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Patient Voices: Margaret – “I’m too young to run out of options”

Margaret had run out of treatment options when a medical cannabis prescription gave her a glimmer of hope.

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Margaret has some quality of life again thanks to medical cannabis.

Margaret had run out of treatment options and had just lost her job due to Covid-19, when a cannabis prescription gave her a glimmer of hope.

“People talk about cannabis being a last resort, well for me it really was,” says Margaret, 39.

“You reach a point where you have very few treatment options left, and I’m too young to run out of options.”

Margaret was eventually diagnosed with hypermobile Ehlers Danlos syndromes (hEDS) at the age of 34, after years of being made to believe the pain was caused by anxiety and “all in her head”.

“It was a relief to get a diagnosis, I’d been sick for a really long time and they couldn’t find an explanation,” she says.

“But there are not many treatment options for hEDS. Physiotherapy is pretty much the only management the NHS offers, and then medication to treat the various symptoms. 

She adds: “I won’t bore you with the number of medications I’ve been through over the last 20 years.”

The condition causes chronic pain and crippling muscle spasms, as the muscles try to hold together weak joints. 

Having once been an athlete, Margaret’s symptoms have become more severe with age and now how active she is varies considerably from day to day. 

“Even after living with this for most of my life, it’s somewhat unpredictable in how EDS can affect me day to day,” she explains.

“Some days I can walk unsupported but can’t go very far, others I need a walking stick or crutches, and on the worst days I wish I had a wheelchair.” 

Among other conditions, Margaret also has gastroparesis – where the stomach can’t empty itself of food in the normal way – IBS and several food and chemical sensitivities. And her mental health issues including anxiety, depression and PTSD can be just as debilitating. 

“Trying to manage complex conditions is a full time job,” she says. 

Originally from New York state, Margaret’s doctors had suggested she try cannabis through the state’s medical programme, but knowing she was due to move to the UK where it was still illegal, she didn’t sign up. 

Arriving here three years ago with her British husband, taking the risk of accessing cannabis illicitly was never an option for her. In the extreme, being caught in possession of cannabis as an immigrant could result in deportation. 

Then at the beginning of the coronavirus pandemic last year she was made redundant from her job as a junior solution architect in the automotive industry, and her symptoms spiralled.

“I had a really hard time managing things after that,” she says.

“My pain got worse, my anxiety levels were increasing and my gastroparesis was flaring – everything was just really bad.”

When Project Twenty21 opened up for applications in the summer she signed up within the week, with her husband supporting her to help fund the prescriptions. 

Margaret

Margaret with her medical cannabis vaporiser.

“I could finally afford to try this, to see if I could get some quality of life back,” she says.

“But my journey to cannabis has not been a straightforward one.”

Margaret learned she was intolerant to the MCT oil carrier used in the medicines prescribed through the programme and struggled to find a strain which managed all of her symptoms. 

While CBD flower was good for her anxiety, it didn’t relieve her pain and indica strains helped her sleep better but weren’t suitable during the day. 

One product even heightened her joint pain, triggering a flare, while improving her mental health. 

“It was definitely frustrating,” says Margaret.

“I think a lot of people come to Project Twenty21 expecting an immediate result, but that’s not really been my experience.”

But cannabis did lead to a marked improvement in her gastroparesis and Margaret describes being able to eat fresh fruit and vegetables, without getting sick, for the first time in years.

“Being able to eat proper food again was a big win,” she says.

“Gastroparesis has been there in the background for the last 12 years. I’ve had to avoid fresh and raw food, have very small meals and go on a liquid diet for months at a time. For the first time in five years I can have a salad and not end up sick for three days later.”

She adds: “It’s definitely meant that I can eat healthier food, which will eventually have an impact on my condition because nutritional deficiencies have a huge impact on EDS.”

Since the beginning of the year, several new cannabis based medicines have been added to Project Twenty21, and six months on, Margaret has found the right medication combination to successfully manage her symptoms. 

“My mood, baseline pain levels, activity levels, focus, sleep quality, and digestion are all much improved and my gastroparesis is the most well managed it’s been in at least 10 years,” she says.

“I actually understand the epiphany of sorts many patients experience when their conditions are actually managed with minimal side effects. 

“But it took time and effort to find what works for me. You see so many success stories, but behind each of those was time spent finding which strains, strengths, and ingestion methods work for the individual.”

PLEA’s (Patient-Led Engagement for Access) Patient Working Group has been a huge support for Margaret throughout this time.

She explains: “Having that peer support helped me realise that there were other options if something wasn’t working. They’ve really been a great group of people to bounce ideas off and to try and figure out what to try next, they’ve even helped with things like learning how to vape.”

After joining when the group was launched earlier this year to ensure patients have a voice in the developing medical cannabis sector,  she recently took up a role on the organisation’s management committee to help drive their mission forward. 

“I’m excited to keep working towards ensuring there is a patient centred industry and advocating for NHS access,” she says.

“In the cannabis space, there can be a lot of competing motivations and it can get really overwhelming. Having a group of people around you, who share the same goals is important. It gives you a safe space.”

While cannabis patients are often subjected to stigma from others in society, Margaret says she has even faced push-back from other patients for accessing a prescription privately.

“I’ve had people yell at me and attack me for having the funds and being able to speak out about getting a prescription,”she says.

“There are some very strong opinions in the cannabis space about how patients should be able to access these medications, but every patient has their own story and it’s really sad when they attack each other. 

Margaret adds: “It’s important for us to work together, because we all have the same end goal, which is for patients to have access to medical cannabis.”

 

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group. Read Eppie and Gillian’s stories

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources 

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Medicinal cannabis improves quality of life, finds largest study of UK patients

The preliminary results from Project Twenty21 have been published.

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Medicinal cannabis prescriptions are being trialled to manage treatment-resistant conditions, including chronic pain and anxiety.

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Patients on Project Twenty21 report improvements in quality-of-life measures, and ability to manage anxiety, insomnia and depression with medicinal cannabis prescriptions. Bod Australia – one of the producers involved in the study – delves into what this means for medical cannabis.

The first findings from the UK’s largest ever medical cannabis patient study, Project Twenty21, have been published in the esteemed journal Psychopharmacology

These findings show that legally prescribed cannabis provides clinically significant improvements in the quality of life of patients living with conditions such as chronic pain, multiple sclerosis, Tourette’s syndrome, epilepsy, and Post Traumatic Stress Disorder (PTSD).

How does Project Twenty21 work?

Project Twenty21 is an observational study, established in 2019 by Drug Science, to provide a framework that pairs patients with specialist clinicians that are experienced with prescribing medicinal cannabis. The study gathers important patient data on the safety and tolerability of medicinal cannabis, while simultaneously improving patient access. 

To support and fund the study, five licensed medical cannabis producers including Bod Australia, have adapted the costs of their medicines to allow more people to afford them and therefore access medical cannabis. 

“We want to give people who suffer from chronic and severe conditions that haven’t had luck with conventional treatment options the chance to try something that could really alleviate their suffering,” said Jo Patterson, CEO of Bod.

Prospective participants were evaluated by trained clinicians and if deemed eligible, were prescribed medicinal cannabis. Patients enrolled in this study had at least two ‘failed treatments’ on their medical records, where commonly prescribed medications, such as opioids, had little to no effect on their ability to manage their conditions.

Participants’ health and progress on the medicines was assessed periodically using a standardised and validated questionnaire of health-related quality of life. This method is also used to study patients with other conditions, such as cancer, cardiovascular disease and dementia.

Findings from the study:

This is the first published Real World Data to be collected on medical cannabis in the UK. The major findings from the interim analysis of 678 participants show: 

  • Most patients in the study were prescribed medicinal cannabis for chronic pain, then anxiety, PTSD, multiple sclerosis, substance use disorder, Tourette’s syndrome and epilepsy.
  • Using medicinal cannabis led to a fifty percent increase in patients’ self-reported health and ability to lead a more normal life.
  • Significant improvements in patients’ ability to manage debilitating secondary conditions such as anxiety, insomnia and depression were also reported.
  • Patients are now able to avoid criminality with legal prescriptions, as many have felt compelled to turn to illegal use in an attempt to manage their pain/ life-limiting conditions.
  • Medicinal cannabis prescriptions provide an opportunity to reduce and stop reliance on widely available medicines, like opioids, that can come with serious side effects, including dependency.

Figure 1 from the publication summarises the primary condition for these individuals who received prescribed cannabis in this study.

“These results show that for some people with severe and debilitating conditions and who substantially poorer health, treatment with prescribed medicinal cannabis is providing relief and improving their health-related quality of life,” said Dr Adele Hosseini, chief scientific officer at Bod Australia. 

“Patient access to medicinal cannabis remains an issue in both the UK and Australia. As doctors and regulatory bodies are calling for more evidence, collecting real-world data from patients using medicinal cannabis in Australia and the UK will help build the evidence base required to support doctors and improve patient access,” Dr Hosseini added.

Despite medicinal cannabis being legalized in the UK in 2018, access for patients remains a challenge due to numerous conditions, including prohibitive cost and doctor support.

Professor David Nutt, founder of Drug Science commented: “A lack of clinical evidence has made it difficult for doctors to confidently prescribe legal medical cannabis in the UK. These new findings provide a major step forward, and help to clarify the benefit these medicines can have for thousands of seriously ill patients.”

Why Real-World Data?

Due to the challenges of studying medical cannabis through rigorous randomised controlled trials (RCTs), Project Twenty21 was set up to develop evidence using real-world data to assess the effectiveness and efficacy of medical cannabis.

Dr Hosseini explained: “While RCTs are still necessary, real world data helps support and guide research efforts by casting a wide net and catching data that might be missed by RCTs.”

More details on the study and results can be found in Drug Science’s announcement or by reading the publication in Psychopharmacology. 

About Project Twenty21

Project Twenty21 aims to create a structured body of evidence for the effectiveness and tolerability of medical cannabis for a broad range of conditions, while simultaneously allowing eligible patients to access affordable medical cannabis treatment. This project will provide evidence for NHS funding where the benefits of treatment with medicinal cannabis is proven to outweigh the potential risks

About Bod Australia

Bod Australia is a cannabis-centric healthcare company, specialising in the development and manufacture of medicinal cannabis, CBD and hemp products for a range of therapeutic needs. Bod provides pharmaceutical-grade CBD-dominant medicinal cannabis, produced under Good Manufacturing Practice (GMP), that are being repeatedly prescribed in Australia and the United Kingdom. Bod also provide a range of non-prescription CBD and hemp seed health and skincare products for general health and well-being in Australia, UK, USA, Netherlands and Italy. More information on the clinical research being conducted by Bod Australia can be found here: https://bodpharmaceuticals.com/clinical-research/ 

Disclaimer: Bod Australia has no control over which products are entered into the Project Twenty 21 formulary or are prescribed by its clinicians. Neither does Bod Australia have any influence over the study’s outcomes.

 

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“You don’t need cannabis to impact your endocannabinoid system”

Chief scientific officer at Endoverse, Simon Weissenberger reveals more about a complex and often misunderstood area of medicine.

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Psychologist, researcher and chief scientific officer at Endoverse, Simon Weissenberger, reveals more about a complex and often misunderstood area of medicine: the endocannabinoid system. 

The endocannabinoid system (ECS) was discovered in the early 1990s by Israeli scientist, Raphael Mechoulam, during his research on the cannabis plant and its effects on the mind and body.  

Although the system is inexorably linked with the cannabis plant, its function extends far beyond the plant. The ECS is thought to keep our body in a state of balance both physiologically and cognitively, however, most people have never heard of it.

A Manchester-based company, Endoverse is seeking to educate medical professionals and the general public about the benefits of the recently established field of ‘endocannabinology’ and demonstrate that there is more to this complex system than its association with cannabis.

Existing evidence suggests that endocannabinology could be a useful tool for treating various health conditions, including metabolic syndrome, diabetes, hypertension, anxiety, depression, obesity and other eating disorders.

Since launching in 2019, Endoverse has launched a training course that teaches medical professionals about the system and how they can introduce endocannabinology into their practice. The company is now rolling out a number of new services, including a post-COVID programme that aims to use the ECS to help people overcome the symptoms of Covid-19.

The company also has plans in the works for a new arm of the business which will develop solutions for monitoring the status of the ECS by measuring the level of endocannbinoids in the body.

Chief scientific officer at Endoverse, Simon Weissenberger

Cannabis Health: What is the ECS?

Simon Weissenberger: There are two main receptors that are known – CB1 and CB2.

In the fast-paced, high-stress society that we live in where people are always connected to their phones, we have an overstimulation of the CB1 receptor. This can be associated with anxiety, stress, as well as with things like looking for food or needing a dopamine hit.

The point is to have a balance and overall, in our society today, it’s better to keep CB1 under-stimulated rather than overstimulated. Some of the examples of what helps here, are things like polyunsaturated fatty acids found in oils like olive oil, hemp seed oil and CBD of course.

CB2 is more associated with the immune system which is something that isn’t straightforward or black and white. For instance, it’s not ideal to have an overactive immune system. If your immune system is constantly on the lookout, it’s going to start attacking yourself. This is called autoimmune disorder. 

CBD, for example, tends to lower immune function and that’s why it’s good for something like multiple sclerosis or other autoimmune disorders

CH: Why is the ECS important? 

SW: The ECS is important because it regulates so many of our physiological functions. 

The ECS is a relatively new discovery in medicine, but it is such a crucial component of everyday health because it regulates things like neural signalling, immune function and a whole variety of things like thermogenesis [maintaining a constant body heat], immunity, homeostatic regulation, hunger, general mood and even pain regulation.

It is a system which is in the background, but there are so many bodily functions, physiological functions and mental health issues that are intrinsically connected to it.

When we take common sense approaches to health and wellbeing like exercise, getting enough sun and diet, it is all intertwined with the balancing of the ECS. 

CH: What is the connection between cannabis and ECS? 

SW: The discovery of the ECS and its importance in overall health came about thanks to the cannabis plant, which has been both a blessing and a curse.

The legality of the cannabis plant varies around the world and it’s mostly illegal, so it gives the system a bad rep and people who are studying it are misperceived. Very often [researchers] are working for the cannabis industry and we have no problem with that whatsoever; we’re just trying to make it a little bit more scientific.

The big myth that we’re trying to debunk is that you need cannabis in order to impact your ECS. The basic fact is that the ECS is associated more with fatty acid metabolism in our body than it is with the cannabis plant.

CH: Aside from cannabis what other factors can come into play? 

SW: Exercise, diet and overall lifestyle all play a significant role.

We want to move the perception away from cannabis equalling the ECS, get the public to understand how other factors play a part, and then introduce certain health, counselling and dietary interventions to improve people’s wellbeing.

CH: What role do fatty acids play in the ECS? 

SW: The power that fatty acids have on our health is immense and they are essential for the ECS.

The ligands (fat) connect to the receptors and are the building blocks of the ECS; the ECS needs that fat to be built. 

We’re focusing on educating the public about the fact that fats and fatty acids are necessary for human health. There are these misconceptions that low fat diets are good for you. But most people don’t know that there is a biosynthesis effect, so even if you are eating a low-fat diet, your body is producing fat and saturated fat. 

CH: Your primary focus of research is ADHD. Where does the ECS fit into this area of your work?

SW: There were claims made in the past about omega 3 supplements, and how they help with ADHD. There is now research to confirm that. If you supplement with omega 3 and you take your normal medication, you will have a better outcome than somebody who, for example, is just taking Ritalin and not eating well.

Changing diet and integrating exercise are examples of things that people can do to improve their symptoms of ADHD. We now know that these factors are working on the ECS. 

CH: What is the potential of the ECS moving forward? 

SW: There is definitely a huge potential and I see it primarily on two fronts.

Number one is the research aspect, so understanding in greater depth how this complex system works and how we can improve our health, while being cognisant of the ECS.

The second is just as important, which is delivering therapeutic interventions for people that are aware of the ECS. It is a shame that it has been ignored for so long.

CH: Why has the ECS flown under people’s radar for the past three decades? 

SW: One of the main reasons is that its discovery is so recent. In medicine and science, you work on the shoulders of giants. We knew that there were some receptors that connect with cannabis, but then all of a sudden, we’re hearing that these are actually fundamental. It’s like discovering a hidden treasure which you have been trained not to look at.

We know more about the ECS now, but it is still not in the paradigm of medicine yet. The thing that is hard to get with the system is that it’s all-encompassing, but it’s also subtle. 

 I’ve spoken to medical doctors who say you need to decondition from standard medical training which is based on very black and white thinking. You need to get away from that and start thinking more holistically and that when it starts to make more sense. 

CH: What do Endoverse’s training courses for medical professionals entail?

SW: Our training focuses on the physiology of the ECS and helps medical professionals understand what is regulated by the ECS in the human body, in what way and what the impacts are on the functioning of the system.

CH: Who can take the courses and what can participants do with the qualification?

SW: People who take our courses should already have some background in either medicine or counselling; something with a scientific background. 

Through learning about the ECS, you gain the knowledge you need to integrate endocannabinology within your field. 

For example, a client who is in counselling which integrates the Endoverse model would have blood tests, they would have a diet log, and we would take all that into account within the framework. It could be somebody who has low self-esteem along with some health issues. We would work with their diet and the ECS and maybe introduce CBD as well.

CH: What projects do you have coming up? 

SW: One of the relevant things I will be focusing on is the post Covid or ‘long Covid’ symptoms, and how they can be managed passively by endocannabinoids like CBD and things like this, but also how these are impacting the ECS and how is it related.

Up to 60 percent of people who experienced Covid-19, have some kind of prolonged symptoms that might be manifested as insomnia, anxiety, breathing problems, and so on. These people need some kind of post-Covid care.

We are preparing post-Covid online programs, individual and group consultations and we are working on a post-Covid retreat.

CH: What is Endoverse’s vision? 

SW: The vision is to educate the public on the ECS, and to provide certain interventions or ways that we can look at balancing the ECS holistically – through fatty acids for diet, exercise and other lifestyle changes.

 

The UK’s first organisation dedicated to the study of Endocannabinology, Endoverse is on a mission to simplify food supplement messaging and debunk myths surrounding hemp seed oil and CBD.

Anyone who wants to learn more can contact Endoverse at company@endoverse.com

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The Jiu Jitsu enthusiast tackling CBD stigma in black and Asian communities

Through his company, CBD Britanicare, Syed Dyas is tackling the taboo of CBD amongst black and Asian communities. 

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Britanicare CBD
CBD Britanicare founder Syed Dyas began using CBD after intense sessions of MMA and Brazilian Jiu Jitsu training.

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Syed Dyas, a Brazilian Jiu Jitsu enthusiast, found CBD helped him recover from an arduous training regime and introduced his parents to it after they were involved in a serious car accident. Now through his company, CBD Britanicare, he’s tackling the taboo of CBD amongst black and Asian communities. 

Nine years ago, Syed’s parents were involved in a major car accident. Amongst a number of serious injuries, his mother suffered from an open fracture in her forearm and underwent surgery on her wrist. 

Syed recalls she was prescribed heavy medications, including gabapentin and Tramadol, which came with a range of crippling side effects, including severe anxiety which later led to suicidal thoughts. 

“She wasn’t herself, she was in a daze most of the time and was really short tempered,” Syed tells Cannabis Health.

CBD Britanicare founder, Syed Dyas

At this point, CBD was still relatively unknown. Syed first heard about the cannabidiol compound while studying for his Master’s degree in pharmaceutical science at University College London and later started using creams and oils after intense sessions of MMA and Brazilian Jiu Jitsu training.

The 33-year-old has been practicing the martial art for six years, training as often as three or four times a week. He recently earned his purple belt, regarded as one of the toughest ranks to reach in the sport. 

With such a physically demanding hobby, Syed has had his fair share of injuries over the years, but says CBD has helped him stay on top form and maintain his health and wellbeing. He uses oil to improve his sleep and aid his recovery, while CBD-infused creams offer more targeted relief when recovering from injuries, he says. 

Several years after the accident, as his mother continued to suffer from the side effects of her medication, Syed suggested she try CBD.

“She had all these injuries and nothing was working for her,” he says.

“She suffered from a lot of anxiety just from travelling in a car and had nightmares and insomnia as well.”

He adds: “It  was quite extreme at that point, so I was exploring alternatives to your typical over the counter and prescription medicines.”

It was an incredibly difficult time for his family, but Syed’s mother eventually did find relief with CBD, which allowed her to come off the opioid medications that were having such a detrimental impact on her life and wellbeing. 

Seeing how much his mother had benefited from the supplement, Syed was “spurred on”, to start his own company, CBD Britanicare, and “share CBD with the nation”.

“It has really helped her and now I want to share that with as many people as possible,” he adds.

With a professional background in pharmaceutical regulation, Syed was well-equipped to start his own premium CBD company which he launched in the midst of the coronavirus pandemic. 

He began his career working for the pharmaceutical giant, Nurofen in Hull, before moving on to work for niche pharmaceutical firms in London. He primarily dealt with patient safety, medical writing and substantiating patient information for a range of different medications and food supplements. 

Having been embedded in pharmaceutical regulation for just under a decade, he says his background has helped him build CBD Britanicare on solid foundations. 

“With my background, I think I was able to register all the information quicker and in greater depth,” Syed says. 

“I’ve seen some people in the industry make mistakes, so I’m very careful with the advertising and marketing of the products.

“We want to reassure the public that we’re following regulations and guidelines from the government and the Food Standards Agency, while ensuring that all our products are lab tested and manufactured to the highest standard.”

 

CBD Britanicare produces a range of oils, from isolates to full spectrum using an olive oil base sourced from Greece and hemp from the UK. The family-run business also produces capsules, cosmetics, e-liquids and hemp-infused teas. 

But although Syed’s mother was willing to give CBD a try, his father was sceptical. 

Coming from an Asian background, Syed says CBD and medicinal cannabis is “looked down upon” in the British Asian community and his dad was against the idea of using a product associated with the illegal drug. 

However, after being diagnosed with early-stage bowel cancer last year, he eventually came around to the idea and started taking his son’s own products to help him during treatment. 

His father’s distrust of CBD is common amongst black and Asian communities, Syed says. With the launch of CBD Britanicare, one of his primary aims is to eradicate the taboo so more people like his parents can discover the benefits of CBD. 

 “Cannabis is obviously illegal in this country and it’s not really part of the culture,” he says. 

“With CBD Britanicare, I really wanted to do away with that stigma and introduce CBD into these communities.”

CBD Britanicare is teaming up with influencers from black and Asian communities to help promote CBD, including Solomon Lefleur, Queensbury Boxing Champion & ISKA World Champion Kickboxer, and Ajmal Khurram, a social media influencer, personal trainer and wellness coach.

Alongside its new partners, CBD Britanicare aims to tackle the stigma and get more people using the supplement who may have otherwise dismissed it. 

Syed adds: “We’ve already partnered with influencers across the country who have built up a big following; mainly people in the communities who are into sports, bodybuilding and MMA. They’ve used and reviewed our products, and many were surprised themselves at how much they benefitted.”

With the passion and determination to tackle misconceptions, CBD Britanicare is one to watch!

For more information about the company and products visit www.cbdbritanicare.co.uk and keep up to date
by following them on all social media platforms.

 

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