​What is EDS?
Ehlers-Danlos Syndrome (EDS) is a group of 13 inherited connective tissue disorders that affects the connective tissue in the body (Ehlers-Danlos, 2024). Connective tissues are important to provide strength, elasticity, support, and protection in our body’s skin, joints, blood vessels, and other organs. Each type of EDS presents with its own diagnostic criteria, but common characteristics include joint hypermobility, skin hyperextensibility, and tissue fragility. Consequently, people with EDS often present with hypermobility, skin that bruises, tears or scars easily, chronic pain, fatigue, and issues with their blood vessels and organ functioning. It is difficult to know how many people have EDS, but estimates suggest that it affects 1 in 5000 to 1 in 20,000 people worldwide. Hypermobile EDS is the most common type and accounts for approximately 90% of EDS cases.
Pain is unfortunately common with EDS from the overload of musculoskeletal structures and abnormal movement patterns due to joint instability. Central sensitisation can occur too resulting in people with EDS being hypersensitive to painful stimuli (Ehlers-Danlos Society 2022). Fatigue is also extremely common and can be due to a dysregulation of the autonomic nervous system, for example low blood pressure with a fast heart rate, and gastrointestinal problems. This can all lead to a decreased exercise tolerance and difficulty performing daily tasks. Psychological symptoms such as depression, and anxiety are also common co-morbidities (Ehlers-Danlos Society 2022). 

​Pacing is the term given to the strategy of managing fatigue and other symptoms in chronic conditions including post-viral fatigue, Long Covid, fibromyalgia, chronic fatigue syndrome (ME/CFS) and many others.
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What this looks like can be slightly different for everyone, but it essentially means being strategic about how you coordinate your life scheduling rest around activities and listening to your body, stopping before your body reaches tipping point. This requires understanding your baseline (which can unfortunately fluctuate), recognising your triggers and structuring your day, week and even month accordingly.

The idea with pacing is to be one step ahead of your body to avoid flares and reduce the severity of post-exertional malaise otherwise known as PEM. PEM is a delayed exacerbation of symptoms (especially fatigue) that occurs in response to mental or physical exertion. For example, having to go out to a doctor’s appointment and doing a load of washing in one day could lead to a significant worsening of symptoms in the days following before returning to baseline. Some of you will know this pattern all too well! 

So, how can you get the most out of pacing?
Here are my 3 top tips for effective pacing.

The following is my summary of the guidelines on how to approach a return to exercise after COVID-19 infection. This information should not replace appropriate medical advice.
I will begin with my key, take-away, messages from having read through the material and will then present some material in further detail.
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Key Messages:

• Be kind to yourself in the early stages following COVID-19 diagnosis. Even if you have very minor to no symptoms, the recommendations are to prioritise rest and recovery and not to exercise during this period. Focus on nutrition, hydration and rest.
  
  
• In some circumstances it is strongly encouraged to seek medical advice prior to returning to exercise. The most notable of these are: any cardiac (heart) symptoms, moderate-severe symptoms in initial infection phase and onset of particular symptoms during activity.
  
  
• Monitor your mental health. Both the initial illness period and the recovery process can be difficult to deal with at times and if you notice yourself struggling then seek out assistance.
  
  

In the vast majority of circumstances the full return to activity should be managed slowly and may well take weeks to months to properly recover. This will require patience.

In October 2015 I was busy training for the Heysen 105km ultramarathon. After successfully completing several long distance events over the previous few years I had ramped up my training to be as prepared as possible for the Heysen. Training had been going really well, I wasn’t carrying any injuries and I was feeling strong and in the best running condition I’d ever been. The goal was to complete this event with a good mate, Barry. I’d paid my entry fee, we had Barry’s wife to crew for us and I had organised all of my nutrition and equipment for the day.

Then, just over a week before the event my 2 ½ yr old daughter became unwell, we spent a night in hospital mainly as a precaution and it turned out that she had Influenza A. The next day I also started to show the signs and symptoms of the flu. We spent the next 3-4 days on the couch together resting up and taking it easy. About 3 days before the Heysen 105 I was mostly clear of symptoms, no more fever, the muscle aches had gone, no headache. I was back to feeling well.

So I debated whether I should still do the race. My wife told me it wasn’t a good idea. From my work with other athletes, I have a fair idea of how long recovery from ultra-marathons takes (usually 4-6 weeks). I guessed that running an ultra after having the flu might extend that recovery to 6–8 weeks. But considering the time, effort, and money I had put into preparing I thought I’d give it a go. I decided that the extra few weeks it might take to recover was worth the risk, and I hoped that I’d be able to complete the event and do well.

I told myself, my wife and my mate Barry that we would take it easy to start. If things were going well then we would keep going. If things weren’t going well then I would pull the pin and stop early. I was willing to take a risk but I wasn’t willing to work myself too far into the ground.