ALS, otherwise known as amyotrophic lateral sclerosis (or more simply as Lou Gehrig’s Disease), is one of those rare neurological conditions with no known cure and for the most part, no known cause. It is defined as atrophy (withering away) of the muscles due to degeneration of the spinal cord nerves with which they attach.
Since there is no cure for the disease, ALS patients are generally referred to support groups or pharmaceutical medications as a means to improve their quality of life, rather than as a means to actual reverse or treat the condition. Marijuana certainly has not been proven to be a cure for ALS by any means, but if you look at some of the anecdotal evidence of patients who have used it to treat their symptoms, you’ll see many cases in which people have gotten their lives back after being given terminal prognoses and very short amounts of time to live.
Moreover, new scientific research that has been published in recent years (some of which we’ll talk about below), has shed a promising light on how marijuana might actually work to influence the course of the disease. The research has been so positive, in fact, it has galvanized several high-profile physicians and medical researchers to call for clinical trials using cannabinoids for ALS as a primary treatment.
In this article, we talk about what ALS is, what some of the most common contemporary treatments are, and how non-psychoactive CBD oil for ALS may prove to be one of the most overlooked potential treatment options in the history of the disease.
First Things First: What is ALS?
Before we get right into talking about CBD for ALS, let’s take a bit of a closer look at what the disease actually is, so that we might better understand how cannabis works to influence its pathophysiology.
If we use ancient Greek medical terminology to break the disease down into its individual component terms, we can get a good general idea of what ALS is in terms of its effects on the human body. As mentioned in the intro, ALS stands for amyotrophic lateral sclerosis, which can be broken down as follows:
- A/myo/trophic: (a) means “without” or “lacking,” (myo) means “muscle,” and (trophic) means “feeding” or “nourishment.” As such, the complete word “amyotrophic” can essentially be translated as the “lack of nourishment to muscles.” Of course, when any bodily tissue or organ system has a lack of nourishment, it will begin to wither away.
- Lateral: Lateral is a general medical term that means away from the midline of the body. In the case of ALS, it refers to the location of the spinal cord in which the nerves are affected (on the lateral or “outside” portion of the spinal cord as opposed to the “medial” or center of it.
- Sclerosis: Sclerosis is another common medical term that means “to harden.” In ALS, it refers to hardening of the nerves and surrounding tissue in the lateral region of the spinal cord.
Thus, the complete term “amyotrophic lateral sclerosis” might be loosely defined as ‘withering of the muscles due to hardening in the lateral portion of the spinal cord.’
As you might imagine, withering of the body’s muscles can have catastrophic – and often fatal – consequences. Since nerves and muscles communicate with each other to carry out essentially every function in the body (including the beating of the heart, breathing, and swallowing food), lack of muscle functioning will eventually lead to the demise of the entire body. Unfortunately, this is more or less the end result of ALS.
What Causes ALS, and Who is Most at Risk?
If scientists or doctors knew precisely what caused the onset of ALS, they would likely have more productive pharmaceutical meds available to treat it. However, the truth of the matter is that even though they know the general causes of the symptoms and have an idea of how the body’s muscles begin to atrophy, they do not know why it happens. ALS is an incredibly complex and notoriously difficult disease to try and treat.
That being said, some groups of people appear to be more prone to the onset of the condition than others. Here are a few ALS statistics that researchers have been able to observe over the decades:
- There are two types of ALS – sporadic and familial. Sporadic (SALS) is the far more common form of the disease (affecting as much as 95% of all ALS patients), and can apparently affect any random individual at any given time
Familial ALS (FALS), on the other hand, only accounts for about 5-10% of the total ALS population, and is believed to have genetic causes
- There are an estimated 20,000 people currently suffering from ALS in the United States (though this number is obviously constantly fluctuating)
- Initial ALS symptoms most commonly occur between the ages of 40 and 70
- Men and white people appear to be more prone to the condition than females and other races (in other words white males are most at risk)
- Military veterans are known to be twice as likely to develop ALS than non-veterans, though the reason for this is more or less unknown. In fact, the condition is recognized by the U.S. Department of Veterans Affairs as a “service-connected disease”
Conventional Treatment Options for ALS
As we’ve mentioned, since the underlying cause of ALS is largely unknown, the majority of the most common treatments methods are symptomatic, meaning they only treat the symptoms – not the cause.
And in fact, since the primary goal of ALS treatment is to try and improve the overall standard of living and quality of life (QOL), support groups are one of the most recommended treatment options available. The official ALS Association logs a complete network of available support groups by region, so patients can browse their options to find a group nearest to them.
In terms of medication, Rilutek (riluzole) has essentially been the pharmaceutical treatment method of choice for ALS for the past two decades, having been approved by the FDA in 1995. Among other things, the drug primarily works to slow the progression of ALS symptoms with the ultimate goal of prolonging life.
However just last year (May 2017), the FDA approved another pharmaceutical medication for the treatment of ALS. The new drug, called Radicava (edaravone), shares many similarities to riluzole in terms of its overall function, which is ultimately to prolong life and, as Dr. Jonathan Katz of the Forbes Norris MDA/ALS Research and Treatment Center puts it, “[to[ slow the decline of physical ability.”
Despite their relative effectiveness in prolonging life and improving overall QOL, these drugs have two major drawbacks: 1) they are incredibly expensive and cost-prohibitive to many, and 2) they have the potential to produce very serious side effects.
Riluzole, for instance, has been known to induce side effects such as nausea/loss of appetite, stomach pain, fever and flu-like symptoms, trouble breathing, stabbing chest pains, and shortness of breath.
Cannabis, on the other hand – and in particular CBD for ALS – has been declared by the World Health Organization as being “safe, well tolerated, and not associated with any significant adverse public health effects.”
CBD for ALS: What You Need to Know
To be clear, as we mentioned earlier in the article CBD oil is not a cure for ALS. Though it could potentially influence the molecular course of the disease and its pathophysiology, there have not to date been any clinical trials done showing its direct impact.
That being said, however, there have been miraculous anecdotal accounts of people using cannabis for ALS (some of which have been covered by major news outlets like the Tampa Bay Times and Chicago Now). In some of these individuals, it would appear that the active cannabinoids have worked to physiologically reverse the course of the disease.
The story of Cathy Jordan is perhaps the most famous of these anecdotal accounts, and you may have already heard about it as published by The Examiner (see reference link below).
If you haven’t heard the story, though, it’s a pretty unbelievable one. Cathy experienced her first symptoms of ALS over thirty years ago back in 1985, and was officially diagnosed with the disease the following year. Her neurologist at the time gave her three to five years to live, and being that this was long before the existence of riluzole, there was virtually no known treatment option available. That is, until Cathy stumbled upon cannabis and figured she had nothing to lose in trying it.
Ultimately, the decision to start using marijuana likely ended up saving her life. In fact, she has outlived the neurologist that gave her the initial 3-5 year prognosis over three decades ago. For the past thirty-plus years, Cathy has been able to live a relatively normal lifestyle as a full-blown ALS patient, which is virtually unheard of throughout the medical world. And of course, she directly attributes her current health to the healing powers of cannabis:
“When I told [my doctor] that I was smoking cannabis, he didn’t know what to do with me. He was afraid. He wouldn’t even take my blood pressure because I was using an illegal drug,” she says. “I asked my docs if they would take a drug if it was neuroprotective, an antioxidant and an anti-inflammatory. They say ‘yes’ and ask me if I know of one. Cannabis, I tell them.”
She goes on to say that “there are ALS patients associations that fight for the right of patients to die with dignity. But what about my right to life? Keeping my medicine illegal removes my right to life.”
Indeed, given the current illicit status of cannabis at the federal level, many ALS patients (particularly those who do not live in a medically-legal state) are finding it very tough to secure medical-quality products for fear of criminal punishment. And this, of course, is inexcusable as research has shown incredibly promising signs that CBD for ALS just may well be the safe and effective treatment that doctors have been looking for for decades.
Research Studies on CBD for ALS
While there have not been the all-important clinical trials done in order for a cannabis-based drug to be FDA approved for the treatment of ALS, there have been several high-profile studies published that show very positive signs.
One of these studies, published in February of 2017, observed positive effects on the condition of a 40-year old male ALS patient who self-medicated with cannabis. Additionally, researchers with the European Journal of Pharmacology were able to successfully “create” a mouse with a model form of amyotrophic lateral sclerosis, and then observe delayed progression of the disease after activation of the cannabinoid CB2 receptor, which CBD is known to have significant interaction with.
This study mirrors the results of a similar study (published in March 2004 via the World Federation of Neurology) showcasing “delayed disease progression in [ALS-afflicted] mice by treatment with a cannabinoid.”
And finally, perhaps the most important study on cannabis for ALS was published in August 2010 in the American Journal of Hospice and Palliative Care. The study presented both “hypothetical and practical applications” for the treatment of ALS with cannabinoid-based therapies, and the results were so positive that it prompted the researchers to call for action on behalf of viable clinical trials to be conducted using cannabinoids on actual diagnosed ALS patients.
Here is an official statement from the lead researchers, as pulled from the published document:
“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.”
Moreover, ProjectCBD (which is a non-profit organization dedicated to documenting worldwide research on cannabidiol), has said that according to researchers, cannabis may “…help ALS patients relieving pain, spasticity, drooling, appetite loss, and has minimal drug-to-drug interactions and toxicity.”
With scientific evidence like this readily available at our fingertips, there is absolutely no reason why any ALS patient living in the United States should not have access to quality, high-grade, medicinal, and 100% legal cannabis-based products. Fortunately, this is where CBD oil comes in.
CBD Oil for ALS: Why Cannabidiol Over “Regular” Marijuana?
We won’t go into any great depth here in this article with regard to what CBD actually is, but you might be wondering – ‘why take CBD oil for ALS rather than simply smoking “regular” marijuana?’
Well, the vast majority of people who take CBD on a daily basis – whether it be for ALS or some other condition – do so because it does not produce a high. Unlike THC, which is the “mind-altering” substance in cannabis that binds to CB1 receptors to produce psychoactive effects, CBD has more of an indirect interaction with CB2 receptors, which are located primarily throughout the body and organ tissues (including muscles) rather than the brain and central nervous system.
As such, people who take CBD oil experience no high, and the vast majority of them claim to have very little (or no) negative side effects.
And the most important part? Many companies are now manufacturing pure medicinal CBD oils and selling them online 100% legally online, being that they are sourced from hemp rather than actual marijuana. [For much more in-depth information on how CBD is sourced and why hemp is legal and marijuana is not, check out this article ].
The only problem is that there are virtually no federal regulations on cannabis (including CBD), being that it is not currently acknowledged as a medicine by the FDA. This means that a lot of “scammer” companies are taking full advantage of the industry, and selling/marketing “medicinal CBD oils” that in fact contain virtually none of the active compound.
While there are several incredibly potent and high-quality legal CBD oils out there that can be bought online and shipped directly to your doorstep, it can be super tough to find them and sort them out amidst the list of “imposters.” We typically don’t like to out-and-out recommend any one particular manufacturer, but if you are considering looking for some quality CBD oil for ALS – or for other conditions/symptoms you may have – a good place to start might be with our Best 25 CBD Oil guide that we just published for 2018.
However, it’s incredibly important to understand that none of these products are legally recognized as medicines, and thus they by no means are guaranteed to help with – or cure you of – your condition. All you can do is do your homework, find a brand that might be a good fit for you, and give it a shot to see if CBD has a positive effect on your symptoms.
Final Thoughts on CBD for ALS
Again, we reiterate the fact that no clinical studies have shown CBD to cure – or even directly treat – the symptoms or underlying causes of ALS. All we (or anyone else) can go off of at this point is the current anecdotal evidence that exists, and the small amount of scientific research that has been published on the subject.
That being said, it appears that CBD for ALS very well may be a promising and realistic treatment option in the near future, and we only hope that cannabis obtains the degree of legality that’s needed in order for researchers to study it more thoroughly.