The Controversy of Graded Exercise

“Got ME? Just get out and exercise, say scientists.”
(Independent: 18th Feb 2011)

“Talking and exercise could cure ME.”
(Sky News: 18th Feb 2011)

Headlines like these have become increasingly common in recent years. They refer to the results of the PACE trial, a government-funded study into the safety and efficacy of graded exercise and cognitive behavioural therapies (GET/CBT) as treatments for ME.

The trial ostensibly showed that structured exercise can be used to treat ME, but ME specialists condemn the research as flawed, misleading and potentially harmful. No one denies the importance of patients remaining as active as possible within safe limits; the question is whether goal-focussed programmes that push against those limits are helpful or harmful when it comes to ME.

There are a number of in-depth analyses already available on line, but I would like to highlight some of the issues that make this seemingly innocuous subject so controversial.

1. PACE promotes the theory that ME has a primarily psychosocial cause

Despite substantial evidence for the physical basis of ME, psychiatrists behind the PACE trials believe it to be a form of personality disorder perpetuated by psychosocial factors.

The theory is that ME starts with an ordinary virus. Rather than rest the patient tries to push through their symptoms, becoming progressively worse as a result. Once forced to take bed-rest the virus swiftly resolves but the patient fails to recognise their recovery. Because earlier attempts at activity made their symptoms worse the patient remains inactive and becomes deconditioned. Deconditioning makes exercise difficult, perpetuating the false belief that the patient is ill and that exercise will harm them.

Plausible as this theory sounds, it has very little basis in fact. Attempts to prove the psychosocial model have achieved precisely the opposite: studies have shown that ME patients do not suffer from exercise phobia, are no more prone to personality disorders than patients with any other chronic illness and are no more deconditioned than healthy, sedentary controls who do not feel ill doing normal physical activities.

2. Many patients report that graded exercise made them sicker

Results of PACE seem very different to patient experiences of graded exercise. Surveys of patients found the majority claim to have had no benefit from exercise or to have wound up sicker, yet the PACE trial claimed 60% of participants improved. My own experience of graded exercise has been largely detrimental and ME specialists cite post-exertional malaise (a defining symptom of ME) as proof that graded exercise is harmful.

Physical exertion has been repeatedly shown to have a measurable effect on patients with ME, causing muscle abnormalities, neurocognitive impairments, decreased motor speed, poor reaction times, reduced peak flow and abnormal brain activity. People with ME have a reduced capacity to recover from exertion and this exercise intolerance has a cumulative effect until patients reach a point where their capacity for exertion actually decreases.

The PACE researchers acknowledge that poorly-delivered graded exercise can make patients worse but the UK has very few physiotherapists qualified to deliver specialist care. Of my six experiences of graded exercise, only one involved a therapist with experience of ME. I don’t know whether exercise, or poor execution was responsible for my own decline but my recovery has been far more consistent without graded exercise than it ever was with it.

 3. Patient selection for the PACE trials was extremely controversial

I have written before about the problems of including ME under the umbrella of chronic fatigue syndrome which has no internationally agreed diagnostic criteria. The PACE trials were based upon the Oxford criteria for CFS/ME, which focuses on fatigue as the primary symptom. The focus on idiopathic fatigue means patients with misdiagnosed or co-morbid psychiatric diagnoses (such as depression, anxiety, and somatoform disorders) were not excluded from the trial. All these disorders are known to cause fatigue and to respond to exercise and CBT.

By the PACE researchers’ own reckoning only 67% of patients met the American CDC criteria for CFS and only 51% met the London Criteria which focuses on the exercise-induced fatigue required for diagnosis in the UK. Patients with primary symptoms other than fatigue were excluded from the trial as were children and anyone with severe ME, meaning its results cannot be extrapolated beyond a certain subgroup of patients.

This is particularly important as many doctors (and the media) attempt to apply the results universally. The NICE guidelines specifically state that graded exercise is not recommended for severe ME and another trial conducted at the same time as PACE showed treatment based on CBT and GET was not beneficial to house-bound adults. Unlike PACE, the FINE trial barely featured in the press.

4. Data from the trial has been widely misrepresented

Two forms of assessment were used to measure patients’ fatigue in the trial: subjective patient questionnaires and an objective six-minute walking test. Figures quoted in the press were based upon patient perceptions of fatigue but the extent of perceived improvement was not substantially upheld in physical tests.

At the start of the trial, patients averaged a distance of approximately 300 meters in a six-minute walking test. The authors of the trial proposed a forty-five meter improvement as providing a ‘clinically useful’ outcome. The group that received medical care alone improved by twenty meters while the group that received graded exercise improved by thirty-five. As the graded exercise was in addition to medical care however, the first twenty meters of improvement may be attributed to this, meaning only fifteen meters can be attributed to the exercise itself. Few people would deny that a fifteen meter improvement after a year of therapy is hardly a miracle cure.

The furthest distance completed in the walking test was only half the average distance of a typical healthy pensioner. Fatigue levels were still higher at the end of the trial than for patients with congestive heart failure. As all the patients in the trial were receiving some form of treatment the results don’t indicate whether any of these treatments are significantly more effective than no treatment at all.

As fatigue is only one of many disabling symptoms of ME, a reduction in fatigue does not necessarily equate to a return to health or improvement in physical and social function. No data about patient recovery or deterioration has yet been published, so media claims that patients were ‘cured’ or returned to ‘normal’ following the trial are unsupported. There is no evidence that patients came off benefits or returned to work as a result of the trial, in fact receipt of benefits was found to have increased. Given ME is characterised by periods of remission and relapse it will be interesting to see whether improvements are sustained in the longer-term.

To GET or not to GET?

The truth is it is hard to know quite what to believe. Specialists on both sides of the divide offer very different advice and few GPs are well enough informed to offer a reassuring opinion. Refusal to co-operate with graded exercise can be seen as proof of a behavioural disorder but specialist treatment is not available in many areas and poorly delivered exercise treatments bring a high risk of relapse.

Every patient has heard horror stories about the dangers of graded exercise but most have heard the recovery stories too. Every sufferer I know has been told at some point that if they just do a bit of exercise they’re sure to be cured, but just because it says so in the Mail or the Times, doesn’t necessarily make it true.

At most, GET and CBT can claim to be a moderately effective form of symptom management, applicable to a particular subgroup of patients; they are certainly not the miracle cure that media pundits report them to be.

In the end it should fall to the patient to make a free and unpressured choice; whatever they decide, they are the ones who must live with the consequences.

For a more detailed analysis of the PACE trial follow this link.
Click here for a useful summary of research into the possible dangers of GET/CBT.

Over to you:

What are your opinions on the PACE trial?
Are there any specialist ME physiotherapists in your area?
Have you ever tried graded exercise therapy and did you find it helpful or harmful?

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20 Responses to The Controversy of Graded Exercise

  1. Thank you Sarah, another fantastic piece and food for thought. I’m highly skeptical of the PACE trials and certainly do not take notice of their figures of supposed improvement among patients. Being here in Ireland, there are no ME physios around me, there are no ME specialists full stop! But having come from an exercise background (before falling into the arms of ME I ran a lot, I did yoga, horse riding, I was active) I need to have some form of exercise to keep me sane! So, through my physio I was put in contact with a sports medicine doctor, who is now my consultant, she is used to dealing with patients overcoming rehab etc and more importantly, she listens. Every four months we meet and look back on the previous months and my bodies reactions to exercise, tweak our plan and go from there. Most importantly and I think this part of her doctoring is the most important. Any goals set, be it walking for six minutes every two days, is set with the strict instruction, if I am too whacked on a given day, if my body is in any way unfit to attempt its walk, I DON’T DO IT. I am NEVER to push, for me this is the key to GET, there can be no set goals and there certainly can be no pushing. Pushing for me = full blown crash, hitting the couch for a week, the pain, the nausea, the muscle weakness, all hitting me like a truck. Like you said at the end of your piece, GET is something a patient has to want/agree to do, it can not be forced on a patient and there are some patients who are possibly much too ill to even attempt any form of GET never mind have to fight off the medics who push them toward it. Wouldn’t it be great if there was an actual sheet of guidelines, every doctor had to abide by, in treating ME? Instead, every patient has to fight the medics, bizarre in a day such as ours, when medical research and technology are supposedly second to none. Where has ME gone wrong??

    • It seems that flexibility is the key. The danger of graded exercise is that it so often focusses on doing a prescribed amount of activity at preset times no matter how you may feel or what other issues may arise. I’m glad that you have found a physiotherapist you can work so well with and who doesn’t push too hard.

  2. triciaruth says:

    I’ve been successful with GET but was fortunate that I was under the support of a specialist CFS/ME service (NHS) and the emphasis on goal setting was patient lead, very small increases and not going too fast.
    It is definitely a management tool rather than a cure because as my paid (and desk bound) work increases my energy levels drop and my body’s reaction to exercise has reverted too.
    I feel it can be a useful tool when there aren’t other complications and ONLY when the increases are lead by the individual, not set by others.

    • Patient-led goals are very important. I have had helpful input from a physiotherapist who helped me find ways of mobilising without unecessary physical strain. The reason she was able to help where others didin’t is primarily because she listened to what I wanted/needed from her rather than impose her own targets for what she thought I ought to achieve.

  3. Thank you for debunking this stupid study. Your comments were well thought out.

    Why anyone would choose to stay in the lifestyle we are forced into is ridiculous. Why these researchers can’t figure that out is beyond me. But then they only look at data and don’t apply common sense.

    My insurance company who pays my disability one time wanted me to drive from Seattle, a large city, to a much smaller town an hour away to undergo neuropsych testing for two and one-half days. There was no way I could do that. I finally had to get an attorney to point out to them I was sick with severe fatigue. People just don’t understand.

    Doctors have suggested moderate exercise to me. Finally, a rheumatologist who understood, suggested 30 seconds on my stationary bike. That I could do. But not every day. Doing that put me into a flare.

    • There are times that I am so very grateful for the National Health Service in this country. We complain a lot and it has a great many failings but when I hear of the struggles American friends have with the stipulations/restrictions of insurance providers it makes me realise just how lucky we are. I’m glad your attorney managed to resolve the issue in the end but I’m sure the stress it put you through cannot have helped.

  4. dawnhosking says:

    There are no specialist ME physiotherapists in my area though I have been referred to specialist Fibromyalgia ones who were pretty knowledgeable. I couldn’t carry on with them though as there is a chance I’m now developing an arthritis. I never tried graded exercise but do try my best to pace – though haven’t done a PACE trial.

    • Pacing is the form of management I have found most helpful. I stay as active as I can within safe limits and have found that by doing this my limits slowly but steadily increase without me having to push for imporvement. I find doing small but consistent amounts of activity are far more effective than doing large tasks less often. I didn’t discuss the adaptive pacing group of the PACE trial as the post was long enough already but the form of pacing used in the trial was a structured activity programme created for the trial and not the flexible pacing most patients would recognise. This makes it likely that the results for this trial group have very little relevance for people living with ME.

      • dawnhosking says:

        I’m not familiar with the structured program, I attended a session about the flexible pacing some years ago and that is what I have been attempting to stick to. It is the only thing to date that has been helpful and as you say it can have some benefits if you do smaller amounts of activity and then rest. Best of luck with your pacing and hope you are OK today.

  5. Pingback: Repost if Graded Exercise in ME | Living with Addison's Disease

  6. Very thorough and well written article! For me I found that graded exercise along with a number of other treatments really helped me, but I also think if I had just done PACE alone, I would have hit a ceiling pretty quickly. Definitely a complicated issue!

  7. Bunny says:

    As an American, I find the stories I read about what is going on in the UK to be almost unfathomable. It’s absolutely nuts that any doc would think that exercise or talk therapy would cure an illness. Post extertional malaise is considered the hallmark of CFS here, what you call ME there. Only a complete idiot would tell a patient to just exercise or think more positively and they would get better. It’s outrageous and shocking that you have that sort of thing going on over there in this day and age. Now, docs want you to have as much movement as you can do without setbacks but there isn’t any idea of just exercising away the illness by any means or that by thinking positively would have any effect on the illness what so ever. That kind of thing would be something you would here from only an ignorant, uneducated fool. Makes me feel so sad that there is so much controversy surrounding the illness in the UK. I’m really sorry this is going on, I can’t understand it myself.

    • Psychosomatic approaches have been widespread in both the UK and US since ME was first recognised but the psychiatric lobby seem to have grown stronger and more vocal in recent years. Unfortunately psychiatric explainations for ME seem to get far more coverage in the UK press/medical literature and it seems that the more biomedical evidence that is found for the neuro-immune nature of ME the louder psychiatrists shout.

  8. Lyn Birrell says:

    Great article. I too have found the key to staying not as fatigued is NOT pushing myself especially when my body is tired. Most times I try not to do too many things at once. As soon as I do I get sick and very painful. Stress also does it to me. Thats why I strive for a simple life, not too complicated and involved. Walking is my best form of exercise. Only when I feel well. Sleep is very difficult for me, however I try to nap during the day if I am going through a difficult time.

  9. I really struggle with the idea of a simple life as I want to be out there doing everything at once. Accepting a small quiet life has possibly been the hardest part of learning to live with ME and yet it is ultimately a far healthier and potentially more fulfilling way of life if we can overcome the modern mindset that everyone must be busy doing something extremely useful all the time.

  10. Claire says:

    Thanks for a great article! Reading the comments it seems that patient-led goals and flexibility are key to success. I am currently seeing an exercise physiologist for GET. We set goals and I stick to my routine unless I have overdone it and am having a ‘recovery day’. I have to be symptom-free for almost a week before I increase my activity. This is common sense and I was doing this before I saw Florence (Active Health North Blackburn, Victoria, Australia). She is counselling me to help me avoid the push/crash cycle and educating me about sleep, diary-keeping and routine. GET may not cure me, but this is helping to make me feel more in control and more informed about the choices I make with my activities.

  11. It seems that the type of ‘graded exercise’ that seems most effective is very similar to what most patients refer to as ‘pacing’. I keep to a safe level of activity that I can repeat consistently everyday. When I notice this routine getting easier and my symptoms subsiding I generally find I am able to add a bit extra. If I cannot consistently manage the extra activity it was a step too far and I have to pull back again. This is very different to the ideas about graded exercise held by many doctors/physiotherapists but almost indistinguishable to what many patients with good experiences of GET seem to be describing.

  12. Kristina says:

    I have experienced the very harmful results of trying to do graded exercising or “pacing”. I am so sick of having this “cure-all” shoved in my face. I not only got worse, but I felt like I had somehow failed! I recently phoned a physiotherapist’s office and asked if anyone on their staff had experience working with chronic fatigue patients. She danced around the question and said something to the effect that – no, they didn’t have anyone specifically trained to work with ME/CFS patients, but all their staff have degrees in kineseology, etc. so, yes they have the experience to help me. I am currently working with a nurse who keeps talking about “cures”, “CBT”, and pacing. She isn’t hearing me. I know she thinks she is helping me, but I’m going to have to be very firm and stand my ground. This is my health at stake, not hers!

  13. Pingback: Chronic Pain and Fatigue – Exercising | my chronic life journey

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