Published in InterAction 65, Autumn 2008
InterAction looks at some of the concerns which have been voiced about graded exercise, hears from someone who made GET work for her and revisits BBC Radio 4’s Case notes programme on M.E. in children, which discussed another individualised graded exercise technique.
When we asked our survey respondents if they had tried graded activity or graded exercise therapy (GET) over the last three years, 45% of those who said they had tried it had found it helpful while 34% reported that it made them worse.
The ME Association and Tymes Trust responded with a statement which said: “When patients are made worse by GET (which is based on the flawed concept of deconditioning) this is not merely due to a problem with the way in which the therapy is delivered. Post- exertional malaise is a key diagnostic criterion for M.E./CFS. Put simply, the illness worsens as a result of physical and mental effort. Advocating progressive exertion is to show a worrying lack of knowledge about the nature of the illness itself.”
Are they right and should GET be stricken from the NHS? What about the 45% who have benefited?
In the December 2006 issue of InterAction, Professor Tony Pinching, wrote: “This is an area where it can be hard to separate facts from polemic.” Several studies on mild to moderate M.E. patients had shown that GET can be beneficial, he said, while the effect on people with moderate to severe M.E. had yet to be studied. “The relevance of formal exercise to someone who struggles with the basic activities of daily living is doubtful, so most therapists would focus on activity rather than exercise.”
The National Institute for Health and Clinical Excellence (NICE) points out that there are important differences between GET and a general exercise programme: “GET is a structured, mutually developed and monitored programme that plans gradual increments of exercise or physical activity... in contrast to a general exercise programme involving simply ‘going to the gym’ or ‘just walking a bit more’ or perhaps ‘swimming a few lengths every day’.”
What makes GET different?
In particular, says NICE, “What makes GET different from a general exercise programme is the delivery by and liaison with a trained professional (such as a physiotherapist), activity analysis before starting the programme, and mutually agreed starting points and progression.
“A general exercise programme is not evidence based... and can do patients more harm than good. Unsuccessful general exercise programmes, perhaps undertaken independently by the patient, or under brief advice from professionals not adequately trained in the use of GET, are often begun at a high, unachievable level, with an inappropriately rapid rate of progression, or without adequate professional supervision or support. An unstructured and poorly monitored or progressed exercise programme can cause significant symptom exacerbation, and can arguably make CFS/M.E. worse.”
Jane from Gloucestershire is a classic example. In 2004 she was referred to a local gym by her GP, to take part in a class for people with a variety of health problems. The gym instructor took everyone’s blood pressure and weighed them but there was little or no understanding of M.E. The instructor said participants could stop and rest at any time during the class but the exercise was completely inappropriate.
“I found the session tiring and exhausting and I was forced to rest for the remainder of the day. The following day I could hardly move but I forced myself to try again. I thought it might just be me.” She lasted three weeks. “My GP said it was worth a try. He wanted to help but didn’t have an in- depth understanding of M.E. At that stage I was clutching at anything and I was disappointed when it didn’t work.”
In the end Jane found that the best approach was to restrict herself in what she does. “Pacing,” she said. “Having small walks in the garden with my husband.”
This year, in our most recent survey, of the 722 who said that they had tried GET, 467 (65%) had been treated by a GP or NHS specialist or therapist and 255 (35%) indicated that their treatment had been managed by someone else. Who that someone else was ranged from NHS nurses to private consultants including occupational therapists, physiotherapists, an osteopath, neurologist and psychologist. A nutritional therapist, dietician and a counsellor were also mentioned. Some respondents said they were self taught or that they had been advised by relatives or other informal contacts.
Too ill to travel
Angelina, who lives in Lancashire, was too ill to travel to a specialist clinic so she was referred to a local physiotherapist who “had no understanding of M.E. or what exercises were suitable.” The physiotherapist did not undertake an initial assessment of Angelina’s health and rather than agree realistic goals she “imposed her own opinions on what she thought was best and even contacted my care worker to try to reduce the help I got at home, in an attempt to make me do things I was incapable of doing, such as cooking and cleaning.” Angelina, who is bedbound, said it set her back months.
Adrian, from the West Midlands, saw a physiotherapist who was a rehabilitation specialist. He was given an initial assessment and he found GET useful “as long as it is on your own terms and you pace yourself. Don’t over-exert yourself and know your own limits. The idea is to increase your stamina.”
Wendy, from Liverpool, didn’t find GET helpful, “But at the time it was hard to follow a routine as both my daughters were suffering from M.E. as well.” Her daughter tried GET in conjunction with physiotherapy and found it helpful, “but it is hard to determine which method helped.”
For experienced M.E. specialists, such as Professor Pinching, no one treatment holds the answer to M.E. in any case: a flexible, individual and holistic approach is essential. Our survey showed that the number of specialists who discuss GET with their patients is low compared to the number who discuss pacing.
Louisa Tee believes that it was her own research into the NICE guideline, and the willingness of her CBT therapist to listen, that helped her to gain control of her symptoms.
She became ill in October 2005 after her boyfriend brought a mild flu-like virus back from a trip to Trinidad and Tobago. He managed to shake it off but Louisa couldn’t. “He was fitter than me and I’d already had glandular fever, perhaps that’s why.”
At the time, Louisa was studying classical singing at Trinity College of Music and determined to keep going. “I’d have to hold on to a piano or piece of scenery as I was singing. I had to really push through the fatigue.” Ten months and many doctors later, she was diagnosed with CFS. “Even then I didn’t get a proper explanation. He just said, ‘Don’t get too tired, don’t let your batteries run out.’ The trouble was I was tired all the time.
“I had to give up the course. I tried to keep working but by the end of the year I couldn’t do anything. I had to leave London and go to live with my parents in Kent. My mum had to cut up my food for me. I was 28.
“I can’t stress enough how fast this came on, how physical this was, not psychological – apart from the despair at what was happening. I lost everything in a year. Before, I could run 10km. I had my singing, my friends, my life in London, my career.
“The doctor said there was a waiting list of a year to see a CBT therapist but I didn’t want to wait so my parents helped and I went private. The CBT therapist I saw had knowledge of CFS but wasn’t an expert. We worked on a mixture of GET, CBT and pacing. I read up on the NICE guideline and between us we worked out a very rigid timetable to grade up my activity.
“I would get up at the same time, 8.30am, shower, have breakfast and rest for 30 minutes. Then I would do five minutes of physical movement, the most I could do at the time – walking in the garden or stretching my muscles, whatever I was capable of doing easily. Then another 30 minute rest. Then five minutes of mental activity eg. on the computer and another 30 minute rest. Then five minutes of ‘receptive’ activity such as listening to music or watching TV before another half hour rest. I would take an hour for lunch, which my parents made for me, pottering not resting, taking time off from the regime.”
Relax during rest
It was important to relax during rest time. “My body needed rest but my mind thought I should be going faster, doing more. Meditation tapes helped.”
The afternoon was scheduled in a similar way, until a five minute period of movement around 5pm, 30 minutes of rest then an hour for dinner, more rest, short calls to friends – very short at first, not much more than a hello - and then the build up to a bath at 9.30pm and quiet time, without anything stimulating like a book or TV, until bed at 10.30pm.
“It was incredibly frustrating, sticking to such a rigid timetable but after four to six weeks I felt more comfortable with what I was doing and I increased the activity periods by two minutes, from five minutes to seven.
Difficult at first
“At first it was very difficult. I felt more tired in my rests but not that I would relapse. I persevered and over eight months I gradually increased to 15 minutes for movement activity like walking, more for talking on the phone or watching TV.
“When I was walking I had a little stop watch and I made sure that by the time it was time to stop, I was lying down.”
There was a setback when her therapist suggested that she increase her activity slots by five minutes one week. “I was so desperate to do more that I did it – but it was a one-off mistake.”
By increasing gradually, setting targets she could reach easily, she came to feel that she was in control of 98% of her symptoms. “They were not controlling me anymore.
“Being able to leave the confines of my parents’ garden, to walk on the common behind their house and back within my allotted time, was an amazing feeling, an amazing achievement.”
Louisa feels that it is important to have regular contact with a professional, a non-family member with whom you can discuss your symptoms and your frustrations.
Seeing the therapist regularly was: “A bit like going to Weight Watchers. You discuss what has happened over the week and the therapist says ‘You have done really well, why don’t you try another minute of activity this week.’
“Getting better became my job.”
She also followed strict sleep hygiene rules, going to bed at the same time, not reading in bed, doing nothing apart from sleep. “If I couldn’t sleep after 20 minutes, I would go into another room and read until my eyes felt heavy and then I would go back to bed. If I still couldn’t sleep, I would repeat the process. Whatever happened, I would get up at 8.30am.”
The sleep hygiene was hard but within a week she noticed a difference. “I was going to sleep. I was waking tired but I could cope.
“What graded exercise, pacing, CBT and sleep hygiene have done for me is that two years on, I have moved back to London and I am back on my course. OK, I am only doing one singing lesson a week but I am doing it. Admittedly I am confining myself to the house but I have integrated the lesson into my activity and rest pattern. I am not leading a normal life but compared to the way I was two years ago, this is great.
Gently does it
“It’s all about physical rehabilitation. You have to do what is easy, gently – and it has to be completely relative to your situation. If you are severely affected it’s about sitting up in bed, increasing the time in tiny little increments, not doing too much and giving your body huge shocks.
“I wanted to push myself. If I hadn’t had someone bossing me around on a timetable I would have done too much. It has to be someone who has experience of M.E. because someone else can mess you up and put you off trying the treatment again.
“Although my CBT therapist wasn’t completely familiar with the NICE guideline, she listened to me, worked with me slowly and we had great results.”
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