GETSET, the latest paper on graded exercise therapy by lead PACE investigator Peter White (et al), provides an excellent opportunity to probe into the nitty gritty of such a trial. The study required patients to administer their own GET so some of the details previously hidden by smoke and mirrors are laid bare in the explanatory booklet which served as the patients’ bible during the study.
Here are some quotes from the booklet (in blue) followed by my comments:
‘A GET programme will help you gradually improve your ability to undertake some of the physical activities that you have been unable to do since becoming unwell.’
The word ‘will’ seems optimistic here if we’re talking about ME. Though what illness are we talking about, I wonder? This guide refers to CFS/ME but the GETSET paper only mentions CFS. They need to be more specific about what they’re talking about.
‘However, a self-help guide such as this has not been officially tested so it is important that you check first with your GP or hospital specialist that a GET schedule is suitable for you. You should also continue to consult them regularly while undertaking your GET programme.’
Maybe they’re already wondering if that optimism of theirs was misplaced. This translates as ‘This therapy is totally, totally safe but make sure you tell some other doctors what you’re doing so we can blame it on them if it goes wrong.”
‘There may be a number of reasons why exercise did not work for you before. You may have started at too high a level of physical exercise, or increased the amount you did too quickly. You may have used an exercise that was too challenging for you now such as jogging, which you could do perfectly well before you became ill with CFS/ME.’
They seem to have forgotten the alternative explanation that it didn’t work because you may have ongoing pathology in your body – as illustrated by some of the biomedical research that got done with the small amount of money that wasn’t all wasted on nonsense like this.
‘The 2007 National Institute for Clinical Excellence (NICE) guidelines for the management of CFS/ME recommend GET as one of the most effective therapies for CFS/ME.’
But they’ve read a virology blog and may be having second thoughts. (Interesting that there’s no mention of the PACE trial here, by the way.)
‘After a period of illness most people find that they take some time to recover. During this recovery period we tend to avoid physical activity and rest more than usual. When we do less each day our body loses fitness and strength in a physical process called deconditioning. The result of deconditioning is that we become physically tired much sooner…’
‘The inability to function as before leads to frustration and an eventual lack of motivation for any physical activity. This starts a vicious cycle of avoiding activity and increased fatigue which then results in further deconditioning. The aim of GET is to break this cycle.’
That’s clear enough. They’re saying that CFS/ME is caused by deconditioning. This is a form of what they call ‘false ideation’. We think we’re ill but we’re not. So why does it say in the GETSET paper that ‘the relative efficacy of a behavioural intervention does not imply that chronic fatigue syndrome is caused by psychological factors’? This programme of treatment seems to be based on the supposition that it is caused by psychological factors. There seems to be incongruity at the very heart of the study. (Of course, there is plenty of evidence that ME is caused by some form of ongoing pathology rather than deconditioning. Is that why they’re fudging the issue?)
‘Regular physical activity is known to have considerable benefits: it improves the efficiency of the heart, lungs and circulation and generally helps the body to deal better with the demands of daily life.’
Unless of course some of the patients have ME. (I wonder if they’ve checked on that yet?)
‘It will be easier to keep exercising on a regular basis if you enjoy what you are doing. It could be an aerobic exercise such as walking, cycling, swimming; a home or gym based exercise programme; or just increasing things you do at home such as housework (e.g. vacuuming), gardening, or climbing stairs.’
I thought I read somewhere that research had shown aerobic exercise wasn’t good for people with ME. Or was that because they hadn’t chosen a type they enjoyed enough? If only I’d swum with dolphins instead of the vacuuming…
‘Your muscles can feel heavy after exercise, and you may feel physically tired. With CFS/ ME these feelings of physical tiredness can be more intense, but they will also help you sleep.’
Yes, as any person with ME will tell you, intense pain and exhaustion are just the thing for a good night’s sleep.
‘If you do have a setback, do not despair. They are relatively common in people with CFS/ME and you need to develop a plan to deal with them.’
You may find the longer this goes on, the more ‘relatively common’ your setbacks become. A good plan to deal with them may be to leave the trial.
‘If your setback is not CFS/ME related, in other words you have picked up an infection, you should reduce the amount of exercise you do, or even stop altogether for a short while, before returning to your GET programme. If your setback is CFS/ME related then you should try and continue exercising at your current level to the best of your ability.’
So if you get a cold, that could be serious so you need to stop for a while, but if it’s just ME, there’s no need to worry: just press on…
‘It is often incorrectly assumed that an increase in symptoms equals harm. It doesn’t.’
Glad we cleared that one up. This may explain why no harms were reported on the trial. Do they concede there’s a harm if somebody actually dies, I wonder?
‘If you continue at the exercise level you are on now you may well find that you feel no worse, and after a short while you may actually feel better. Remember that although you may not feel like exercising during a CFS/ME related setback, by resting too much you can quickly lose the physical gains that you have made. Setbacks are a normal part of recovery and so it is important to remain as positive as possible. As you get stronger you will find that you have fewer setbacks and they are less severe and last a shorter time.’
Somewhere over the rainbow…
In the next post, I’ll move on to look at the focal figure of the GETSET Guide, Julie, who has already become an internet phenomenon…