The ME Association and our medical adviser, Dr Charles Shepherd, are both cited in a Nursing Times review this week – which looks at a new DVD and booklet package produced by the Shropshire Enablement Team at Telford and Wrekin Primary Care Trust to promote the use of pacing as a symptom control strategy for ME/CFS.
The package – called SETting the Pace – is available price £10 including post and packing from: Emma Davies, Shrophshire Enablement Team, Mytton Oak, Royal Shrewsbury Hospital North, Shrewsbury SY3 8XQ.
In the Nursing Times, graduate rehabiltation assistant Sara Weston and consultant clinical psychologist Stella Townsend, who devised the package, write:
“Pacing is helpful in managing a variety of conditions, such as fatigue in MS, and in pain management. The technique allows patients to take control of their condition, manage it better and improve quality of life.
“When used to treat CFS/ME, pacing involves achieving the correct balance between rest and activity, and establishing a daily routine which can be carried out on both good and bad days. The keys to pacing, particularly with CFS/ME, are:
- Knowing when to stop and rest;
- Taking a flexible approach;
- Staying within one’s own limits.
“The technique is suitable for people with mild, moderate or severe forms of the condition.
“Many people with CFS/ME get caught in a vicious circle of “boom and bust”. They do too much on good days, which results in a subsequent increase in symptoms that means they need a period of prolonged rest. If this pattern continues, many people find the amount they can do on a good day decreases progressively. The aim of pacing is to break this pattern, enable clients to stay within their energy limits and never totally exhaust themselves.”
Among the references cited by the authors are the ME Association's 18-week long management survey – the largest survey ever carried out of the opinions of people with ME/CFS and their carers. Weston and Townsend say: “While graded exercise and CBT have little support among patients, 72% in a recent survey found pacing helpful (The ME Association, 2009).”
A book review by local retired Shropshire GP Graham Thompson, which appeared the Autumn issue in our quarterly ME Essential magazine, is also quoted – as is an article that our medical adviser Dr Shepherd wrote for The British Journal of Nursing three years ago. [The debate: myalgic encephalomyelitis and chronic fatigue syndrome. British Journal of Nursing; 15: 12, 662-669.]