Symptoms of chronic fatigue syndrome vary with each individual, and warrant a particularly gentle approach to prescribed exercise, writes Louise Hunt
When the NICE guidelines on chronic fatigue syndrome (CFS/ME) were published in 2007 they were seen by the profession as an important step forward in acknowledging the role of physiotherapy in treating the condition.
However, since then there has been criticism among some patients that the NICE-recommended physiotherapy approach graded exercise therapy (GET) has made them feel worse.
Specialist physiotherapists are concerned that the negative feedback is due to a lack of awareness of how to apply the model appropriately.
NICE ran a public consultation last year on whether its guidelines should be changed. Before making a decision, it is awaiting publication of the results of the largest-ever UK study to compare rehabilitation approaches.
It is hoped that the PACE trial (pacing, graded activity and cognitive behaviour therapy evaluation), studying 600 people with the debilitating condition, will shed light on which interventions work best.
Results are currently being analysed.
There is evidence that exercise can exacerbate symptoms, including pain and prolonged fatigue, in CFS/ME patients.
Vigorous exercise or activity may trigger immune dysfunction and cause relapse.
In May 2010, the ME Association published the largest UK survey of the opinions of people with CFS/ME about which treatment approaches worked for them. It found that graded exercise therapy (GET) was rated the least favoured physiotherapy-led approach, with 56.5 per cent of 906 patients who had tried it reporting that it made them feel worse.
Conversely, pacing therapy, which matches activity levels to the amount of energy a patient has, was the favoured approach, with 71 per cent of the 2,137 who had tried it saying it had greatly improved their condition.
Earlier patient surveys have produced similar results.
Responding to the survey findings, Dr Charles Shepherd, medical adviser to the ME Association, says:
‘Our survey cautions that some people respond well to graded exercise therapy, but if it is applied in an inflexible manner they can get worse results.
This is often because physiotherapists don’t have a full understanding of the illness.
We consistently get reports from patients of inappropriately applied graded exercise therapy regimes.
There is a great deal of controversy over what treatment is right for CFS patients.
It has to be on an individual basis and not a “one size fits all” approach.’
Defending GET, Jessica Bavinton, who represented physiotherapy on the NICE guideline development group and is a former clinical specialist physiotherapist in ME/CFS, agrees with Dr Shepherd that treatment should be tailored to individual needs. But she says:
‘There has been a huge misunderstanding over the use of graded exercise therapy.When it is properly applied with a gentle, collaborative and patient-led approach, graded exercise therapy doesn’t cause problems.’
The NICE guidelines on GET do advise on the importance of appropriate physical assessment, mutually negotiated and meaningful goal-setting and education.
The guidelines stress: ‘It is essential that agreement and negotiation are at the very centre of a GET programme, forming a cornerstone at every stage, so that the patients feel in control of the activity and their rates of progression.
Healthcare professionals delivering a GET programme should do so with a degree of caution, recognising that for many patients with CFS/ME, GET can cause an increase in symptoms which can be distressing.’
Start low, go slow
However, in practice Ms Bavinton believes that the advice on flexibility is not always being followed, suggesting that some physiotherapists have a tendency to institute a strict programme and to increase the amount of exercise too quickly or to set too high an exercise baseline, often as a result of not fully appreciating the fluctuating nature of the illness. ‘Start low, go slow, is my main advice,’ she says.
In her view, many CFS patients would benefit from more NHS physiotherapy sessions over a longer period of time (they are usually 30 minutes per week over six weeks). Under pressure to get results, she says, there is a tendency to rush the approach.
At the same time, physios may get distracted by the different symptoms patients present with, such as headaches or specific pains, rather than seeing the bigger picture and trying to address the underlying causes of the symptom.
As a consequence of these issues, Ms Bavinton suggests it has become an area that can panic non-specialist physiotherapy services. ‘I know of some areas that are declining to treat CFS patients,’ she says.
This could become a bigger problem as there has not been major growth in the number of specialist centres since the Department of Health pump-primed funding into the condition in 2004.
In total there are 70 specialist CFS/ME services in England. These include 13 coordinating centres that employ specialists, including physios, and champion CFS support in the area, and local services with smaller teams that may or may not offer physiotherapy.
Some areas of the country are still not covered by a specialist service and, following last October’s comprehensive spending review, there is concern that some existing services may have to close, according to the charity Action for ME.
Ms Bavinton says that, ideally, patients should receive treatment at one of the specialist centres, but they are inundated with referrals, so it is important that patients can also be treated by non-specialist physios.
Pete Gladwell, clinical specialist physiotherapist at the Frenchay Hospital CFS/ME service, Bristol, says: ‘I would encourage all physiotherapists to have a broad understanding of the illness before trying to introduce graded exercise therapy as a strategy or a stand-alone treatment.
They should supplement the clinical guidelines with other resources.’ Mr Gladwell suggests seeking advice or training from the nearest specialist CFS centre and patient groups such as Action for ME, which has a pacing guide and a directory of CFS/ME services.
Training is also available from BACME (the association of healthcare professionals working in CFS/ME).
He advocates an approach combining graded exercise therapy with pacing, which is the model used at Frenchay and other CFS/ME centres.
‘We help patients to pace themselves, then gradually build up exercises through goal setting, but with a plan for relapse if need be. It seems that when people have had a poor experience of graded exercise therapy they felt they hadn’t had permission to step back,’ he says.
There is also an emphasis on self-management incorporating the principles of cognitive behavioural therapy.
He adds that, while the results of the patient group surveys seem dispiriting, because they question the effectiveness of treatment as delivered, ‘the experiences of patients who feel much worse following the exercise interventions which are reported in these surveys do need to be taken seriously.
Exploring what they are saying should help us to improve care.’ fl
A patient’s experience
Sally Richardson is one of 10 patients using the St Bartholomew’s Hospital CFS/ME housebound service, set up in 2006 to provide a diagnosis, assessment and treatment for people too severely affected to attend outpatient appointments. The pilot service is currently under review.
She sees a specialist physiotherapist in her home at agreed intervals. Telephone and email support is provided between visits.
‘Through the visits and phone calls I have been able to build up my exercises and work on my neck, which I couldn’t hold up before treatment because I was in so much pain,’ says Ms Richardson, who was diagnosed with ME in 2000 but did not receive any physiotherapy until she was referred to the service in 2008.
Being able to build a consistent relationship with a physiotherapist over a period of time means ‘there is a lot of problem solving with me, rather than being told “this is what you should be doing”.’
She says that her physiotherapist ‘understands the fine balance between when to encourage and when to hold back’, is flexible and takes a holistic interest in other aspects of her life. ‘She understands that if other problems in my life aren’t dealt with then they can hold back progress,’ Sally says.
In the swim
Part of her rehabilitation involves setting realistic goals. ‘My first was to be able to swim again.
It took me over a year to be able to swim a length,’ says Ms Richardson. She is now working towards being able to take the train from St Albans to the hospital in London to continue treatment.
Explaining the importance of the approach, Joanne Myers, highly specialised physiotherapist at the St Bartholomew’s Hospital CFS/ME service, says: ‘For patients with severe CFS/ME, exercising in an unstructured way without guidance could cause an increase in symptoms or relapse. Any past negative experiences with exercise may lead to patients being fearful of participating in exercise programmes.’
A graded and mutually agreed approach is less likely to exacerbate symptoms, she says.
‘Agreement, negotiation and effective communication are key, so that patients feel in control of their exercise programme.’
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