Pacing for Long Covid and Post-Viral Conditions

The following is based on research and evidence from people with lived experience of post-viral conditions, including our clients. This content is meant to inform and is not a substitute for medical advice. 

Have you been feeling different since the pandemic, since having the flu, or experiencing another illness? Did your energy levels suddenly change, making it harder to do the things you were used to doing and enjoyed? Does the word fatigue not fully capture the weariness you feel? If any of these sound familiar, read on… 

Millions of people have been impacted by Long Covid since the start of the pandemic, and millions more have suffered with other post-viral conditions over the preceding decades, centuries and millennia. Much is known about ME/CFS and the impact post-viral conditions have on the body. Advocacy and patient groups have been instrumental in driving research and sharing available knowledge. 

People who are impacted by ME/CFS, Long Covid and other post-viral conditions may hear about how Pacing is important to support symptom management and avoid crashes (that can often bring a worsening of symptoms and decreased energy levels). However, there is not always a clear view of what Pacing really means, or how it can be applied to different individuals, especially when people experience as many as 200 different post-viral symptoms and the severity of symptoms varies. 

The important thing to keep in mind is that Pacing is not just about rest. It is about getting the right balance of rest and activity, while keeping your system from getting overtaxed.  

So, what does this look like and what does the evidence say? 

In the early days of Long Covid there were some rehab programs that included a focus on progressive exercise. The advice was more like traditional rehabilitation work where rehab is focused on getting people in shape after an illness or injury that has left them deconditioned (or out of shape after a period of limited activity). This approach to rehabilitation makes sense for broken bones or other issues where someone needs to rest to allow their body to heal and then can introduce more or harder physical challenges over time to help get back into shape. This resulted in many people experiencing post-exertional malaise (PEM) or crashes. This left them feeling worse, set their recovery back and didn’t provide a pathway for improvement.  

The evidence is clear: Long Covid and post-viral conditions are different from conventional injuries. Long Covid and other post-viral conditions represent an ongoing systemic issue in your body. The fatigue people experience is not due to deconditioning, and rest alone does not promote the repair that is needed. Symptoms are driven by key systems in your body like your nervous system, immune system and brain-body connections not functioning as they should. Too much stimuli or activity can cause an involuntary nervous system response and result in symptoms flaring up. A tailored approach is needed to support successful symptom management, allow the systems in the body to function more effectively and provide a foundation for recovery. 

When you know the right approach to take, progress becomes possible and can also be swift. I know both sides - what it’s like to be stuck without a way forward and what it's like to have an impactful and effective improvement path. For far too long, I attempted to use traditional rehabilitation techniques to heal my Long Covid symptoms. After all, progressive exercise served me well with recovery from illness and injury in the past, so that was the only template I knew. When that approach left me feeling worse and with limited improvement, it seemed like there was no way to feel better. I lacked hope, felt unwell and was frightened about the longer-term health implications if I didn’t find a way to help my body heal. The online community is full of similar stories, including those who have been trying traditional rehab models with limited success. There are also a small, but growing, number of people who have found a path through, including those that ThriveNinety has supported on their recovery journey.  

What works… 

• A successful Pacing approach requires a blend of both activity and rest, making sure to stay within your body’s “safe” thresholds. 
• Understanding signals your body is sending and listening to your body cues can help you identify where your safe boundaries are, and to stay within a comfortable zone of activity.  
• You can reduce symptoms while creating capacity and extra ability for activity by scaling back on things that stress your body - including environmental toxins, things that are stressful or stimuli (like bright light, uncomfortable fabrics or loud noise).   
• The controversy around applying conventional rehab and progressive activity regimes to Long Covid has led to confusion about how safe it is to introduce exercise as part of rehabilitation. It can be done safely with very low intensity activity and paying close attention to your body signals to ensure you are not overtaxing your system, but guidance from experts is recommended to help find the right balance.  
• Pacing is just one aspect needed for symptom management and recovery, but it is a critical one. 
• Focusing on Pacing offers a good place to target initial recovery efforts, allowing you to build a strong foundation to work from as you move forward and begin to feel better.  

Again, successful Pacing includes listening to your body and finding the right balance of rest and activity that allows your system to get used to moving between the two again, without over-stressing your system and triggering a crash. 

We love to hear from you so please feel free to reach out with your stories. Also please do  connect if you are interested in learning more about Pacing for Long Covid and Post-viral support.   

Warmly,
Katie