close up of virus under microscope

Cannabis, Long-COVID (& ME/CFS)

In addition to the lives and livelihoods that it has stolen, Covid-19 is leaving its heavy mark on a segment of the population. However, cannabis for long-COVID can help.

COVID Long-Haulers

COVID long-haulers are patients who stayed sick beyond the short, mild illness that officials described at the beginning of the pandemic. Most were not hospitalized. Long-haulers have been diagnosed with a host of health conditions, including organ damage, MCAS, Dysautonomia, and POTS, to name a few.

A pre-print study titled, “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact” found that 69-75 percent of those who were still sick after six months had post-exertional malaise, the cardinal symptom of ME/CFS (Davis et al., 2020). ME/CFS (Myalgic encephalomyelitis/chronic fatigue) is a debilitating, multi-system disease that limits the body’s ability to tolerate normal exertion.

ME/CFS (Myalgic encephalomyelitis/chronic fatigue)

In 2015, the Institute of Medicine estimated that 2.5 million people were living with ME/CFS in the US. Since the start of the pandemic, experts have feared that the number could rise significantly, or even double. I am one of those patients.

Currently, there are no FDA-approved drugs to treat ME/CFS, but many patients report finding relief from cannabis. A body of research provides plausible explanations as to why that may be. Unfortunately, there is still no scientific consensus on the efficacy of cannabis in treating ME/CFS.

As a COVID long-hauler with ME/CFS symptoms, I have gained tremendous relief and benefits from using cannabis to treat my symptoms. However, many long-COVID patients have heart and other health issues which might not be compatible with cannabis use, at least in its traditional forms. Every long-hauler should carefully consider their health situation and do some research before using cannabis products. For instance, those suffering from POTS should take care when using CBD because it is a vasodilator and could increase fainting risk.

Cannabis

Excluding those with contraindications, my experience as a COVID long-hauler leads me to believe that there may be a growing group of patients who could gain relief from cannabis compounds as I have. The relief cannabis provides to patients could also give researchers insights into disease processes. Research is warranted because ME/CFS patients and some Covid-long haulers could represent a new market for targeted cannabis-derived medications.

My COVID Journey

It’s been just over a year since I contracted COVID. Memories of the days leading up to my initial illness seem eerie now. Ordinary trips to the store and familiar drives flash back to me like mental postcards from my pre-illness life. I got sick in early March, just before lockdown. I was out running around trying to prepare for the coming virus when I must have contracted it.

There were several days of post-nasal drip. Then one night, I noticed that I suddenly couldn’t sing along with the radio in the car. By March 11, 2020, I was unquestionably sick.

“It’s probably bronchitis,” family members told me over the phone.

I hoped they were right. A telehealth provider prescribed me an antibiotic and told me not to worry, “the Covid-19 virus isn’t in the U.S. yet.” I wasn’t eligible for a test at that time because I hadn’t traveled to Italy or had contact with anyone who had tested positive.

As the days passed...

As the days passed, my symptoms weren’t going away. I felt abnormally aware of my breathing. What if I have it? I gasped for air, heaving packages of supplies up the stairs of my apartment, and stayed winded for minutes. I tried not to think about stories I’d read about people in Italy and China. Another remote doctor cheerfully assured me that even if I did have the coronavirus, I could expect a mild illness and that most people would be totally fine.

Over the next few days, my breathing got worse, even at rest. I tried to answer a concerned friend on Facebook, but my words came out garbled. It felt like I had a balloon stretched from the inside of my right ribcage and along my right side. As I shivered through episodes of violent chills, it seemed hard to ignore that I probably had COVID-19.

March 18 - A Day I'll Never Forget

On the morning of March 18, I had a video appointment with a doctor who gave me a presumed Corona-virus diagnosis. She told me to stop taking Naproxine and switch to Tylenol because of a (later debunked) theory that NSAIDS accelerated the virus in some people. I turned a corner that day. Perhaps Tylenol was more effective at reducing my fever than Naproxine, or maybe the virus had run its course after I survived to the week mark.

Either way, I improved drastically in that 24 hours. The strange mental fog I’d been in for days started lifting, and my breathing got better at last. I knew I would live. I began a patient journey back to what I fully assumed and expected would be full health.

As the weeks passed...

As the weeks passed, some of my symptoms lingered. I still gasped violently up the stairs and felt weak. To my relief, the balloon-like swelling in my chest shrank and seemed to go away. It did come back a few days later after I got stressed, but this time it was smaller. So I began a pattern that seemed at the time like two steps forward and one step back. With every setback, I assumed that I was still moving back toward my old life. It was just happening slower than I might have liked.

Physical Activity

I had no idea that physical activity could actually hurt my recovery. So when someone suggested exercise, I decided to start walking which left me on the couch with heavy fatigue. By then, I had joined a Facebook group for Coronavirus survivors. Some people described experiencing frightening neurological symptoms after intense workouts. Others, like me, experienced severe fatigue crashes after doing mild, previously tolerated activities, such as walking or yoga.

Finding Support

I reluctantly accepted a cycle of going out one day and crashing with fatigue the next. By summer, I was part of an online community of people who had been sick for months, “long-haulers.” I found that others shared my new symptoms: electrical zaps, insomnia, rashes, GI issues, and sudden heat/sun sensitivity.

CBD

Some said that CBD oil helped them, and after getting some more opinions, I decided to try it. I purchased the Garden of Life brand from Thrive Market. I tried it just before bed and felt a little nervous because in the months after COVID, I still had some fear that I might not be able to breathe in the night. Luckily, I didn’t have any problems. When I took about 10mg during the day, I noticed that it made me feel relaxed but not sleepy. As I got used to it, I started taking full doses. I remember watching TV one day and thinking that it was the first time I’d felt normal since I’d been sick.

I tried to avoid doing too much and triggering a crash, but I’d start to feel gross at some point every evening. By the summer months, the feeling could start any time after 6 PM, but by 9 PM, it was so was overwhelming that I felt I needed some relief.

Post-COVID Disease

At that time, many medical professionals questioned whether patients could still be exhibiting symptoms so many months out from a COVID infection, so I was fortunate to find a sympathetic doctor. The kind doctor said that my EKG was normal. We discussed my ongoing issues with fatigue and shortness of breath, and he diagnosed me with “Post-COVID Disease.”

When he referred me to a lung doctor, I said to him, “I think I’m going to have a hard time with the lung test.”

“I think so too,” he said gravely.

A week later, my lung test showed normal function. So there went my early theory that my lungs were the problem. By then, I’d read about ME/CFS and asked the pulmonologist about it. He said, “That’s what we diagnose you with after we’ve tested you for everything else.”

CBD Sidenote

One interesting thing about my second doctor’s visit was the therapeutic effect that CBD seemed to have on me. It hadn’t occurred to me to take CBD before my first doctor’s appointment, and by the time my brother drove me home, I was almost too exhausted to talk coherently. After that first visit, I had heavy fatigue for a few days and moderate fatigue for a few days following that.

On the day of my second doctor’s visit, I took 50mg of CBD just before leaving the house. Although I was still tired, taking CBD before my appointment greatly reduced my fatigue and brain fog on the way home. I still had probably the same number of recovery days (about a week), but the fatigue on those days was less severe than the first time. I have used CBD and or THC on every outing since, and it has helped me significantly.

Post-Exertional Malaise (PEM)

I was finding this post-exertional malaise symptom very difficult to manage. Post-exertional malaise (PEM) is defined as a worsening of symptoms 24-72 or more hours after physical or mental exertion. This worsening of symptoms can last for days, weeks, or months, and if severe enough, can result in a permanently lowered threshold of exertional intolerance.

For instance, after my two walks in April, I could never walk that far again without suffering a deterioration in my condition. In fact, I was no longer capable of walking anything close to that again without showing signs of strain and crashing afterward. I realized that I needed to limit everything that I did, and if I failed to, I would not only feel worse, but I might also get worse.

The Search for an ME/CFS Expert

So if doctors don’t know how to treat long-COVID, I should find an ME/CFS expert, right? Well, that’s not easy. ME/CFS is a complex multi-system disease that affects millions, yet it’s not taught in medical schools. Experts are few and far between, and despite advances, ME/CFS research lacks major funding. Because common medical tests have not been advanced enough to detect their illness, patients with debilitating symptoms have often been dismissed as psychological cases.

ME/CFS and Cannabis

Although there is no scientific or medical consensus on the treatment of ME/CFS with cannabis, many patients report it helps relieve their symptoms.

The website HealthRising.org offers many helpful resources for ME/CFS and Fibromyalgia patients, including information on medical marijuana. The site allows patients to leave reviews about different cannabis products and strains and offers plenty of cannabis resources.
It makes sense that there are so many anecdotal accounts of cannabis improving symptoms in those with ME/CFS. I personally have experienced a reduction in the severity and length of PEM with the use of cannabis. It would be worthwhile for researchers to study the effect of cannabis in reducing PEM in ME/CFS and long COVID patients.

Closing Thoughts

If I hadn’t gotten sick during the pandemic, I probably wouldn’t be using marijuana today. I was familiar with it from my younger years but never intended to use it again unless I developed a serious health issue. Then I did. I sought medical and personal advice before introducing CBD and THC.

Initially, I had wanted to avoid the mental high associated with THC, but when I learned that myalgic encephalomyelitis (ME/CFS) meant brain and spinal inflammation, I decided that maybe the psychoactive part of cannabis wasn’t such a bad idea after all. With THC, the symptom relief I get is strong and immediate, but I feel best when I use both CBD and THC daily. Given that there are no approved treatments or drugs and few specialists, without cannabis, it feels like I might slip into the fog of ME/CFS and disappear. Medical marijuana seems like a way to preserve myself until I improve, or advances in research could allow me to get more specific medical help.

*This article was brought to you with the help of sativa. If you want to see the top six reasons why I like cannabis for long-COVID, check it out here.

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