Laura & Laura Jayne at Cannabis: A New Green Deal by Uplift.ie | 20.04.2021

Laura Jayne Foley has a Masters in Agricultural Innovation from NUIG (the National University of Ireland, Galway). She is a co-founder of Canabaoil Ltd. and 1Wild Atlantic Hemp. She is also a board member of 2Hemp Co-Operative Ireland. Laura Curry Cloney is the founder of 3The Hemp Higher Project, which was a finalist in 4The Social Entrepreneurs of Ireland.

The following extract has been adapted from the live stream for the purposes of clarity and brevity.

Emily Duffy (of 5Uplift): I’m going to get into some of (the viewers) questions, but the first one that I wanted to put to everybody was, what opportunities do you see for campaigning, specifically out of this 6report? Is there new information that we feel is a good lever of change? I think a lot of the health concerns that have been raised can be addressed through legalisation. If people can access strains that are more beneficial, that are less likely to cause certain things, then people will be healthier. Laura Jayne, would you like to come in? Laura Jayne: Hi! I suppose I just wanted to mention the farming point of view, ‘cause that’s where I come from. So, we grow hemp in West Clare and there’s 200 members of the Hemp Co-Operative growing it. It’s something that I think would benefit rural Ireland, to be able to develop this industry. It had the same kinds of restrictions put on it from a business point of view around the THC element, and I suppose, stigma.

I think this document really gives us an idea of where the prohibition came from. And it really gives us a good understanding about where we’re positioned and why it became illegal. It gives people the opportunity to see it for what it is. It is a plant that is so easy to grow. It has so many benefits and as Shae (Flanagan, of Uplift) mentioned, environmentally it has so many benefits. In an environment where we’re moving away from petroleum products, hemp is a big solution for a lot of those problems. Not only is it a food that’s hugely nutritious, but it’s also a solution to a lot of our environmental problems. It’s something I would very much like to see grow in Ireland in small farms. It has the opportunity to be a revitalisation for rural Ireland. Emily: Yeah, absolutely. And hemp is actually a carbon sink, isn’t it? It stores carbon. Laura Jayne: As Seán (McCabe, of TASC) said, it sequesters a huge amount of carbon, but it’s also phyto-remedial.

So what it does is, it draws glyphosates, heavy metals, chemicals out of the ground, so that it can actually put the soil back in a situation where it’s organic. You know, we’re taking those toxins out of the ground and we’re improving the soil. There really are so many positives for the environment, as well as from a nutritional and medical point of view. Emily: And I think as well, Ireland has one of the highest rates of glyphosate in our surface water in the EU. So, even more of a reason to get those toxins out of the ground. One member, Deborah, has asked a really important question here around community wealth. A lot of you touched on rural Ireland and how this could potentially revitalise it. Rather than talking about tax and economy and all of those kinds of things, how do we see the legalisation of cannabis putting life back into our communities? Creating changed communities that support each other and thrive and grow – pardon the pun! Is there anybody who would like to come in there? Laura Jayne, back to you.

Laura Jayne: When we were doing our Masters, we did a lot of research on farmers and farming in the West. ‘cause we see hemp as having a huge potential as a rotational crop but also as an alternative income. But one of the things we did notice was a lot of the farmers that we interviewed were under 35. Most of them had just inherited the land from their family and they didn’t want to go back to the old way of farming that had been done before. They felt that it wasn’t profitable. What they saw in hemp was that there were so many opportunities from the bio-economy, from CBD oil, from fibre… I would say hemp and cannabis are the same thing, but from the industrial hemp point of view, there’s opportunity there for farmers to increase the income on their land. And that has a knock-on effect in rural Ireland.

A lot of people are part-time farming. They might be working from home. They’d have a plot where they’d spend a few months during the summer, they might grow some hemp. So for me that’s one of the reasons why I think it has that power to revitalise rural Ireland. Also, small processors. We process CBD oil, we have a HSE (Health Service Executive) approval to process cannabinoids from cannabis sativa. And we’re a small operation. But there is an opportunity for processors like us and all around Ireland, developing their own product, developing a local product. And I suppose I think that is where there is some huge opportunity. Emily: Excellent! I just want to check in with Laura Curry Cloney, did you want to come in there?

Laura Curry Cloney: Hi everyone, thanks for having me on. Thanks for the amazing report, it looks really, really good. Just to pick up on something that Shae said, in terms of bogland and growing hemp that may not be of the best of quality.. It can potentially be used for something like hempcrete. It doesn’t necessarily have to be really good quality to do that. It can also be used as biofuel, even on very toxic soil, like for example, landfills. In Ireland alone, there’s over 300 landfills and these sites have been abandoned or are old abandoned mines. If we grew hemp there, you could then create a biofuel from the hemp that’s harvested and also heal the land. So, in those terms you can use it, even if it’s not the highest quality, for other industrial purposes. Emily: That’s great, brilliant.

This is a great question here from Maria, who is talking about chronic pain in particular. I think the medical conversation is really important, but I think, and some of you might touch on this, the means by which people can access cannabis has been highly regulated and restricted. “How much does the Irish government spend on pain management medications with incredibly serious side effects?” So she said that she’s “seen people in Ireland with Rheumatoid Arthritis, 7Ehlers Danlos, back issues, hip issues” going off very high strength prescribed medications, which have a lot of side effects, and that if people could access the right strain, that people would get much better outcomes and much better medical care. But I think the question there is, what is the form of legislation or how does the law need to be, to make sure that people can access the type of cannabis strains that they need? I’m gonna go to Laura Jayne and then I’m gonna go to Laura.

Laura Jayne: Hi. I suppose it’s not from a medical point of view, but it’s from the hemp side of things. When we started farming in 2018, what we wanted to do was make a full spectrum oil. And from 2018-2021 actually, it’s taken us a good long time to get through all the different loops. But from a Food Safety Authority point of view, they’ve allowed us to bring out a full spectrum oil. So our oil has .3% THC in it. Now we got that through on the basis that it’s food and it’s an acute reference dose for THC in foods that was set by the European Food Safety Authority. So we’ve a full spectrum oil. It’s CBD, but it’s also CBG and THC. So there is a soft spot there in the legislation. We’re coming under food law, it’s not under The Misuse of Drugs Act. So it’s a slight ability to get THC into a product, it’s only taken a few years. The licence to cultivate cannabis sativa, the hemp licence, is achievable for most farmers. The HSE have approved us for the processing of cannabinoids from cannabis sativa. Now it’s hemp, but it is cannabis sativa.

I suppose it’s the angle we’ve come at it from. We saw a legal opportunity to grow it, to see if it would grow in Ireland. It grows well, we grow it outdoors. We’re restricted on the type of seeds we can grow, so obviously we would love to see a better range of hemp seeds available that would have higher THC content. But it’s just a positive that there are products on the market that are full spectrum, that do have THC in them. And I suppose going forward, we want more, but that’s where we are at the moment. Emily: Great, thank you so much. And Laura.. other Laura! Emily Giggles Laura: Thanks. Just in relation to what Laura said there, I actually stock her CBD oil in our Hempire yoga studio. And it’s really, really good. It’s excellent quality and having that certificate from the Food Safety Authority, allowing (me) to sell it, makes it a legal product in Ireland. But unfortunately, where the divide is internationally, you can’t sell that through something like Shopify or Paypal.

Even though we have all of the paperwork and all of the documents that say this is a legal product, we are still in a position where we can’t sell it by those means. So you’re looking for different payment gateways to actually get your product out on the market. And the other side of the wellbeing sector is the spiritual aspects of cannabis and how spiritually healing it is, not only to be outdoors growing it. But also, when you see references that are 4,000 years old in The Vedas, referencing this plant as one of the five most revered herbs in the world. That’s ancient Hindu scriptures, where this plant is revered for its magical properties. So that element needs to be brought in. It’s also described as “a plant with an angel residing in its leaves”. And that’s translated from (the) Sanskrit language. So if these ancient Yogis understood this, us as a species can now catch up with that and reawaken that knowledge in us. And I really feel that that’s what this plant is here to do.

It’s to reawaken that understanding and that compassion and that compassionate heart, for everyone. Emily: Compassion is definitely something that we need more of in the world right now, for sure, Laura. And I think what’s really interesting as well, having watched your presentation Seán, was how this used to be a crop that was just readily grown here. That there was a decision made at some point in the past to demonise something that was before that very natural and was used as a tool to boost our economy and lots of other things as well. And it’s obviously not just about that as well, but people do use it as a spiritual aid and I think that’s a really important point as well. I have one final question. Actually, this is for you again Laura, but anybody can come in here if you wanna put your hand up, which is – what small step can we take as individuals right now to bring us closer to legislation?

Laura: Do your research, look into it. Send this information off, because your report looks amazing. So, well done Uplift, this is incredible. And if this is rolled out, we can contact TDs. There’s no denying what this plant can do. When you put together a report of that nature, there’s no argument against it. And people do need to take action, like Nicole (Lonergan, of Cork Cannabis Activist Network) said. It’s up to us to contact TDs, to contact all of these political parties and make some noise about it. And really start to get that roots kind of approach where we’re all standing together. We all want the same thing, whether it’s medical use, or environmental use, or whatever. We all want this plant legalised and that’s super important. It’s really important for the Earth, it’s really important for our children, for their children. We need somewhere to live. For me, that’s what drives me and that’s what I think is so important about cannabis, is where it can bring our planet. Emily: Great, thank you so much Laura. Now I’m gonna ask Laura Jayne…

Laura Jayne: From our point of view, I think we’re pushing an open door. Roderick (Campbell, of The Irish Medical Cannabis Council) said something earlier. He said how to monetise it is the government’s problem. That may be the issue they’re coming up against now, because it is going to be a massive industry. I know CBD, it has been a massive introduction to a much older population in Ireland. People who would never have thought of using cannabis before. And they’re finding the benefits for arthritis, and for different reasons they’re using it. I think now that that population issue you were discussing earlier isn’t there as much. I find that most people we speak to are hugely proactive about the legalisation of cannabis. And people are pushing an open door.

Emily: I love that metaphor of pushing an open door and understanding that it’s as much about how as when. How we’re going to legalise cannabis and how it should benefit our communities. How we should see the wealth created from it going straight back into rural Ireland, that is especially vulnerable now after Covid. There’s even more of a reason now to push it. As Roderick said, there’s 102 people on this call right now. There’s thousands of people who have donated, thousands of people have signed 8petitions. There is a big and growing community as part of this campaign. It’s one of the biggest engagements that we’ve seen in Uplift campaigns in a really long time, which is always a sign to me that we’re gonna win. 

I might pass over to you now Shae, to talk about next steps and where we go from here. Shae: Cool. Once again, thanks to all of our panelists. Thanks to Seán for a great report, and a great presentation on the report. It is being finalised as we speak. TASC and Uplift are putting together some key messages, some of those ones that might work for politicians. Once it’s published, it’ll be circulated for use as a resource for Uplift members, any activists or groups and organisations that could benefit and want to use it for campaigning work. The report is balanced, it’s evidence-based and clear. And I’m really keen for us to work out our next steps together as activists and farmers and as a community. Uplift is a broad church. We come from a lot of different places and I think our plan is best worked out together. Thank you to Nicole, Laura, Laura Jayne, Roderick, Seán and my beautiful co-host, Emily. And thanks all for coming and giving up a piece of your Tuesday night. Enjoy, go forth and be well!

References

1 Check out Wild Atlantic Hemp here – https://www.wildatlantichemp.com/pages/about-us

2 Find out about Hemp Co-Operative Ireland here – https://hempcooperativeireland.com/about/

3 Hemp Higher Yoga’s site is at this link – https://hemphigheryoga.ie/about-us/

4 For more info about The Social Entrepreneurs of Ireland, click this link –

https://socialentrepreneurs.ie/about/

5 The official Uplift website can be accessed here – https://www.uplift.ie/

6 Seán McCabe’s presentation about the upcoming TASC (Think Tank for Action on Social Change)

report on cannabis can be read here –

https://greenlensblog.com/2021/05/28/seanmccabe-new-green-deal-uplift/

7 For more on Ehlers Danlos Syndrome, check out our recent interview with Evie Nevin

https://greenlensblog.com/2021/05/31/evie-nevin-26-05-21/

8 Uplift petition – https://my.uplift.ie/petitions/legalise-cannabis-in-ireland

* The full recording of this Uplift panel discussion, Cannabis: A New Green Deal,

can be seen here – https://bit.ly/3fMje97

Nicole & Roderick at Cannabis: A New Green Deal by Uplift.ie | 20.04.2021

Nicole Lonergan first became involved in speaking out about cannabis circa 2014. Through 1Cork Cannabis Activist Network, she raises awareness about the benefits of cannabis and the extensive harms of prohibition. Roderick Campbell is a member of Uplift, as well as 2The Irish Medical Cannabis Council. He is currently setting up The Irish Cannabis Co-Op. The following extract has been adapted from the live stream for the purposes of clarity and brevity.

Emily Duffy (of 3Uplift): I’m going to get into some of (the viewers) questions, but the first one that I wanted to put to everybody was, what opportunities do you see for campaigning, specifically out of this 4report? Is there new information that we feel is a good lever of change? I’d like to throw that out to you first. Nicole, you’re laughing, so I’m gonna hand over to you to start. Nicole: I knew I was setting myself up for something there. Emily Laughs Yeah, no problem! I think we need to be very clear first of all whether the report is actually asking for decriminalisation or legalisation, because those are two completely separate things. Legalisation is what will give us a legal industry, whereby people can legally buy cannabis that’s been tested from licenced vendors. I think the most important thing to push for going forward is public participation. I mean, in all the TDs that I’ve engaged with, the main issue they say to me is that enough people aren’t speaking up about this.

Many of them aren’t even aware that this is an issue that really needs to be addressed. I know it can be quite daunting to people to approach a TD or to put their name out there. But I can assure you, it will be treated confidentially. And it’s really important to speak up and to be an active part of your community and to let your TDs know what issues are really, really important and what needs to be addressed. So this is one of them and I encourage anyone listening to be brave and speak up and be vocal about your cannabis use. Because if it benefits you, I feel that other people should know. Emily: Absolutely, I couldn’t agree more. Uplift is a community of over 360,000 people across Ireland. There’s people in every constituency in Ireland and we can provide the tools to start those conversations with politicians and to demystify and de-stigmatise something that is helping so many people stay well.

Would anyone else from the panel like to come in there? Laura Jayne Foley (of Wild Atlantic Hemp): I think Roderick put his hand up. Emily: I can’t see Roderick for some reason.. Roderick: I was hiding. Laughter Emily: “Where are you?” Roderick laughs Please come in, Roderick, thank you. Roderick: I think one of the things that stands out to me in terms of the narrative of the story that we’ve been telling is up until recently as cannabis campaigners, we’ve been telling the story that we think that cannabis is not necessarily bad for our communities. That it has either a positive effect or a neutral effect. And I think one of the stories that doesn’t get enough focus is that prohibition is really bad for our communities. It’s very unhealthy. It is killing people. Because we see that opiate use and opiate deaths particularly, drastically increase, when there’s prohibition. So we’ve got children’s use. Also, underage use increases during prohibition.

Criminality in the amount of money going to violent criminal organisations and cartels increases. So, what we see right now is thorough inaction. And I think this is a really critical, from my perspective, change in the story. It is the inaction and the cowardice and the pearl clutching and this “waiting for the brown paper envelopes” of our TDs. It is actively harming our communities, harming our children and killing people. And that switch of the narrative, I think, it changes the momentum of the campaign. Emily: Absolutely, I couldn’t agree more. And I think a lot of the health concerns that have been raised.. I think that actually a lot of it can be addressed through legalisation. If people can access strains that are more beneficial, that are less likely to cause certain things, then people will be healthier. And I think, also, that idea of bronchitis.. We know in California a lot of people don’t smoke it at all. It’s edible and things like that, so I think that’s an argument there as well that’s very strong.

Roderick: We’re launching the cannabis co-operative, which is starting in Kinsale. It’s about thirty people launching the thing, and (it’s) focused on the consumer development side of things, instead of growing. Dispensaries, e-commerce and delivery, that sort of thing. I’m actually in Washington right now where it’s legal, completely. So I’ve got legal cannabis in front of me. And I’m doing a little bit of research around products and particularly ethical businesses around it. I live in Kinsale, and there’s an island here in Washington that’s very similar in almost every way. A similar flow of traffic, people coming through tourism, a similar population. And there’s two shops on the island. And both of those shops, the dispensaries on the island, they’re paying a $20 minimum wage, before there was any increase in the minimum wage.

That’s more than double the normal minimum wage in Washington State. And in addition to that, full benefits. And in addition to all of that, the businesses that own these two shops are still pulling in between $50,000 and $100,000 per month in revenue, for the community. So, the revenue is just off the charts. And I think that the big race now that we’re going to see, and the reason they haven’t moved on legalisation, is because they don’t know how to monetise it and monopolise it yet. And the big battle here I think, is for us to get the legalisation over that line as soon as possible. And also to make sure that we can bolster co-operative, community-owned businesses and enterprises to dominate this thing. If we don’t, you know we’re gonna lose a lot of money out of our communities. Emily: Absolutely. And I think there’s a real opportunity for forming a new type of economy here, for doing things quite a bit differently and better.

I think that some of those models in the US are fascinating. And the thing as well is that politics in Ireland are quite local and people are very interested in revitalising their communities. There’s often even more of a chance of convincing politicians of that, so that’s an opportunity to get a little strategic campaign in there. I’m gonna go hand over to Nicole! Nicole: Yeah, just to expand on what Roderick said, because all his points are completely valid, it is a massive industry. It’s a multi-million dollar industry. I’m pretty sure the cannabis industry has created about 321,000 jobs in the States and there’s now more cannabis-employed people than dentists. So that’s insanely significant and that needs to be looked at here. I don’t think we can afford to turn our noses up at the revenue that can be generated from this industry.

It just makes sense. Apply this to alcohol – would people rather drink alcohol out of a shoe that was made in someone’s shed, or would they rather buy it from a legal premises where it was tested? I mean that’s a no-brainer, and the same applies to cannabis. While we’re relying on the illegal market, we don’t know what we’re getting. So, I personally would much rather go to a store and choose from a wide range of products. And that is just gonna create a massive amount of revenue, which in turn can be used to fund addiction services, or just generally we could put (it) back into our communities, and to fund our education. It’s so important and my mind is boggled as to why this hasn’t been implemented in Ireland yet. I’m just hoping it will be soon. 

Emily: Great. You touched a little bit there on another great question that came in from a member called Eno, which is, given Irish history and habits, wouldn’t it be effective to produce a proper academic comparative study? He doesn’t know of any studies that are out there, but basically, should we talk about the health and societal implications of alcohol and compare them to cannabis? Is there anybody that would like to answer that one? Yeah, Nicole, keep going! Nicole: I’ll keep going while I’m on a roll! Laughter It’s important to do that, but at the same time you have to acknowledge that cannabis is very different from alcohol. There are always conversations around cannabis, “recreational” versus medicinal, but cannabis itself is inherently medicinal. There’s no budging from that, it’s on the use of the person. Responsible use and personal responsibility are massive when it comes to this.

But yeah, absolutely, it would be worthwhile comparing hospital admissions, for example, between alcohol and cannabis. And the amount of money that’s actually spent on treating both. Because as we know, most people who go to hospital for cannabis… all of those symptoms will resolve themselves at home, with time and re-assurance and rest. There is usually no need for them to actually be in hospital in the first place. It is an important comparative point to make, but at the same time we have to recognise that these are two completely different substances. Emily: Perfect, yeah. I think that’s a great answer. This is a great question here from Maria, who is talking about chronic pain in particular. I think the medical conversation is really important, but I think, and some of you might touch on this, the means by which people can access cannabis has been highly regulated and restricted.

“How much does the Irish government spend on pain management medications with incredibly serious side effects?” She said that she’s “seen people in Ireland with Rheumatoid Arthritis, 5Ehlers Danlos, back issues, hip issues”, going off very high strength prescribed medications, which have a lot of side effects. And that if people could access the right strain, that people would get much better outcomes and much better medical care. But I think the question there is, how does the law need to be, to make sure that people can access the types of cannabis strains that they need? Nicole, you’re coming in there straight away! Nicole: Thanks. Yeah, I think it’s really important for people to recognise that what’s in place doesn’t work. There’s currently two systems in place, whereby people maybe can access medical cannabis products.

So, the first is the licensing system. That’s not fit for purpose as far as I’m concerned, because basically you have to apply via a Consultant. They will then be issued a licence to prescribe products containing THC. You have to choose from the products that you get from the Dutch pharmacy, and most patients are actually paying anywhere from €600 to €9,500 every three months for a prescription. That’s ludicrous, nobody should be paying that money for any type of healthcare. The Medical Cannabis Access Programme, that’s not even been active yet. Legislation that was signed in 2019, it’s still not active. It’s not due to be active until June 2021 and it’s only for three specific conditions and four cannabis-based medicines. And the part that’s actually quite upsetting and very wrong I think, for something that claims to be a compassionate access programme, is the fact that the conditions which it allows access for can only access these products as a last resort.

So that means for patients with MS, they are forced to endure high doses of botox, I think it’s a medication called Tizanidine, apologies if I’m butchering the pronunciation, before low-dose cannabis-based medicines will even be considered. That’s not compassionate, it’s not accessible, so it doesn’t work. I really feel that if we’re gonna be relying on headlines and just accepting what crumbs are thrown our way, we’ll never get what we need. And what we need is actual compassionate access for people who do need these products. People shouldn’t have to jump through hoops. I think it’s very wrong for people who are ill and who are already suffering to put them through so much financial stress to try and get access to a natural product.

So again, I just hope that people will actually push for this and not settle. Because we deserve so much better. Emily: Great answer and I couldn’t agree more. Roderick, would you like to come in? Roderick: Sure. A few small things. I’m biased, because I’m trying to push that 6petition. Laughter So the Uplift petition, there’s some really small things. There’s 102 people here. And there’s one thing that if you did this once a day, or once a week, or with any regularity, that petition would begin to explode. Go on Facebook and join some related Facebook groups, like permaculture, cannabis or drug-related groups, community groups, it doesn’t matter. And if you don’t want all your friends to see it all the time, that’s fine, go to a private one. And then consistently, every day ideally, or every week if you’re willing to, go in and share the petition and say something about cannabis.

A fact about legalisation, and share it and ask people to sign it. And if we can get that fucker to explode, I think that that will give us the organising ability that we need to add a bit of pressure on TDs. That and then one other thing. I think the other big thing is culture-making. Ireland is still in sort of a time capsule, in terms of the culture around cannabis and the expectations, even though fucking everybody smokes, or has at some point. Emily laughs So, that’s the sort of paradox. I think particularly, we’re running into this cultural phenomenon where older people don’t wanna encourage younger people to smoke, even though they smoked. So they want to pretend like they never smoked and it’s bad. Fuck that! The way that we overcome that is by forcing people into a corner, especially our family members, and forcing the conversation.. in a really friendly way.

Emily laughs And if we can do that en masse, we will change the culture. Just like what happened with marriage equality, just like it did with abortion. So, culture-making, and push the fuckin’ petition please! Emily: Absolutely, brilliant Roderick! I love that answer. Nicole, I’m gonna come to you. Nicole: No bother. Excellent points Roderick, love it. Just to expand on that again, just talk! Never shut up! I mean, I talk to the Tesco delivery man about cannabis. He knows what’s coming every week. When you bring the issue of cannabis to anyone in government, they’ll go: “Oh the harms, we have to protect people!” Let’s compare it with Penicillin. How many people are allergic to Penicillin? How many people will have a really, really severe reaction to Penicillin that might put them in hospital, might even kill them?

We factor that in, but we don’t overlook the overwhelming benefits that come with Penicillin. And this should be applied to cannabis, cannabis is no different. We cannot afford to overlook the benefits that cannabis can bring to so many sectors in our society. So again, talk, talk, talk. Share as much as you can. Don’t be afraid to speak up, because once you do you kind of… you never can shut up then really, you’re kind of (saying): “I want to share this information with people!” If your family and your friends are your support network, they will understand and they will listen to what you have to say about cannabis. So yeah, it’s just really important. Please talk, please speak up, don’t be afraid!

References

1 Cork Cannabis Activist Network’s central hub can be accessed here –

https://www.linktr.ee/CorkCAN/

2 For official updates from the Irish Medical Cannabis Council, see

https://www.medcan.ie/

3 The Uplift website can be found here – https://www.uplift.ie/

4 Seán McCabe’s presentation about an upcoming TASC (Think Tank for Action on Social Change)

report on cannabis can be read here –

https://greenlensblog.com/2021/05/28/seanmccabe-new-green-deal-uplift/

5 For more on Ehlers Danlos Syndrome, check out our recent interview with Evie Nevin

https://greenlensblog.com/2021/05/31/evie-nevin-26-05-21/

6 Uplift petition – https://my.uplift.ie/petitions/legalise-cannabis-in-ireland

* The full recording of this Uplift panel discussion, Cannabis: A New Green Deal, can be seen here –

https://bit.ly/3fMje97

Evie Nevin | 26.05.21

Evie Nevin is a political and disability rights activist. She is a member and former election candidate of the 1Social Democrats party and hosts 2The Zebra Mom Podcast, where she speaks with neurodivergent and disabled women. She has 3Ehlers Danlos Syndrome, a genetic connective tissue disorder which causes the production of faulty collagen. She has been on a 4waiting list to see a Pain Management Consultant since June 2017. The condition can potentially affect every system of the body and causes frequent joint dislocation. Evie’s main struggles are chronic pain, chronic fatigue and she faints easily and struggles to stay upright for very long, as it can cause her heart rate to increase and blood pressure to drop (a result of 5Autonomic Dysfunction, a co-morbid condition linked to EDS). Last year she was also diagnosed with Autism. May is 6EDS Awareness Month. Twitter: @evie_nevin / @thezebramom

How has your experience been, working on The Zebra Mom Podcast?

I started the podcast because I wanted to provide a platform for women who have disabilities and/or who are neurodivergent, because we are so rarely given a seat at the table. Life is hard enough being a woman but then adding disability, chronic pain or neurodivergency brings a whole host of extra challenges. This podcast is a space for women to highlight their struggles and the struggles of their own community. It’s early days, but I have already learned a lot from my chronically ill peers. We share so many of the same experiences as well, so it is nice to connect with people who can empathise with you.

Can you please give us a summary of your experiences having EDS diagnosed?

Getting diagnosed was a very long journey. Obviously I was born with the condition and while I had challenges growing up, the pain didn’t start until I was fourteen. Then by eighteen to nineteen, it was really problematic and the fatigue and digestive issues also kicked in. I went to my GP who diagnosed me with depression and anxiety. I tried so many antidepressants, but nothing was working. I went through some very dark times during that period because I was told it was all in my head and from my perspective, there was nothing to be done to fix it. Then in 2009, I was pregnant with my son and the EDS progressed again. We figured it was just typical pregnancy stuff, but it didn’t get any better. In fact, my pain and fatigue got much worse. I was sleeping so much. Then in 2012, I was interning for a newspaper and ended up interviewing a woman with Ehlers Danlos Syndrome. 

Everything about her story resonated with me. She spoke about having to travel abroad for treatment. I was telling her about my own issues and she gave me the name of a knowledgeable Doctor in Cork who may be able to help. I brought the idea of EDS to a new GP who said it was unlikely, as EDS “is as rare as hen’s teeth”. But in November 2013, I was diagnosed with EDS and Postural Orthostatic Tachycardia Syndrome. It was bittersweet. In one sense, I was relieved I finally knew what was wrong, in the other sense I was facing a life long condition and my children had a 50% chance of inheriting it too. My son was diagnosed with it a year later.

On March 9th, you tweeted a photograph of prescription pill packs, saying:

“This is 224 opiate based pain meds for the month. Then add the 224 paracetamol

I take too. This only just takes the edge off the pain.”

How does using cannabis compare to conventional prescription medicines, for EDS?

There are many EDS experts who recommend cannabis as a treatment for pain. I have asked Consultants in the past about possibly getting a prescription but they said at the time the guidelines were not very clear and that my condition is not on the list of approved conditions for a prescription for medical cannabis. The problem with long term opiate use is that you can develop all sorts of problems as a result. You can develop respiratory problems and I happen to have been diagnosed with asthma. You can have issues with your hormones etc. Also, with EDS, you can metabolise drugs very quickly and you can develop resistance extremely fast too, meaning you may have to move to stronger drugs and of course, without seeing a pain specialist, I can’t get anything stronger than Tramadol.

I have used cannabis before and even if it didn’t completely kill the pain, I was in a far better mental state to cope with it.

Last December 14th, you tweeted that the government needed to expand the Medical Cannabis Access Programme for patients with chronic pain. You said:

“High doses of opiates are far more dangerous than marijuana.

I developed a chronic respiratory illness and need regular organ function tests because of all the meds I’m on.”

Do you see the current government expanding MCAP in the near future, or generally reforming our cannabis laws?

I have hope that we will see the decriminalisation of cannabis within the next decade. I believe it should be legalised and taxed. But at the very least, it should be an option for people who live in chronic pain, where conventional medicine doesn’t allow the patient to live pain free.

Have you contested the fact that EDS isn’t regarded among the conditions approved for medical cannabis under MCAP?

I tried to sit down with Simon Harris when he was Minister for Health to discuss the overall situation for patients with EDS. The HSE isn’t being truthful about the lack of expertise here in Ireland. I had planned to speak with him about medical cannabis too but unfortunately, that never came to fruition. Once Covid has subsided, I plan to try with Minister (for Health, Stephen) Donnelly. An interview I gave on the subject was read out in the Dáil at one point too.

When did you first become interested in cannabis?

I think every Irish teenager comes across it at some point, but I didn’t realise the potential it had for pain management until much later on in life, once I had heard EDS experts talk about it.

What are your personal preferences in terms of how to use cannabis?

The CBD buds I buy. I smoke. I am a frequent buyer from 7Little Collins.

While it doesn’t help with pain, it does help relax me a bit; enough to cope.

In July 2018, you spoke at Macroom Townlands Carnival about whether Ireland should legalise cannabis with 8TD Gino Kenny (of People Before Profit), 9Vera Twomey and 10Thomas O’Connor. How was this discussion received at the time, and do you feel that public support for legalisation has grown since that time?

It went down very well. I remember the Gardaí were standing at the back of the tent listening in for a few minutes, but then they left and didn’t seem bothered at all. I think everyone in that tent was on the same page, at least about decriminalisation. I think more and more people are coming round to the idea of legalising it.

Do you know a lot of people who use cannabis recreationally or medicinally?

I know a few people who do use it medically in other States where it is legal and they say it does help.

Has political and disability rights activism significantly affected or changed your view of our government? What are some of your current areas of focus in activism?

I became politically active during 11Repeal and campaigned as Disabled People for Choice, as disabled people were spoken about rather than spoken to. That led me directly into politics and I decided to run for election because I see nobody in local or national politics who looks like me or has the same experiences as me. My main focuses at the moment are housing, healthcare, adoptee rights and generally any issues that disproportionately affect minority groups. I’m very much about “nothing about us without us”.

Thanks for your time, Evie! All the best!

References

1 Find out more about the Social Democrats here – https://www.socialdemocrats.ie/about-us/

2 Check out The Zebra Mom Podcast here – https://anchor.fm/thezebramom

3 Follow this link for more information on Ehlers Danlos Syndrome

https://www.ehlers-danlos.org/what-is-eds/

4 This extremely long wait was mentioned in a recent Evening Echo interview with Evie, at this link

https://www.echolive.ie/corknews/arid-40290170.html

5 Autonomic Dysfunction is explained in detail at the following link –

https://www.ehlers-danlos.org/information/autonomic-dysfunction/

6 Check out my interview earlier this month with fellow EDS patient, Milly Gilbert, at this link –

https://greenlensblog.com/2021/05/25/milly-gilbert-20-05-2021/

7 Check out what Little Collins have on offer at this link – https://www.littlecollinscbd.com/

8 Find out TD Gino Kenny‘s thoughts on cannabis in this recent Irish Examiner debate piece here –

https://www.irishexaminer.com/opinion/commentanalysis/arid-40284671.html

9 Check out my interview with Vera Twomey here –

https://greenlensblog.com/2020/11/25/vera-twomey-cork-21-11-2020/

10 Here’s a 2013 article from The Kerryman with information on Thomas O’Connor‘s Free My Weed campaign –

https://www.independent.ie/regionals/kerryman/news/free-my-weed-29731231.html

11 Here’s an article on The Journal detailing the 2018 victory of the Repeal the 8th campaign,

following a national referendum on the right to have an abortion in Ireland – https://jrnl.ie/4034416

Milly Gilbert | 20.05.2021

Milly Gilbert lives in the UK. She suffers with mental health and physical conditions including depression, generalised anxiety, C-PTSD (complex post traumatic stress disorder), 1dissociative seizures, 2hEDS (Hypermobile Ehlers Danlos Syndrome) and 3fibromyalgia. She has a private medical cannabis prescription for thirty grams of indica flower a month and 50mls of oil (CBD 10:THC 5), as she did not qualify for cannabis prescribed through the NHS (National Health Service).

Twitter: @millygilbert17

Can you please give us an outline of your experiences receiving diagnoses of your mental health conditions within the UK health system?

I was diagnosed with depression by my GP back in 2011, after moving back to the UK, having lived in New Zealand for four and a half years prior. I was on and off antidepressants for a while, but I never found they helped. In 2015, I went back onto antidepressants after coming back from a holiday early, which had triggered some bad memories. After this I was unable to work, due to both my mental health and my physical health. I have Hypermobile Ehlers Danlos and fibromyalgia, which cause lots of other medical problems and leave me with lots of daily pain. In 2019, my mental health was at the worst it had ever been. I had started picking at my skin, which has left me with scarring, and I really struggled to cope with all the emotion I was feeling. I started having night terrors, flashbacks and what I didn’t realise at the time were dissociative seizures. At the end of 2019, I spoke to my GP about how bad things had become and I was told to self refer to have therapy. I did this and heard from them a few months later. By this point the pandemic had hit, which meant they were no longer able to take on patients.

They decided I should be seen as an urgent case though, so they referred me to another clinic. A few months later I heard from them and they said that I could start therapy, but there would be a wait. In the meantime, they would get a Psychiatrist to see if they could help. The Psychiatrist spoke to me and we talked about traumatic experiences and how I was struggling. He then diagnosed c-PTSD, dissociative seizures, generalised anxiety and depression. I was already on an antidepressant, but they placed me on a mood suppressant and medication to help me sleep. I didn’t get to start therapy until November, by which time it had been a year since I first self referred myself. 

For those who are not familiar with the term, can you please define dissociative seizures?

Dissociative seizures are also known as non-epileptic seizures. People may have different types of seizures. For me I would become starry or seem spaced out, I would be completely blank. Other times, I would have a conversation with people that I would have no memory of happening. For people who didn’t know I had these seizures, they would often think I was just falling asleep as that’s what it would look like to them. For me, my vision would go weird and my head would just drop. I have spilled many drinks after having these seizures while holding a drink. Other times I would shake, or my joints would jolt uncontrollably. My triggers are stress and anxiety as well as when I struggle with triggering thoughts. I also struggle with this when I overheat.

Why was it that you didn’t qualify for medical cannabis through the NHS? Do you believe the scheme is in need of expansion?

On the NHS, you only qualify for medical cannabis if you are a child with epilepsy, an adult with vomiting or nausea caused by chemotherapy, or if you have MS (Multiple Sclerosis). Even with these conditions, there has only been around three prescriptions of medical cannabis prescribed on the NHS. Currently NICE (The National Institute for Health and Care Excellence) say there is not enough evidence on cannabis to treat chronic pain.

What’s your relationship with cannabis like and what are your preferences when using it?

I have never had any problems when using cannabis and have found it has helped me in many ways. The oil I have is 0.5mls, three times a day and I can also have up to 1g of cannabis flower to vape daily. I always vape this, and the amount I use a day will change depending on how my pain is. 

When did you first become interested in cannabis?

I became interested in cannabis approximately around 2018. It was something I had been talking about with my dad, and we then went to Green Pride in Brighton. At the time I didn’t know too much about cannabis, but had heard it had helped people so that’s when I started to do more research. A private prescription was too expensive and so I had to wait until 4Project Twenty21 started up. 

How does weed help your conditions and how does using it compare with conventional prescribed medications?

The flower has really helped my pain, and I have been able to come off high doses of opioids. At one point, I was on 7.5mls of Oxycodone liquid, six times a day, and I was on 10mg Oxycodone tablets in the morning and 20mg at night. The oil has also really helped my mental health, due to it being a higher dose of CBD. And when I ran out of the oil at one point, I noticed a dip in my mental health. My health has improved in other ways also. I am able to sleep better and no longer need sleeping tablets. My gut issues improved and it’s also helped my chronic migraines.

Have you tried CBD supplements and what was your opinion of them?

I have tried CBD oil in the past as well as CBD liquid that went in a vape. I never found much improvement with these. I am unsure if these were full spectrum or not.

In Ireland, CBD businesses adhering to the EU law of selling products with less than .2% THC content have been enduring raids from Irish police, who do not yet recognise this law in the Irish legal context.

How has the sale of CBD been treated in the U.K? 

I believe labelling had to change on full spectrum products. There was also a café that sold CBD products, however they were raided and ended up having to close and also lost all their product. I do still notice shops selling CBD products, however I am unsure if these are full or broad spectrum.

Do you know a lot of people who use cannabis?

I know of a few people who use it recreationally, but I know more who take it for medical reasons, due to meeting them online. Some of these people have a prescription, turn to a dealer, or grow it themselves. I also have had friends coming to me asking how they could go about getting a prescription due to problems with medication or doctors wanting them off pain medication, in the hopes that it would also help them.

Do you see the UK government making further reforms on existing cannabis laws in the near future? Do you think that those in power now will make this happen? 

I’m not sure if it will happen in the near future, although i would like to hope it is coming soon. I don’t think it will happen under those currently in power though. I have had contact with my own MP who tells me that it’s already on the NHS and that it’s not an issue for the government to get involved in, it’s down to NICE. She isn’t interested in hearing what we have to say and I feel this is the same with many of those currently in power.

Do you ever feel unsafe getting illegal cannabis in England?

I have only ever had it from a person I knew before I received my prescription. I feel like if I received it illegally, I would need to make sure I trusted that person enough to make sure what I was getting was safe and not something synthetic or laced with something such as rat poison. I would be happy growing it if I knew how to.

Do you think British cannabis culture has changed much over the years?

I think there are more people accepting of cannabis use for medical reasons, especially with everyone sharing their stories of how it’s helped them. However, I still feel like we have a long way to go as there are still some people who are anti-cannabis, as they feel like it has no medical purposes and is dangerous.

Do you think the dissemination of cannabis research is reaching the right people?

I think we still have a way to go to get the research out to the right places. While there is some good research going on, we also know that cannabis has been used for thousands of years, but this doesn’t seem to get counted into the research. Research is also going into oils rather than cannabis flower, as it’s believed it’s easier to manage the prescriptions this way. For a person with chronic pain, something like the cannabis flower would work better as it’s something you can take as and when you need to, like you would with opioids. My fear with only putting us on oil is that we can only have it at set times, leaving us in pain in between doses. I also feel more Doctors need knowledge on cannabis. I had one GP tell me that many people find cannabis helps much better than opioids, but went on to tell me that he wasn’t allowed to tell me that information due to it being illegal. After he left, I spoke to my new GP about it and she always seemed against the idea, due to a lack of proof from NICE showing that it worked. She wanted me off of my opioids, so I told her I would only do so when I have a cannabis prescription. She is now really happy to hear how well I’ve gotten on with cannabis and was able to help me come off my opioids quickly.

Thanks for your time Milly, all the best!

References:

1 For more information on dissociative seizures, see this link –

https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead/

2 For general information about EDS (Ehlers Danlos Syndrome), visit – https://www.ehlers-danlos.org/

3 Interview with fibromyalgia patient and activist, Adrienne Lynch

https://greenlensblog.com/2021/01/15/adrienne-lynch-3pm-09-01-2021/

4 The official Project Twenty21 website can be found here – https://www.drugscience.org.uk/project-twenty21/