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**Terry** · 11 September 2016, 22:50

Hi SBHarley;

I don't know much about this but there are some threads on this subject.

This is what a moderator wrote in 2011:-

I'll just repeat what I said then so this thread can carry on smoothly in what can be seen as a grey area for conversation:

My advice, if you do use cannabis, is not to publically say this, as it is still illegal. If you do state this just be aware that it is completely public. Private messages are, of course, completely private.

On the public forum do feel free to discuss possible benefits you may have heard or know of, if you feel there are any, and also free to discuss the law as it stands and any changes you may like to see.

Basically the only thing we’re not allowed to do is to encourage others to break the law... so don’t give out any ‘contact numbers’ you may have acquired or publically tell others to try it! This is simply because it’s illegal for anyone to encourage someone to commit a crime. Anything else you can talk about to your hearts content and please feel free to do so here!

The drug may be illegal but the topic isn't.

I hope this clears up any grey areas and lets you all get on with the thread.

**Dabchick** · 11 September 2016, 23:26

Interesting. My late husband's neurologist introduced the subject of cannabis - I can't remember how or why now. My husband said he'd never smoked in his life and wasn't about to start. The neurologist said "There are other ways of ingesting it than smoking". Then we said something about not knowing where we would get it (in a very light-hearted way) and he said "you would only need to ask one or two people in your village to find out". Obviously something we never pursued, but i DO remember the subject being brought up.

**SBHarley** · 12 September 2016, 08:52

I guess what I'm trying to express is my suprise that the MND Association doesn't do more to publicise the beneficial effects of cannabis for sufferers of MND. These are well known and well documented.
There have been a huge number of research studies indicating that not only does cannabis alleviate symptoms such as cramping, spasticity, drooling, swallowing problems, respiratory problems, pain, insomnia, loss of appetite etc - but, because of its neuroprotectant properties, also appears to slow progression.

Experiments on mice indicate it may actually halt progression and even restore some motor function. This is borne out anecdotally by many MND sufferers who have used cannabis over long periods, for many years in many cases, with little progression.
Apart from mild intoxication there are no side effects.

Cannabis can be vaporised - inhaled using a special vaporiser easily and legally purchased online - avoiding the unpleasant effects of smoking. It can also can be ingested. The oil can be made into suppositories which allows higher consumption with less intoxication.
In places where it is legal, dispensaries can offer less intoxicating varieties which still have high concentrations of active cannabinoids and THC.

It is a scandal - when no other treatment options exist for this distressing and fatal disease - that governments worldwide continue to refuse to fund clinical studies on this drug that shows such enormous promise.
As a result, despite copious research and lots of anecdotal evidence, there are still few studies that have been carried out on cannabis and MND on human subjects.

I would like to see the MND association campaigning about this.
Why not launch a fundraising campaign to fund clinical trials?
Why not launch a petition to the UK government to legalise medicinal cannabis for MND sufferers? It is already legal for those diagnosed with Multiple Sclerosis.
Why not a Twitter campaign to raise awareness about the medicinal benefits of cannabis for MND, to help sufferers to find out about this as a treatment option and to drum up public support for legislation and for clinical trials?
The campaign could include daily tweets, a website page devoted to cannabis research and information, regular lectures to which specialists could be invited to speak on the benefits, where government ministers could come and mix with the general public to hear the speakers.

Also, although even medicinal cannabis is illegal in the UK (unlike some other countries like for example Spain, Portugal, Czech, and the US where it is now legal in I think 23 states) it IS legal in the UK for your neurologist to prescribe Sativex for MND.
Sativex IS cannabis, but for some reason the UK government has decided to license only this particular brand of cannabis ( unfortunately a particularly expensive brand).
The MND Association could publicise this fact and encourage sufferers to ask their neurologist for Sativex.
If all sufferers and their carers start asking for Sativex, and start campaigning for the legalisation of medicinal cannabis for MND and for funding for clinical research, we can really do something to combat the disease.

All the evidence suggests cannabis works, it helps, it is the ONLY drug out there that does help.
So I think the MND Association needs to get behind medicinal cannabis legislation and funding for clinical trials for MND 100%.

**Terry** · 12 September 2016, 11:31

Hi SBHarly;

It would be good to have some trials done and this would seem to be quite easy to achieve. We have had so many products and procedures that say they help followed by person experiences showing this only to find out that they don't.

Only recently a lady went on TV with her family saying that stem cell therapy had changed her Mnd with so many improvements. We found out a month later that her family went along with it because they could not face the truth upsetting their mum.

Have trials been carried out in America or else where?

There must be something out there that is better than Rilusole by now.

Love Terry

**Ellie** · 12 September 2016, 14:57

Originally posted by SBHarley View Post

Sativex IS cannabis

Sativex is a derivative of cannabis and should not be confused with natural cannabis. The "anecdotal evidence" to which you refer relates to people taking natural cannabis. Natural cannabis is more than the sum of THC & CBD.

I am not dissing Sativex, but it is not the same as natural cannabis. And I am in favour of it being available for those with MND. GW Pharma, the marketing authorisation holder, has openly said it chose MS for financial reasons alone; greater patient numbers taking the medication for longer.

**Admin_MND** · 12 September 2016, 16:39

Dear all,

Our research team respond to enquiries on the use of cannabis in MND from time to time. The information below would be typical of what we would say in a response.

Research is limited to date and primarily consists of reviews rather than original research. Perhaps the most useful of the research reviews out there is an ALSUntangled article, reviewing the benefits of cannabis in MND published in 2012.

ALSUntangled is a doctor and research led project, co-funded by the ALS Association in the USA and the MND Association. The idea is that people with MND nominate potential therapies for investigation – to get an independent view on the evidence available. There’s more information about ALS Untangled online and in our unproven treatments information sheet.

Since that review was conducted in 2012, there has been a clinical trial investigating cannabis in MND. The results of this research are being presented at this year’s annual International Symposium. However, the design of this study is specifically looking at cannabis for muscle spasticity (stiffness) rather than protecting motor neurones from dying / slowing MND progression. People on the trial used a form of cannabis as an oral spray, as opposed to smoking or eating it. The abstract for this presentation will be available on the website shortly before the Symposium in December.

If we receive enquiries about the use of cannabis in MND directly to our research email, then we do answer them and explain what we know and the evidence to date. Unfortunately we are unable to publish on the website information on every one of the many topics we receive queries on, however if a user was to search ‘cannabis’ they would find information about the clinical trial mentioned above.

Funding research into promising new avenues for treating MND is a core part of our research programme. Our research funding is ‘response mode’, we don’t specifically ask for research proposals in a particular area e.g. clinical trials of x or y, but rather research in particular broader themes. However, when we do get approached about funding trials, we do consider them. If we received an application to fund a cannabis clinical trial, then we would consider it alongside everything else.

Finally, regarding the possibility of people with MND obtaining Sativex: doctors may prescribe any medicine that they judge will be effective for their patient. This would include Sativex – there is no barrier to a doctor prescribing it to someone with MND, if their clinical judgement is that it will be beneficial. But it is a matter for the doctor’s clinical judgement whether to prescribe any medicine not licensed for use in that way.

We will always push for any proven, effective treatment for MND to be made available as quickly as possible. We monitor emerging unproven treatments and engage with NICE if and when evidence emerges that they may be effective and close to receiving marketing authorisation.

We hope this information helps.

Regards,
Forum moderator

**SBHarley** · 12 September 2016, 20:26

Thank you Moderator for your detailed reply.

Below are excerpts from a number of other studies on Cannabis and MND:-

1. Amyotrophic lateral sclerosis: delayed disease progression in mice by treatment with a cannabinoid.
http://www.ncbi.nlm.nih.gov/pubmed/15204022
Effective treatment for amyotrophic lateral sclerosis (ALS) remains elusive. Two of the primary hypotheses underlying motor neuron vulnerability are susceptibility to excitotoxicity and oxidative damage. There is rapidly emerging evidence that the cannabinoid receptor system has the potential to reduce both excitotoxic and oxidative cell damage. Here we report that treatment with Delta(9)-tetrahydrocannabinol (Delta(9)-THC) was effective if administered either before or after onset of signs in the ALS mouse model (hSOD(G93A) transgenic mice). Administration at the onset of tremors delayed motor impairment and prolonged survival in Delta(9)-THC treated mice when compared to vehicle controls. In addition, we present an improved method for the analysis of disease progression in the ALS mouse model. This logistic model provides an estimate of the age at which muscle endurance has declined by 50% with much greater accuracy than could be attained for any other measure of decline. In vitro, Delta(9)-THC was extremely effective at reducing oxidative damage in spinal cord cultures. Additionally, Delta(9)-THC is anti-excitotoxic in vitro. These cellular mechanisms may underlie the presumed neuroprotective effect in ALS. As Delta(9)-THC is well tolerated, it and other cannabinoids may prove to be novel therapeutic targets for the treatment of ALS.

2. Survey of cannabis use in patients with amyotrophic lateral sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/11467101
Marijuana has been proposed as treatment for a widening spectrum of medical conditions. Marijuana is a substance with many properties that may be applicable to the management of amyotrophic lateral sclerosis (ALS). These include analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. In addition, marijuana has now been shown to have strong antioxidative and neuroprotective effects, which may prolong neuronal cell survival. In areas where it is legal to do so, marijuana should be considered in the pharmacological management of ALS. Further investigation into the usefulness of marijuana in this setting is warranted.

3. The endocannabinoid system in amyotrophic lateral sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/18781981
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative condition characterised by the selective loss of motor neurons from the spinal cord, brainstem and motor cortex. Although the pathogenic mechanisms that underlie ALS are not yet fully understood, there is significant evidence that several neurotoxic mechanisms including excitotoxicity, inflammation and oxidative stress, all contribute to disease pathogenesis. Furthermore, recent results have established that although primarily a motor neuron specific disorder, ALS is not cell-autonomous and non-neuronal cells including astroglia and microglia play a critical role in mechanism of disease. Currently the only licensed therapy available for the treatment of ALS is the anti-glutamatergic agent Riluzole, which has limited therapeutic effects. However, there is increasing evidence that cannabinoids and manipulation of the endocannabinoid system may have therapeutic value in ALS, in addition to other neurodegenerative conditions. Cannabinoids exert anti-glutamatergic and anti-inflammatory actions through activation of the CB(1) and CB(2) receptors, respectively. Activation of CB(1) receptors may therefore inhibit glutamate release from presynaptic nerve terminals and reduce the postsynaptic calcium influx in response to glutamate receptor stimulation. Meanwhile, CB(2) receptors may influence inflammation, whereby receptor activation reduces microglial activation, resulting in a decrease in microglial secretion of neurotoxic mediators. Finally, cannabinoid agents may also exert anti-oxidant actions by a receptor-independent mechanism. Therefore the ability of cannabinoids to target multiple neurotoxic pathways in different cell populations may increase their therapeutic potential in the treatment of ALS. Recent studies investigating this potential in models of ALS, in particular those that focus on strategies that activate CB(2) receptors, are discussed in this review.

4. Cannabinol delays symptom onset in SOD1 (G93A) transgenic mice without affecting survival.
http://www.ncbi.nlm.nih.gov/pubmed/16183560
Therapeutic options for amyotrophic lateral sclerosis (ALS), the most common adult-onset motor neuron disorder, remain limited. Emerging evidence from clinical studies and transgenic mouse models of ALS suggests that cannabinoids, the bioactive ingredients of marijuana (Cannabis sativa) might have some therapeutic benefit in this disease. However, Delta(9)-tetrahydrocannabinol (Delta(9)-THC), the predominant cannabinoid in marijuana, induces mind-altering effects and is partially addictive, compromising its clinical usefulness. We therefore tested whether cannabinol (CBN), a non-psychotropic cannabinoid, influences disease progression and survival in the SOD1 (G93A) mouse model of ALS. CBN was delivered via subcutaneously implanted osmotic mini-pumps (5 mg/kg/day) over a period of up to 12 weeks. We found that this treatment significantly delays disease onset by more than two weeks while survival was not affected. Further research is necessary to determine whether non-psychotropic cannabinoids might be useful in ameliorating symptoms in ALS.

5. The CB2 cannabinoid agonist AM-1241 prolongs survival in a transgenic mouse model of amyotrophic lateral sclerosis when initiated at symptom onset.
http://www.ncbi.nlm.nih.gov/pubmed/17241118
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive motor neuron loss, paralysis and death within 2-5 years of diagnosis. Currently, no effective pharmacological agents exist for the treatment of this devastating disease. Neuroinflammation may accelerate the progression of ALS. Cannabinoids produce anti-inflammatory actions via cannabinoid receptor 1 (CB1) and cannabinoid receptor 2 (CB2), and delay the progression of neuroinflammatory diseases. Additionally, CB2 receptors, which normally exist primarily in the periphery, are dramatically up-regulated in inflamed neural tissues associated with CNS disorders. In G93A-SOD1 mutant mice, the most well-characterized animal model of ALS, endogenous cannabinoids are elevated in spinal cords of symptomatic mice. Furthermore, treatment with non-selective cannabinoid partial agonists prior to, or upon, symptom appearance minimally delays disease onset and prolongs survival through undefined mechanisms. We demonstrate that mRNA, receptor binding and function of CB2, but not CB1, receptors are dramatically and selectively up-regulated in spinal cords of G93A-SOD1 mice in a temporal pattern paralleling disease progression. More importantly, daily injections of the selective CB2 agonist AM-1241, initiated at symptom onset, increase the survival interval after disease onset by 56%. Therefore, CB2 agonists may slow motor neuron degeneration and preserve motor function, and represent a novel therapeutic modality for treatment of ALS.

6. Cannabis and amyotrophic lateral sclerosis: hypothetical and practical applications, and a call for clinical trials.
http://www.ncbi.nlm.nih.gov/pubmed/20439484
Significant advances have increased our understanding of the molecular mechanisms of amyotrophic lateral sclerosis (ALS), yet this has not translated into any greatly effective therapies. It appears that a number of abnormal physiological processes occur simultaneously in this devastating disease. Ideally, a multidrug regimen, including glutamate antagonists, antioxidants, a centrally acting anti-inflammatory agent, microglial cell modulators (including tumor necrosis factor alpha [TNF-alpha] inhibitors), an antiapoptotic agent, 1 or more neurotrophic growth factors, and a mitochondrial function-enhancing agent would be required to comprehensively address the known pathophysiology of ALS. Remarkably, cannabis appears to have activity in all of those areas. Preclinical data indicate that cannabis has powerful antioxidative, anti-inflammatory, and neuroprotective effects. In the G93A-SOD1 ALS mouse, this has translated to prolonged neuronal cell survival, delayed onset, and slower progression of the disease. Cannabis also has properties applicable to symptom management of ALS, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. With respect to the treatment of ALS, from both a disease modifying and symptom management viewpoint, clinical trials with cannabis are the next logical step. Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease.

Please note - many of the studies above are more than 5 years old. This is because of a dearth of funding for clinical trials into the beneficial effects of cannabis for those diagnosed with MND. This is despite extremely promising results from the research cited above.

Quote from 2010 study:
"Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease".

This in a nutshell is my point. When MND sufferers are currently told there is no hope, no cure and no treatment, why is promising research like this not being followed up?
Please can the MND Association start to actively campaign for research into cannabis and MND.
It is clearly urgently warranted.

**SBHarley** · 13 September 2016, 08:57

Today's news has several articles on the all party MPs call to legalise medicinal cannabis which may be of interest:-

We must legalise access to medical cannabis as a matter of urgency
Mike Barnes, Guardian
https://www.theguardian.com/commenti...nnabis-urgency

All-party group calls for legalisation of cannabis for medicinal use
https://www.theguardian.com/science/...medicinal-uses

MPs call for medical cannabis to be made legal
http://www.bbc.co.uk/news/health-37336678

'I know cannabis is illegal, but it is medicinal'
By Emma Thelwell
BBC News
http://www.bbc.co.uk/news/uk-37318935

Also worth noting that although MND is not mentioned in the list of diseases for which cannabis can be prescribed in the UK, it is already available legally on prescription for MND in 25 US states.

Does the role and remit of the MND Association not include campaigning for better facilities, rights and treatment options for sufferers of MND?
If so - please start campaigning alongside the all party group for the legalisation of medicinal cannabis.
If not, why not? Surely campaigning, along with fundraising, should be the pivotal role of the charity!

**John14** · 13 September 2016, 11:48

There is a letter in today's Times signed by the all party group pointing out that cannabis has been shown to be less risky and more effective at easing the suffering of MS and other patients than prescribed medicines. They say it is time that the UK followed the example of other countries that have legalised and regulated cannabis on prescription for medical use. The all party parliamentary group's report sets out the medicinal properties of cannabis which they say should no longer be ignored by government. They refer to the endourpain.org campaign which is pressing for reform, here is a link to their online petition:-

http://www.endourpain.org/

“I support the call to change the law to allow doctors to prescribe cannabis where they consider it would help their patients; and for patients to have their prescription honoured at the pharmacy.”

John

**njm** · 13 September 2016, 12:24

SB:
You are doing great work in bringing the cannabis research to the forum. We know it is efficacious in relieving pan and spasticity. In my youth in Southern Africa most teenagers smoked it to ease existential pain. It is still illegal there but that does not stop a large swathe of the population smoking it. What your research indicates is that , aside from pain alleviation, it could well slow progression. In fact a reading of the research suggests it may be at least as effective as Riluzole. I am all for taking something that might give me an extra 6-12 months of life. I shall definitely talk to my neurologist at my next appointment. Keep the momentum.

Charles

**SBHarley** · 13 September 2016, 22:19

Excellent article today from former UK drugs "czar" David Nutt on medical cannabis:
https://inews.co.uk/opinion/david-nu...-world-banned/

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Beneficial effects of cannabis for slowing progression and relieving symptoms

Beneficial effects of cannabis for slowing progression and relieving symptoms

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