May is M.E. Awareness Month, a campaign aimed at promoting a greater understanding of Myalgic Encephalomyelitis and the impact it has on the lives of sufferers. This year the campaign culminates in an international conference hosted by the charity ‘Invest in ME’ to be held in London at the end of the month (1).
Part 1 will look at the most common symptoms of M.E. along with common myths and misconceptions about this poorly understood disease.
What is M.E.?
Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) affects several of the body’s systems, including the immune and nervous system. The result is chronic exhaustion, cognitive problems, nausea, headaches and persistent aches and pains.
In Beating Chronic Fatigue, Dr Kristine Downing-Orr describes CFS as “the body’s inability to recover following a biological or psychological trigger” (2). Essentially the body’s very healing mechanisms break down, leaving sufferers in a state of chronic ill health.
It is thought that 250,000 people in the UK have this illness, with women between the ages of 25-50 being most commonly affected (3). However, men, women and children of all ages can develop ME/CFS.
Myths and Misconceptions
Myth 1. Chronic Fatigue is all in the mind
ME is a genuine medical illness recognised by the World Health Organisation as a neurological disease. Sufferers of CFS/ME show abnormalities in both the immune system and nervous system. It is not a psychological condition. It is not depression. Nor is it ‘attention seeking’ or a ‘cry for help’.
Myth 2. Chronic Fatigue is caused by the Epstein Barr Virus.
It is true that some cases of CFS/ME develop after an infection. However, the cause of CFS/ME is still unknown. Other theories link the disease to hormone imbalance, immune problems or psychological trauma. It is quite possible that sufferers are genetically predisposed to the disease, leaving them vulnerable if they are exposed to ‘triggers’ such as infection or stress.
Myth 3. Counselling or Cognitive Behaviour Therapy can ‘reverse’ CFS/ME
Psychological interventions can indeed help CFS sufferers to cope with their symptoms. However, this type of approach cannot ‘cure’ the illness (4).
Myth 4. Exercise can cure CFS/ME
Unfortunately exercise will not cure CFS/ME. Well meaning healthcare providers can sometimes recommend exercise for CFS/ME patients using guidelines intended for healthy people. In fact, increasing physical activity can worsen symptoms for sufferers. However, if undertaken in the right way, carefully monitored exercise programmes can be helpful for patients (5).
Myth 5. CFS/ME is difficult to diagnose
This is untrue. There are clear NICE guidelines regarding the diagnosis of CFS/ME. More recently, the Canadian criteria is being recognised as the standard diagnostic tool, and reflects the growing understanding of CFS/ME as a biological illness. This includes the following symptoms: Muscle fatigue or malaise following exertion; poor quality sleep; soreness and aches affecting different parts of the body; brain disturbances such as sensory problems or feelings of confusion (6).
Creating a greater awareness and dispelling myths about CFS/ME is essential. After all, effective treatment and management of CFS/ME depends on a clear understanding of the disease. In Part 2 we will look at some natural approaches to managing symptoms. This includes dietary recommendations and vitamin, mineral and herbal supplements designed to provide the body with the resources it needs to support healing and recovery.
1. 8th Invest in ME International ME (ME/CFS) Conference 2013. More information at http://www.investinme.org/IiME%20Conference%202013/IIMEC8%20Home.html Accessed 25/04/13.
2. Beating Chronic Fatigue: Your Step-by-Step Guide to Complete Recovery. Dr Kristina Downing-Orr. London: Piatkus. 2010.
3. Action for M.E. http://www.actionforme.org.uk/get-informed/about-me/who-does-it-affect Accessed 25/04/13.
4. Van Hoof, E. (2004). Cognitive behavioral therapy as cure-all for CFS. Journal of Chronic Fatigue Syndrome, 11, 43-47.
5. Edmonds, M., McGuire, H., & Price, J. (2004). Exercise therapy for chronic fatigue syndrome. The Cochrane Library, Issue 3, 1-22.
6. Carruthers, B.M., Jain, A.K., DeMeirleir, K.L., Peterson, D.L., Klimas, N.G., Lerner, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles, A.C.P., Sherkey, J.A., & van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. Journal of Chronic Fatigue Syndrome, 11, 7-115.