Sports Injuries: overcoming chronic fatigue syndrome

The psychological and physical challenges of overcoming chronic fatigue syndrome

At a glance

Once dismissed as ‘all in the mind’, chronic fatigue syndrome (CFS) is now recognised as a serious and debilitating condition. Lee Crust explores how athletes can overcome CFS and provides a valuable insight based on his own experiences.

Like many athletes, I look forward to that uplifting feeling that physical activity provides and the contentment after a hard training session when you feel you have given everything. However, in 2006 my life changed when I was diagnosed with a serious illness. Since then, the way that I exercise has had to change dramatically. My experiences have also challenged my own work as a sport and exercise psychologist. In this article I will share some of the psychological and physical challenges that I faced and explain how exercise has been an integral part of regaining better health.

CFS and elite athletes

CFS (also known as ME) is a complex and still poorly understood illness that is characterised by ongoing, debilitating fatigue that has a serious impact on everyday functioning (1). CFS may be triggered by viral infection, immune dysfunction or abnormalities in hormone secretion, although there is still no conclusive evidence. Unfortunately, there has been a certain stigma attached to CFS, with a common perception that it’s simply a psychological disorder, or worse still, laziness on the part of sufferers. However, that’s beginning to change.

CFS varies in severity and not all sufferers experience identical symptoms. In the UK alone, CFS is thought to affect at least 180,000 people (2). Peter Marshall was the former world number two at squash. In 1995 Marshall appeared destined to be the best player in the world when he was struck down with the illness. He never did fulfil his full potential although he did manage to play again and win major titles following years of battling the illness. Another high profile sufferer was Anna Hemmings, a highly successful British canoeist. The illness cost her two years out of her sport, but she made a remarkable recovery and became a World Champion in 2005.

These positive stories aside, it is clear that not all people make such successful recoveries from CFS. Interestingly, clinical psychologists have observed a general picture of CFS patients tending to be perfectionists, conscientious, hardworking, somewhat neurotic with a history of pushing themselves past their limits (3,4). CFS is not going to kill you, but it can ruin your life, especially if being active is a major part of who you are.

Onset and symptoms

In April 2006 I was on a walking holiday in the Lake District area of England. I was halfway up an 800m mountain when I realised something was wrong. I am normally the kind of person who strides out ahead, eager to keep a good pace, but on this occasion I was falling behind. I could only muster one or two steps at a time before having to take a break. I had developed the classic symptoms of influenza so at that point I made the tough decision to head down – something I had never done without reaching the summit.

As well as flu-like symptoms I felt dizzy, had a pounding headache and felt completely drained. For most people, these symptoms reach a peak and then after a few days begin to improve, but for me days became weeks; weeks became months and before I knew it I had been ill for nearly five months. After walking up and down stairs at home I was completely exhausted and for quite a while I was housebound. As well as the physical symptoms I also experienced difficulties concentrating. I couldn’t read more than one page of a novel without feeling shattered. I was back and forth to see my GP having one blood test after another before eventually I was referred to a specialist clinic. It was here that I was eventually diagnosed with chronic fatigue syndrome (CFS).

Payback

Initially, I adopted the attitude that I was going to beat CFS by pushing through the pain (the athlete in me was coming out). It was only later that I realised the path to recovery was about being smarter and more flexible in my approach. I was frustrated at not being able to exercise so one day I forced myself to go to the gym. I managed to complete 20 minutes of cycling, and 20 minutes on the treadmill at a normal training intensity for me (HR = 150-160bpm). At the end of the session I didn’t feel too bad and even had a bit of a buzz from doing exercise again.

However, once the adrenaline had worn off, things changed and I had my first experience of what sufferers call ‘payback’. I had to lie down, with the muscles in my arms and legs twitching uncontrollably. This was accompanied by a feeling not dissimilar to pins and needles, but more painful. Emotionally I had hoped that by exercising I could gain some form of control over the illness, but the result left me at rock bottom and in complete despair. That exercise session had essentially resulted in me needing a week of bed rest and I realised I needed to accept that recovery was going to be a long process.

The right balance

There is no cure for CFS and full recovery is unusual (5). Currently, only cognitive behavioural therapy and graded exercise have shown some benefits for a proportion of patients in randomised controlled research (5). Some people have made spontaneous recoveries after several years while others have lived with the illness for over 30 years.

I wanted to be proactive and after attending a clinic and I was given advice on things to do in order to facilitate my recovery. The clinic at Leeds understood my desire to be more active. I was also aware that I had become de-conditioned, so starting with very low intensity, short-duration activity would be vital. After approximately eight months of having CFS, I began to notice subtle changes. I kept a diary to monitor my daily activities and started to understand the relationship between doing too much and feeling worse. The diary helped me to start ‘pacing’ – that is, getting the right balance between rest and activity, and importantly, to avoid the yo-yo pattern. At this point I was able to walk for approximately 10 minutes before needing a break, with a maximum of 20 minutes walking in any one day.

Energy Ratings

Gaining control through exercise

Exercise is not suitable for all people with CFS, and is generally to be avoided in the early stages of the illness, as it can make things worse. However, there is evidence that exercise interventions can reduce symptoms in some patients, although dropout rates tend to be high (5).

One randomised controlled study found that 55% of CFS patients reported feeling much or very much better following 12 weeks of graded exercise, in comparison to just 24% of controls who received standard medical care (6).

The starting point for me was to establish a baseline where I could function without triggering symptoms, which involved a bit of trial and error. Initially, I planned my recovery around the FITT principle (Frequency – three times a week; Intensity – approx. 3mph; Time – 10 minutes: and Type – walking).
There were two golden rules that became evident from my initial efforts: 1) I had to work well within the limits of what I thought I could achieve, and 2) I had to take a lot longer than normal to consolidate (this usually meant two weeks of the same intensity and duration before a very small increase was attempted).

After two weeks or so of walking 10 minutes without a break I increased this to 12 minutes to see how things felt. Then I walked for the same time but slightly faster. I continued with this approach, not being afraid to reduce the amount if any of the symptoms returned. I had to be flexible, but by noting the distance and time I was able to walk, I was able to chart my progress, which is one of the best ways of enhancing your motivation. Progress was very slow, but for the first time it felt like I was gaining some kind of control.

Reading the signs

During this period, I identified three types of days, which I think are perfectly suited to a traffic light analogy:

  • Green –The few days when I felt reasonably well and when I exercised; The challenge on these days was not to get carried away and do too much;
  • Red – Days when I felt extremely drained and when exercise wasn’t on the agenda. On these days I would spend a lot of time lying down;
  • Amber – The most frequent days, where it was a case of proceeding with caution. This was where I had to make a judgement call and where I learned from my mistakes.

Some days I made the right choice to exercise or rest and sometimes I suffered payback, but as time went on I became better able to make the right decision.

After about a year I was managing to go for a 30-minute walk approximately three to four times a week, with a rest day in between. Sometimes I substituted light indoor rowing for walking for a bit of variety. There was still a need to be very cautious and listen to my body. I was highly motivated but this was also dangerous as on occasions I felt quite well and got distracted from my recovery plan.
The single most important factor for me was the intensity of the exercise. Most practitioners suggest that exercise intensity should be no more than light to moderate (2) and that is exactly what I found. Monitoring my heart rate was crucial. Through trial and error, I found the best range for me was to work with a heart rate of between 120-130bpm. When I worked harder than this I usually experienced payback  for a couple of days or more!

Nutrition and CFS

One of the most controversial areas surrounding CFS is whether nutrition can help and if so, what kind of strategy works best? Punch in ‘nutrition’ and ‘CFS’ into any search engine and you’ll find hundreds of websites retailing nutritional supplements or promoting diets claiming to help combat CFS. In theory, this makes sense; after all, there’s no dispute that good nutrition is critical for long-term health and performance and we know that poor nutrition can adversely affect immune function. The problem is, however, that when it comes to properly controlled scientific studies, there’s been little hard and fast evidence that a particular nutritional strategy can help overcome CFS.

According the British Dietetic Association (BDA), which has put together a fact sheet on CFS, there are many diets (such as the anti-candida diet) that claim to improve CFS symptoms. However, although some people say they find these diets helpful, there’s a dearth of scientific evidence to support these claims, and to make matters worse, some diets can be very restrictive, which creates a lot more work and effort for the sufferer and their carers. This extra work and effort can itself lead to more stress, which is known to be detrimental for CFS sufferers. Instead, the BDA recommend that sufferers ensure their diet remains wholesome and healthy by following the normal guidelines for healthy eating, making sure there are no nutritional shortfalls and trying to avoid unwanted weight loss or gain.

Despite these caveats, some recent research seems to indicate that CFS symptoms can be helped by appropriate nutrition. A study by Swedish scientists published earlier this year found that a four-week period of probiotic supplementation improved neurocognitive function in 15 patients with severe symptoms(8). This seems to fit with other research (reported in PP 277) showing that probiotics can help reduce the drop in immunity commonly observed when athletes are overtrained(9).

Antioxidant nutrition is another promising area of research. Researchers know that ‘oxidative stress’ (the production of potentially harmful substances in the body as a result of oxygen metabolism) is linked to a number of undesirable changes in the chemistry of the central nervous system and believe these may contribute to the symptoms of CFS. Since antioxidant nutrients can help hold oxidative stress in check, researchers have looked at the effects of some antioxidant nutrients on induced chronic fatigue in animal models. A number of studies on mice have shown that antioxidants such as green tea extract(10), curcumin(11) and other natural antioxidants such as naringin(12) can significantly help reduce the symptoms of fatigue and favourably affect key biochemical markers.

Although a lot more research is needed, the good news for CFS sufferers is that both probiotics and antioxidants can be included/increased in the diet by following more general guidelines for a healthy diet – one that is very rich in brightly coloured fruits and vegetables and by including yoghurt/milk products containing probiotics.

The road to recovery

It’s now nearly three and a half years since I first became ill and while I’ve made a good recovery, I still have CFS and it remains the case of living life within certain limits. During an average day I have to pace myself carefully, taking regular short breaks and avoiding my old habits of working for hours without rest. I now feel I have about 80% of my pre-CFS energy levels, which allows me to live a relatively normal life. Many patients with CFS suffer depression (2,7), but I believe that I managed to remain optimistic and positive in part due to approaches borrowed from sport and exercise psychology.

Box 1 lists some key points that any athlete recovering from CFS should bear in mind.

Exercise and recovery

The experience of CFS has taught me that some of the attitudes seen as desirable in athletes can actually be counter-productive with CFS. It’s not about beating CFS – it’s about working with it to attain better health. In my case, the CFS appears to have been triggered by a viral infection but it occurred following an intense period in my life when I was working very long hours without sufficient rest. I believe this was a important contributing factor and my advice to all athletes is to remember that sufficient recovery is an absolutely vital part of any training schedule!

Lee Crust BSc, PhD, is a BPS chartered sport and exercise psychologist, a chartered scientist, and a Fellow of the Higher Education Academy

References

1. Annals of Internal Medicine 1994, 121, (12), 953-959
2. S. Pemberton & C. Berry. Fighting Fatigue: a practical guide for managing the symptoms of CFS/ME. London, Hammersmith Press. (2009)
3. Psychological Medicine 1994, 24, 661-671
4. Behavioural Research and Therapy 1995, 33, 535-544
5. Clinical Psychology Review 2007, (27), 885-903
6. Journal of Health Psychology 2005, (10), 245-159
7.  F. Campling & M. Sharpe. Chronic Fatigue Syndrome (CFS/ME): The facts. Oxford, OUP. (2000)
8. Nutr J 2009; 8:4doi:10.1186/1475-2891-8-4
9. Br J Sports Med 2006;40:351-354
10. J Med Food; 2005 Spring;8(1):47-52
11. Immunobiology; 2009;214(1):33-9
12. Fundam Clin Pharmacol; 2009 Jun;23(3):331-7

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