Long covid and post-viral fatigue syndrome – can cannabis offer new hope?

Estimated reading time: 8 minutes

Kyle Esplin, a patient who has been researching the effects of cannabis on post-viral fatigue syndrome for almost a decade, has now helped inspire a landmark long covid trial.

A decade ago, Kyle Esplin was living his dream. He was travelling the world performing on cruise ships; a fast-paced, high energy lifestyle.

But in July 2012, while living in Majorca, he came down with a respiratory viral infection and says he never returned to full health.

“It was a chest infection, which felt like a very heavy cold or flu,” Kyle, now 40, recalls.

“With the nature of my business, work is sporadic, so I kept pushing through like I’ve always done.”

Two weeks after the initial infection – and two courses of antibiotics later – he woke up in the night feeling unwell. His heart rate was erratic, dropping to 28-30 beats a minute and he lost consciousness for a few minutes. 

“It was scary. When I came around it was early in the morning but I didn’t call for an ambulance, I went back to the doctor,” Kyle says.

“He gave me a steroid injection to tone down the inflammation in my lungs and said ‘rest for a week and you should be fine’.”

But Kyle’s health still didn’t improve, and after a month of not being able to work he returned to the UK.

“I couldn’t understand why my body had failed me and was not recovering like it always had previously,” he says.

Kyle Esplin

“I was experiencing so much ongoing pain, fatigue, brain fog and crippling post exertion malaise after any attempt to walk for a few minutes.

“I started to get Postural Orthostatic Tachycardia Syndrome (POTS) and I had extreme pain between the ribs, which is also very common in the onset of the post-viral ME diagnosis.

“Looking back I feel that doctors should have picked up on those details, but instead, they told me I had probably pulled muscles from coughing.”

Kyle was sent to a physiotherapist and prescribed Ibuprofen, before paying to see a private cardiologist, but was still no further forward.

Post-viral fatigue syndrome

It took more than six months before he was eventually diagnosed with post-viral fatigue syndrome. 

Post-viral fatigue syndrome, also called myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is thought to affect as many as 265,000 people in the UK.

While there is no known cause for it, it is often triggered by a viral or bacterial infection,  a hormone imbalance or a problem with the immune system.

The main symptom is described as an overwhelming fatigue that is not eased by rest, but other symptoms include taking a long time to recover after physical activity, problems sleeping, brain fog, joint pains, heart palpitations and flu-like symptoms, among others.

Kyle was relieved to finally have a diagnosis, but as he discovered, there is currently no known  cure and treatment options are limited.

“That’s when I felt like I was at the end of the line with the doctors being of any use,” says Kyle, who was offered antidepressants to “help him sleep”.

“I was aware at the time that my health was at a fork in the road. I knew if I got this wrong, I wouldn’t have the opportunity to go back and fix it.”

Kyle continues: “I engaged with patient communities to try to understand the experiences of those who had been suffering for longer, but there didn’t seem to be any clear pattern of recovery.

“I looked over the prescribed drug list being taken by someone living long term with ME/CFS and I couldn’t help but think of the irony that you would need to be in good shape to start with to consume all of these drugs and still remain healthy. 

“I had no hope that any pharmaceutical could ever provide a solution unless there was a full paradigm shift in the approach to treatment.”

Discovering cannabis

Searching for alternative treatments, Kyle came across anecdotal claims about cannabis oil being used to treat serious conditions.

“The purpose of the endocannabinoid system is to maintain homoeostasis, to keep internal systems balanced in response to external pressures,” he says.

“A ‘total loss of homoeostasis’ seemed the most fitting description of what I was suffering from, it felt like my brain, immune system, nervous system and endocrine system were totally out of balance.”

With limited options available to him in the UK, in 2013, Kyle travelled to a clinic in Holland to try full-spectrum CBD oil.

“The best way to describe it, is that it felt like cannabis had turned down the volume on all my symptoms,” he explains.

Kyle was back performing after six months of cannabis oil

“The inflammation, pain and fatigue and other symptoms all stem from the unnecessary immune response, so when you turn down the inflammation, it turns down the volume across all of those symptoms too.

“I’d lost a lot of strength but cannabis allowed my body the chance to start to heal and recover and I tried to make the most of that opportunity.”

Taking daily cannabis oil, along with a focus on diet and being able to exercise without relapsing, Kyle’s health slowly improved.

Within six months he had made it back to the level of functionality he’d been used to, travelling and performing again, albeit taking a more cautious approach to his schedule.

Evidence for cannabis and post-viral fatigue

Several studies point to potential explanations for the effect that cannabis had on Kyle’s health.

Oxidative stress levels are known to be raised in ME/CFS and some recent studies suggest CBD may help treat a number of conditions which involve the activation of the immune system and associated oxidative stress.

The condition is also thought to cause mutations in the TRP receptors [which allow calcium and sodium to enter the cells] and changes in mitochondrial structure , which CBD may help prevent by encouraging homeostasis.

Kyle was experiencing extreme temperature regulation issues – even something as simple as the touch of a loved one’s hand could trigger pain. But studies have even suggested that the endocannabinoid system plays an important part in the regulation of visceral functions, such as food intake and thermoregulation. 

Its also known that cannabinoid receptors, Anandamide and 2-Arachidonoylglycerol (2-AG) are widely expressed in the hippocampus and several studies suggest that endocannabinoids reduce hypothalamic–pituitary–adrenal (HPA) axis activation and help facilitate stress recovery.

“The more I looked into the research the more it made sense, that modulating the endocannabinoid receptor system was the way forward to restore health and wellbeing,” says Kyle.

“Rather than trying to target each of the individual, seemingly unconnected symptoms, this mechanism offered a way to modulate my system so the symptoms shouldn’t even exist and wouldn’t need to be ‘treated’ later.”

He adds: “With my own health rebalanced, I wanted to help others who could be in a similar situation.”

New hope  

In 2019, Kyle became one of the first UK patients to receive a medical cannabis prescription, and has been on a combination of oil and flower for almost three years.  

Now, his prescribing clinician, Dr Elizabeth Iveson, a neurorehabilitation consultant based at STEPS Rehabilitation Unit in Sheffield, is set to lead a landmark trial into the effects of medical cannabis on long covid, which was, in part, inspired by Kyle’s story.

According to the Office for National Statistics (ONS), an estimated 1.3m people in the UK currently suffer from the condition and one in every 40 people with Covid-19 experiences symptoms lasting at least three months.

As Kyle watched the Covid-19 pandemic unfold, he says: “I was really concerned, having been through it, that this could become a real widespread disaster.”

Symptoms of long covid include exhaustion, pain, anxiety, insomnia and changes to the body’s autonomic system, for example a higher resting heart rate, fluctuating blood pressure and significantly reduced exercise tolerance. 

While there is no current treatment, these are similar to those such as post-viral conditions and fibromyalgia, which appear to respond well to cannabis.

The study which is being run by Drug Science will run for six months from February 2022 on 30 patients who have been diagnosed with long covid and recommended by their GP. Patients will be prescribed daily doses of Medicabilis – an oil developed by the pharmaceutical company BOD Australia.

“Approaching a decade on from when I was first struck down, when the future looked bleak for those suffering from post viral fatigue syndromes, it is truly amazing to see clinical trials using full spectrum oil to treat long covid happening in the UK,”  says Kyle.

“These results will also benefit others in the ME/CFS community who have been lacking effective treatment for so long. For my case study to have played a small role in making this happen is incredible.”

Dr Iveson commented: “Working in Rehabilitation Medicine I’m seeing more patients significantly affected by the prolonged after effects of long covid. Many are young, previously fit and healthy individuals who now struggle daily with mobility, impacted by fatigue, anxiety and a limited tolerance to exercise.

“Access to high quality holistic care and rehabilitation is needed but current NHS resources are very stretched, and often limited to the more severely affected patients. This leaves a huge number of patients in the UK experiencing debilitating symptoms and self-managing, with very little therapeutic options available to them or their GPs.

She added: “From my experience of prescribing cannabis to patients with diseases affecting multiple bodily systems and presenting with many different symptoms, there is potential that medical cannabis could also be effective as part of the management of patients with long covid.”

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