forth.

“We want to become people who consumers can trust, through knowing what we’re doing so that we can give best information and let people make a really informed choice, rather than just buying the cheapest bottle on the shelf.”

Mike is aware of the cynicism surrounding the use of CBD as a food supplement, but, as a former sceptic himself, he is able to relate to a level of mistrust.

“When we’re talking to disability forums and the like, we are met with quite a bit of resistance – which I understand,” he says.

“We do find that because a lot of the people we speak to are on a full regime of medication, they can be quite reluctant to try something new. I remember one lady in particular from when we attended the Chronic Pain Forum, who we’ve just had a testimonial from.

“In January, I went to a meeting and met her, and in May, she bought her first bottle – so that was four months from me seeing her to her deciding to buy some. 

“And you know, she had exactly the same experience as me; as soon as she tried it, she was sleeping better, her pain was better, she’s a lot less stressed. And she wrote and told me, ‘You know, I was a cynic, when I saw you that night and I didn’t believe it’.

“So, we can definitely turn people’s opinions around, but we still meet with resistance.”

As for the future, Mike hopes to see more clarity in the industry, giving consumers the ability to make informed choices.

He said: “My vision, as a consumer as well as a seller, is getting to the point where consumer confidence is there, and I don’t think it is at the moment. I think that’s why some CBD businesses struggle, because we need clarity of labelling, we need clarity of what’s in the bottle, backed up with the lab reports on websites – very much like with alcohol, where, if you go and buy a bottle of wine or a bottle of beer, you can tell how much alcohol is in it.

“I think we need to get to that sort of standard whereby a bottle of CBD tells you exactly how much CBD is in there and how much THC is in there, so that people can make that informed purchase.

“If things continue as they are, then we may get to a position where a lot of CBD is synthetic, made by the pharmaceutical companies and that, from a consumer point of view, isn’t possibly the best way forward.

“In the industry, we know that the natural product is the one that works, and that should be what’s being promoted to the consumer.”

Whatever happens within the industry, Mike says Medivita is here to stay: “We’re quite small at the moment, I make no bones about that, but we’ve got plans to grow.

“We’re not in it for the short term, we’re in it for the long run; we’re not just interested in making a quick buck overnight.”

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Could CBD really boost fertility?

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Cannabis Health reports on cannabis oil’s rising prominence in the lives of people hoping to start a family.

With data showing that around 1 in 7 couples in the UK struggle to conceive, and alternatives such as IVF proving costly, many couples are keen to try alternative methods to help them on their journey to parenthood – including CBD oil.

While there may not be much official guidance and advice surrounding the correlation between CBD oil use and enhanced fertility, some studies suggest the oil could play a role in increasing fertility in couples who previously struggled to conceive.

This shouldn’t be confused, however, with the intake of Tetrahydrocannabinol (THC) through smoking weed, which is shown to have damaging effects on fertility. Previous studies have shown that smoking cannabis can result in reduced testosterone levels and poor sperm count and mobility, making it much more difficult for men to conceive naturally.

Research into CBD and fertility is emerging, with early studies, plus anecdotal evidence from patients showing a potentially positive link.

Firstly, let’s talk science and hormones. Studies have suggested that CBD oil can play a vital role in hormone balancing for both men and women, aiding in the success of conception.

Researchers at the Paediatrics Department at Vanderbilt University said: “The life of the egg and the beginning of a pregnancy, depends on a healthy endocannabinoid system.”

Elsewhere, in the paper ‘The role of the endocannabinoid system in female reproductive tissues’, researchers state: “While the ECS is known to modulate pain and neurodevelopment, it is also known to impact the female reproductive system.”

Various other papers have also indicated a positive correlation between a balanced ECS and improved fertility, in particular the benefit of a specific amount of the endocannabinoid anandamide.

In women, high levels of anandamide – a type of endocannabinoid found in the body – occur at ovulation and are associated with a successful pregnancy, where low levels or a deficiency can be detrimental.That’s where CBD can begin to have an impact, boosting anandamide levels by preventing its breakdown and supporting successful ovulation.

However, timing is everything for in this relationship. Low levels of anandamide are required during embryo implantation, meaning use of CBD after conception may have a negative interference with the pregnancy.

Cannabinoid receptors have also been found in female ovaries, including granulosa cells or follicles cells of secondary and tertiary follicles.

According to researchers from the University of Naples, Italy: “Cannabinoid and adrenergic systems coordinate together oviductal motility for normal journey of embryos into the uterus.”

Researchers in Canada also found that CBD can have a positive impact at the very start of conception, linking female sexual arousal to activity in the endocannabinoid system.

Meanwhile, research conducted by Dr. Hans Hatt at Ruhr University in Germany has found a link between CBD and the impact on male fertility.

The study found that a receptor (GPR18) previously thought to be part of the ECS is also present in sperm cells, providing a link between cannabinoids, the ECS and fertility.

Evidence suggests CBD may play a key role in an essential biological process for procreation called the acrosome reaction.

When the GPR18 receptor in sperm cells is activated, this acrosome reaction is triggered, altering the sperm slightly to remove the protective ‘cap’ on its head and allowing it to effectively penetrate the egg.

While more research is needed, early indication is that CBD can positively impact the chance of conception in both parties.

Anyone who has had difficulty to conceiving will know that mental health can often have as much of an impact as physical causes.

Stress, anxiety, depression and other mental health conditions can have a hugely negative impact on fertility in both men and women by lowering hormones necessary for egg and sperm production.

Again, this is where CBD can help. It is widely reported this can directly activate serotonin (the ‘happiness chemical’) receptors, helping to boost mood and relax both partners.

CBD has also been found to regulate cortisol secretion, the stress activating hormone. Among other things, stress can also delay ovulation, making it difficult for women to attempt conception at their most fertile.

So, while research and guidance from industry bodies is still emerging, preliminary studies are showing a positive relationship between the use of CBD oil and fertility.

With ever-increasing sales, it seems more and more are opting to try something new on their journey to parenthood.

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