Chronic Covid – How to Support Long-Haulers
by Catherine Morris | May 28, 2021, updated about 1 year ago
Recovery will take time, and not just in an economic sense. A year into the pandemic and we're only beginning to see the long-term implications of Coronavirus and what exactly it does to the body.
While most people who contract Covid-19 make a full recovery within days or weeks, in a small fraction of cases it's not that simple. Known as 'Covid long-haulers', these patients can suffer lingering symptoms for months on end despite testing negative for the active virus.
As the world attempts to regain some normalcy, long-haulers risk being overlooked. Post-pandemic these sufferers will need support from all sides—within the medical community, at home, and in the workplace as prolonged physical and mental side-effects take their toll.
The Signs and Symptoms of Long Covid
It's hard to say exactly how many Covid cases become Covid long-haulers. Several studies have been launched to try to get a handle on how and why some people brush off the virus in a few days and some are laid up long-term, but research is ongoing and still far from drawing definite conclusions.
One of the reasons long Covid is so tough to diagnose and study is that it can manifest as a cluster of disparate symptoms that can change, resolve or re-occur over time.
One initial study from the UK found that, out of just over 4,000 people who tested positive for Covid, 13.3 percent had symptoms lasting more than 28 days while 2.3 percent were still experiencing symptoms after 12 weeks.
Dr Jack Taunton, Professor Emeritus in the Faculty of Medicine, Division of Sports Medicine at the University of British Columbia, works with athletes recovering from Covid and says it can take as long as six months for these patients to get back to full strength.
“[Long Covid] is basically an inflammatory storm. The virus stimulates the cells that produce platelets and these cause clots that can obstruct blood vessels. It typically takes 3 to 6 months [to recover] because of the damage done to the brain, the lungs, and the heart.”
Dr Taunton, who is collaborating with rehab specialist Megan Williamson to deliver a course on how fitness professionals can guide long Covid patients back to health, says treatment is very much trial and error as researchers scramble for answers.
“Nobody knows [why some people are more susceptible than others]. There are gaps in our knowledge. There's a lot of frustration and depression from patients that had this and went from doctor to doctor, therapist to therapist. Now it's being recognized as a collection of symptoms.”
With recognition comes financial support. In the US, the National Institutes of Health recently launched a US$1.15 billion initiative to study the long-term effects of Covid over the next four years. With this generous funding, researchers hope to discover who is most at risk of developing long Covid, what biological changes it triggers, and how it presents over time.
Chronic Covid can look a little different from patient to patient, but similarities have begun to emerge. The most commonly noted side-effects among long haulers, still experienced 30 to 45 days after diagnosis, are:
- Brain fog and other cognitive deficits such as memory loss and inability to concentrate
- Respiratory symptoms such as shortness of breath, wheezing, coughing, or chest pain
- Pain, mainly joint and muscle aches
- Chronic fatigue
- Loss of taste or smell
- Gastrointestinal issues
On paper it's an unpleasant list. In reality, it's a disruptive, life-altering condition that can severely reduce quality of life. And, in a small percentage of cases, things can get even darker.
Central Sensitivity Syndrome
Central Sensitivity Syndrome (CSS) is a blanket term for illnesses with a wide array of symptoms that can involve different bodily functions, but stem from the central nervous system.
The two most well-known CSS conditions are fibromyalgia and chronic fatigue syndrome (CFS), but the term can also be applied to irritable bowel syndrome, interstitial cystitis, and psychiatric disorders such as PTSD.
While it's primarily thought of as an attack on the respiratory system, the Coronavirus also damages the central nervous system and our immune defences—both of which can have severe consequences for anyone living with CSS-related ailments.
Given that CSS issues involve sensitivity in the central nervous system, any kind of stress or infection can trigger either onset of CSS or a major flare-up of a pre-existing condition, making people with fibromyalgia or CFS particularly vulnerable to long Covid. Catching the virus can lead to a cascade of CSS symptoms for these sufferers and worsening of their original prognosis.
And, as with any viral event, the infection itself can lead to CFS and related CSS issues. It's estimated that around 50 percent of people with CFS had a prior viral infection before experiencing symptoms.
Research is now addressing these concerns, looking at how the Coronavirus affects CSS and whether long Covid is a CSS in itself. It may be a while before there are any answers, but it seems likely that there's a connection judging by the similarities in non-specific symptoms.
Long Covid and Mental Health
Worn down by fatigue and other symptoms, frustrated over the slow pace of their recovery, anxious about the future, many Covid long-haulers are stuck in a stressful limbo, somewhere between newly diagnosed and fully recovered.
It's no wonder they're more prone to anxiety and depression, with some even experiencing 'survivor guilt' and/or PTSD. According to an Italian study, around 30 percent of those with severe Covid experience PTSD (although the researchers acknowledge that the sample size used in the study was small and lacked a control group).
Executive/leadership coach Jeanie Paterson has been working with both individuals and organizations since the pandemic began and says she's never seen a year like the one we've had. Paterson, who launched her private practice in 2003, says she's now seeing “significant” levels of PTSD and stress among clients and adds—
“People are really struggling. We're seeing a lot of Zoom fatigue and general Covid fatigue. We are operating in an emergency, but those are usually for short bursts, this is not. We don't really have any experience with how to sustain ourselves in these times.”
A return to pre-pandemic normalcy means a return to pre-pandemic expectations, especially in the workplace. Deadlines, presentations, meetings, the daily hustle and bustle—all this is waiting for us when we return to work, but for long-haulers getting back to the grind won’t be easy.
Chronic Covid can make returning to work difficult even six months after diagnosis, according to one study which surveyed over 3,500 Covid patients. The survey found that those who did feel up to returning were still far from their pre-Pandemic performance, taking on a reduced workload as they navigated their return to full health.
Given the number of cognitive symptoms associated with long Covid, it's hard to see how employees could keep up in a busy workplace.
Imagine ploughing through a day's work while battling:
- Memory loss
- Lack of focus
- Trouble sleeping
- Inability to concentrate
It doesn't exactly add up to a productive work day, and puts the onus on employers to be more mindful and patient with their staff's varying needs.
“I hope leaders have the empathy and the compassion to look out for their staff. An experienced, insightful leader will find ways to create a modified work schedule with one or two tasks at a time for someone who's struggling, rather than multitasking. There has to be more flexibility in the workplace, and then that workplace will become more productive.”
Long Road to Recovery
Social media has already started to meet this gap, with long-hauler support groups popping up on Facebook and other platforms as sufferers reach out to each other for group support and networking.
Employers can ensure their staff have access to these resources and more official channels, perhaps even introduce peer support therapy into the workplace, building it into the company culture to provide all workers an outlet, long-haulers or not.
“[Employers] really need to spend time checking in and creating a safe culture and climate so people can candidly voice what they are experiencing,” says Paterson. “If members of the team are falling behind, it is important to help them find some of the resources they need.
“Leaders have to work especially hard right now. We are in this together and we will help each other and support each other through it.”
Catherine Morris is an award-winning journalist with a bad case of wanderlust and a passion for all things health and wellness. Originally from Northern Ireland, she worked as a news and feature writer for media outlets in the UK, South Africa, France and the Caribbean before settling in Canada. Catherine now lives in Alberta with her husband and rescue mutt and spends her time happily exploring the great outdoors with both.