Mindfulness and Chronic Fatigue Syndrome
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is an illness characterised by persistent or relapsing unexplained fatigue, of more than six months duration. Other symptoms of the illness may include muscular and joint pain, headache, tender lymph glands, sore throats, unrefreshing sleep, and difficulty with memory and concentration. The severity of symptoms can vary from day to day, and many people have to give up work or study, and greatly reduce their social, family or leisure activities. There is no blood test for CFS/ME, so diagnosis is based on the clinical assessment of symptoms and disability a person describes, and by ruling out all other conditions known to cause fatigue.
The causes of CFS/ME are complex and not well understood. Research suggests that the condition is unlikely to be caused by a single factor and more likely by a combination of factors, such as genetics, viral illness or other type of infections, severe or chronic stress, etc. Changes in the immune, nervous, circulatory and hormonal systems have been found in people with CFS/ME, but it is not clear if the changes are the cause or the result of the condition. Some people with CFS/ME also suffer from other health problems, such as irritable bowel syndrome, depression, and anxiety, which can exacerbate symptoms and complicate recovery.
How do you overcome CFS/ME?
While there is no known cure for CFS/ME, a full recovery is possible. Having a supportive GP and getting specialist medical advice is very important to determine what treatment approach will be best for each person. While different medications (synthetic or natural) can be helpful for some people, they do not work for everyone and may only provide a limited relief of symptoms. Rehabilitation approaches, including cognitive behavioural therapy (CBT) and graded exercise therapy (GET) that include activity scheduling, appropriate rest, graded exercise, pacing, and sleep management advice are effective for some people and work best with the specialist skills of trained health professionals.
Not all people benefit from these approaches, however, and scientists and clinicians continuously look for ways to improve treatments. One of the latest developments in treatment for CFS/ME is the addition of mindfulness training to the standard rehabilitation approach. Mindfulness is an awareness that arises from attending, without judgment, to the present moment. It helps people with chronic pain, anxiety, and depression and a range of other health issues, by increasing resilience and capacity to cope with the negative symptoms, reducing stress (which tends to aggravate chronic health problems), and increasing skills in self-care.
How does mindfulness help people with CFS/ME?
Mindfulness may help people with CFS/ME in many ways. A key aspect of mindfulness training is the capacity to face life and all its challenges, as it is. When dealing with a chronic illness like CFS/ME, coming to terms with the physical limitations and emotional stress caused by the illness can be very difficult. Mindfulness training can assist with this by developing qualities that improve coping. For example, qualities such patience, acceptance, trust, and letting go, can help someone with CFS/ME focus on their current level of functioning to manage their activities appropriately instead of focusing on the past (what they used to do) or the future (what they want to do). Focusing on the present without judging it, reduces stress and frustration, preserving precious energy that can otherwise be consumed in these emotional states.
When I worked at a CFS/ME treatment centre in London many years ago, so many people I worked with described a real frustration with the fluctuating nature of their condition. One day they could get to a supermarket to do all the food shopping, and the next day they’d feel so fatigued that they couldn’t even leave the house. Understandably, this left them very confused about what activities they could do safely without causing a flare-up of their symptoms.
Using activity diaries to work out an appropriate baseline level of daily activities with adequate rest breaks is an important step to reducing these so called “boom and bust” patterns common with CFS/ME. However, it’s really the mindful qualities of patience, trust, acceptance and letting go that enables someone make the necessary changes in their life, guided by their CFS/ME therapist. Patience to follow the program for many months; trust in their therapist and the treatment approach, acceptance of one's limitations, and letting go of the battle with their condition. In fact, it takes incredible patience to live with such an unpredictable illness, and a deep trust that over time things will get better. Letting go of one’s “old life”, which may include losing some friendships, work roles, and hobbies is incredibly painful, but a necessary step towards adjusting to life as it is now. This grief process cannot be hurried. Only when someone is ready to let go, can they move to a place of acceptance. From here they can genuinely ask themselves and their therapists “OK, what now?”, and so the healing begins.
Two other qualities developed with mindfulness training are non-striving and beginners mind. Non-striving refers to releasing the need to achieve something or get somewhere, which sits in stark contrast to the way most of us live our lives. Practicing non-striving is really about “being” without any attachment to an outcome. Learning to enjoy the simple things in life again, like watching a sunset for its beauty, or spending time in nature, can help someone with CFS/ME enjoy meaningful moments without necessarily having to “do” anything. This can be an enormous relief for someone who has been constantly reminded of what they can no longer do.
Beginners mind is cultivating a sense of curiosity and interest, a willingness to wait and see what happens without jumping ahead to anticipate the future. When life has been turned upside down with an illness such as CFS/ME, rather than predicting the worst, which might be a normal albeit unhelpful reaction, a beginner’s mind creates a space from which something important might be learned from the experience. It might sound like a cliché, but many people I have helped overcome CFS/ME have told me that the illness has been the worst and best thing that has ever happened to them. I have witnessed genuine gratitude in people who have learned so much about themselves and life itself on the path to recovery.
So what does the research on mindfulness and CFS say?
Early research studies (e.g. Rimes & Wingrove, 2011; Surawy, Roberts & Silver, 2005 ) have tested the benefits of mindfulness training for CFS/ME, and found that it reduced levels of fatigue, and improved mood, physical functioning and quality of life. While more research is needed, mindfulness certainly shows promise as an effective approach to assist with overcoming chronic fatigue syndrome.
A Mindful Way will soon be offering a six-week online course combining CBT and mindfulness training for people with CFS/ME. For more information click here. Also look out for a more detailed blog on benefits of mindfulness coming soon.
For more information about treatment of CFS/ME click here.
The Active Health Clinic in Australia offers treatment for CFS/ME at their clinic in Melbourne or online via Skype.