Physiotherapy journal urges gentle approach to prescribed exercise for people with ME – 19 January 2011

January 22, 2011

From ‘Frontline' magazine, journal of the Chartered Society of Physiotherapy, 19 January 2011

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.

Individual needs
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.

Supplement guidelines
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.’

14 thoughts on “Physiotherapy journal urges gentle approach to prescribed exercise for people with ME – 19 January 2011”

  1. GET is dangerous for ME patients! How many published studies are needed to prove this? They have no idea what they are doing.

    What right and qualifications does BACME have to be involved in training anyone? What are they actually telling these physiotherapist’s and doctors? Is this article part of an overall media campaign to prime people for the publication of the seriously flawed PACE trial? Is no one in Government capable of stopping this abuse? Do they care? Why do ME patients have no rights!

  2. I don’t think the problem lies merely in the physiotherapy itself. The consultation that leads to the prescription of GET could use just as much scrutiny and a perhaps a better set of guidelines for GPs.

    Some people with M.E already have a lot of responsibility riding on their shoulders and should be advised against such treatments if they cannot arrange adequate cover. Take for example, a single mother who has been diagnosed with M.E. A much greater approach to her symptoms might be a targeted pacing course which identifies key changes that can be made to make the parental role easier to cope with. (I’m sure there’s lots of practical ideas like, disposable plates and/or cutlery, choosing good microwaveable food with nutritional value, what government assistance she might be entitled to, etc)

    In addition, I can imagine parents need to keep a spare block of energy to deal with the inevitable un-expected comeuppances that tend to occur with children.

    Anyway that’s just one example but it definitely is expands on their own message that one size does not fit all. They just need to understand that the issue can start before a patient is even in the hands of the physio.

    1. What about people who are bed bound or not able to do anything else with their lives but survive, what about those who know how to pace. Pacing is not GET. Adaptive pacing is not pacing, it is still a form of GET. GET is not suitable for ME. GET is dangerous.

      The published evidence shows that ME is not de-conditioning.

      1. The pacing example I gave was a way of doing the same things someone might already be doing but using less energy. If the adaptations merely slowed the exacerbation of a patient’s symptoms, it should be assumed (in an ideal world..) under the Hippocratic oath (i.e, do no harm) that a Doctor advise against all activity.

        Also I did sort of specify it was just ‘one’ example.

        My layman’s opinion of GET equates it to Snake Oil. But it’s possible it could be carefully applied to help a patient find their personal exertion limit – as part of a heuristic approach.

        Those who would apply GET exponentially to a patient without limits or responsible data checking certainly run the terrible risk of exacerbating a patient’s condition.

        If you are capable of doing a small amount of exercise (and I know there are many who can’t) it is pretty valuable. I am able to do a small amount on occasion – back exercises that help control my back pain and maybe a short walk indoors to help prevent cramp (I get that, knife in the leg cramp pain since most of my life is spent in my bedroom).

        I’m as angry as the next patient at the patent lack of biomedical research going into the condition, whilst the best years of my life ebb away. I’m sure there are plenty of facts to support the burial of GET entirely. However, there are Doctors out there who, in my opinion, are harbouring the illusion that they might re-invent hypochondria for the 21st century. In some cases those Doctors have the ear of some influential people (Like Dr Simon Wessely, for instance).

        In which case I think it’s better to be calmly combative whilst avoiding an intellectual siege. If we create a world where Doctors either have to be right or ostracised, we’re not really encouraging the medical profession to want to come to our aid.

        1. If you are talking about pacing then you are not talking about GET. They are not the same thing, as I am sure you are aware. I am sure you are also aware that GET therapists are told to ignore a patient when they inform them that it is exacerbating their symptoms. Please see the PACE trial documents.

          As people with ME are not de-conditioned or exercise phobic, how is exercise going to make a difference? The disease itself must be tackled first. Meanwhile patients learn what is too much for them. No doctor currently can do this for them if they are unable to measure what is happening inside the body. And they won’t use the tests that show biomedical abnormalities and how they alter when a person with ME pushes beyond their threshold. They don’t have anything for people with ME in this country. They are catering for fatigue. The back exercises you are referring to and not GET.

          If we do not stand up for the rights of people with ME, more will be harmed through the irrational beliefs of a group of people who ignore the biomedical evidence of this disease. The same group of people the Government is happy to listen to because they are under the illusion it keeps the disease cheap. In the health care profession it is patients not doctors that come first. They sign up to the regulations when they join. Currently, they are left ignorant by a system that does not educate them on the reality of this disease. It is time to remove the unwanted dregs that deny the existence of published research, and to construct a hypothesis that has a chance of becoming a theory. The CBT/GET ideologists are not interested in ME, they like to focus on one symptom that multiple diseases have, fatigue.

  3. I quite welcome the article on the whole. It contains a lot that I didn’t know about the variability of services and approaches in different parts of the country for example.

    Should GET even be offered as part of any ‘support service’ for patients diagnosed with ME/CFS?

    I believe it has a place certainly. But it shouldn’t be the ONLY thing available. There should be ‘choice’ with alternatives.

    But as with all NHS provision the decision whether to proceed with ‘treatment’ should be the patients or carers. And alternative support or care should not be affected or withdrawn if a patient determines that GET is not right for them at that time.

    GET is not right for every sufferer. For some sufferers is it way too much and the risks outweigh the potential rewards.

    ‘C’est mon vie’ though and the same principle applies to everything – you do have to ‘suck it and see’. If you are able to ‘suck’ that is and there have been times when I certainly couldn’t.

    I am pleased that finally practitioners are waking up to the facts that it is the method of delivery and the lack of understanding that is often as much to blame as the therapy itself.

    In my former brilliant career we used to be heavily regulated against mis-selling and poor advice. Where is the independent body protecting sufferers I wonder?

    Regarding the article though: Hallelujah!

  4. There are two approaches used to diagnose Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The first is an objective diagnosis based on the mandatory inclusion of measurable neuroendocrine and immune abnormalities. This is being increasingly referred to as ME/CFS. The other approach is subjective and focuses on patients who are tired all the time with the cause being of psychological or of unknown origin (Sharpe et al 1991).

    This latter approach has been used, perhaps not surprisingly, by the psychiatrists overseeing the PACE study. Just to add to the confusion the methodology favoured by the CDC of America can produce a subjective diagnosis based mainly on mental and physical exhaustion of unknown origin or an objective diagnosis based on measurable worsening of symptoms some 24 hours after exercise (Fukuda et al 1996).

    Researchers using these criteria almost invariably don’t reveal which diagnosic tool they are using making comparison of results produced in different trials virtually impossible.

    Researchers using the CDC diagnostic criteria have actually identified distinct subtypes which exist under the CFS banner. They present a range of different abnormalities (Kerr, Klimas) which are indicative of conditions of different (albeit unknown) aetiology which share a common symptom.

    The design of the PACE study which merely focuses on patients who are tired all the time, due to psychological or unknown causes, clearly leaves a lot to be desired. In the context of this study Chronic Fatigue Syndrome has been reduced to the status of a socio-political label. A scientific study investigating a socio-political label would appear to be a contradiction in terms.

    Surely in today’s age of austerity taxpayers have a right to demand that their money should only be spent on trials that are well designed scientific studies. The PACE trial is clearly neither. The equivalent of this trial would be to include people in a trial with one neurological disorder and decide that on the basis of that trial, the treatment is appropriate for all the different neurological disorders that exist. I reiterate that the British taxpayer has a right to expect better than this.

    I understand that the psychiatrists overseeing the PACE trial are sincere in their belief that their version of CFS is a psychiatric illness. What I don’t understand however is their reluctance to seek evidence which could convert their belief into a testable scientific hypothesis. They could then apply the scientific method and construct a study attempting to disprove their hypothesis.

    I am aware that some medics believe that their interpretations and cognitive biases are superior to scientific evidence. Objectively, however, this is untrue. This group of psychiatrists, sometimes referred to as the Wessely school, are hardly going to be in a position to gather evidence enabling a scientific evaluation of their point of view when one of their membership deems it unethical to even look for biomedical abnormalities in people he considers to have CFS.

    In conclusion British taxpayers and those families whose loved ones are afflicted by this horrible condition are entitled to demand better than this!

  5. I am severely affected, housebound and reliant on an electric wheelchair to get around. I need all my energy just to get through the day. How on earth would I manage physiotherapy?! Professionals need to be aware that for many of those severely affected by ME just having someone round for an hour is a major drain on energy without doing anything else. Thankfully I do not have a specialist service in my local area so can manage my ME at my own plodding, slow pace, making progress when I know I am able to. It is not something that can be rushed.

  6. There is no evidence that GET works. The flawed PACE will not change that. They weren’t even looking at ME, but fatigue.

    Published evidence clearly shows that exercise, whether GET or any other form, is dangerous to those with ME. It has no place being used by people who are uneducated on the underlying biology of the disease.

    Here are some papers that cover this topic. There are plenty more, and these are not those on the underlying biology.

    Maes M, ‘Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain…’ (Neuroendocrinol Letters, 20 December 2009)

    Maes M, ‘Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways’ (BMC Medicine, 15 June 2010)

    Maes M, ‘Chronic fatigue syndrome: la bête noire of the Belgian health care system’ (Neuro Endocrinol Letters, 26 August 2009)

    Twisk F, ‘A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS)’ (Neuroendocrinology Letters, 15 September 2009)

  7. “…the combination of CBT and GET is ineffective and not evidence-based and may in fact be harmful in some patients, a view supported by various surveys carried out by patient advocate groups. ” Health-related quality of life in patients with chronic fatigue syndrome group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. (Clin Rheumatol. 2011 Jan 15. Núñez M)

    “GET comprises a regime of graded exercise, increasing incrementally over time. It has been almost universally condemned by most patient groups. A number of patient surveys have shown it to be, at best, unhelpful, and at worst, very damaging. Its application is counter‐intuitive, particularly when one of the most debilitating and well recognised symptoms of ME/CFS is post‐exertional malaise which can put some patients in bed for days after relatively trivial exertion” (Dr William Weir, Consultant Physician, November 2007)

    “I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS” (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)

    “(Graded exercise therapy) is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology. I believe that those who developed (the) graded exercise programme as a valid treatment of ME have already been soundly criticised to the Courts. I also believe scientific evidence that such a programme is against the best interests of ME patients has already been presented. The benefit of such a programme is to the interests of the insurance industry and not the patient. Graded exercise programmes may be significantly dangerous to many of these ME patients” (Dr Byron Hyde, Clinician specialising in ME, having examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th August 2008)

    GET is a hypothetical model, not supported by the published biomedical evidence!

  8. GET is not a treatment for ME/CFS.

    Never was meant to be and if it was ‘sold’ as such perhaps – given this article – recognition of the issue has finally broken the surface.

    There is no treatment for a condition that has no identified cause.

    GET helps one do more within their limits. It should be adaptable and flexible.

    I don’t know about ME being provable through test results that are routinely carried out and therefore distinguishable from other sufferers diagnosed with CFS.

    I would have thought that £32,000 of personal money spent in several countries including this one MIGHT have revealed that to me.

    As it is I am labelled CFS – it don’t bother me.

    1. There are tests and studies that show why exercise is dangerous if you have ME. Not talking about tests for diagnosis.

  9. In a previous life I trained as a PE teacher so am no stranger to exercise. GET in its worst practice is entirely counterproductive & harmful. However, if it is practiced with a real understanding of exercise physiology & a real understanding of ME it has its place as an intervention. Sadly, there seems to be vey few if any GET practitioners with this dual understanding. Far too many subscribe to the Wessely school of ME that it is a psycho/social condition which is treatable/curable? & if only we would all ‘pull ourselves together & realise we are the architects of our own misfortune & our failure to recover’ we would all be so much better & able to get back to productive work’ & too many belive the old exercise mantras “there is no gain without pain; if don’t hurt then you’re not working hard enough; and feel the burn”. All of which have long been discredited. If movement/exercise is painful it is an indication that a limit has been reached & a rest is in order, not to carry on pushing it.
    I believe that gentle physiotherapy combined with light massage can help to relieve pain & tension in joints & muscles preferably after hydrotherapy in a hydrotherapy pool on a one to one basis. Being safely supported in warm water helps with muscle & joint pain & to begin to try to move stiff muscles & joints. However, it must be done very very gradually.
    I am fortunate enough to be able to access a small private swimming pool, where I have swum for years, to do a form of hydrotherapy of my own devising. My daughter who comes with me is a qualified masseuse & so is able to work on the ‘loosening up’ effects of the pool. I know not everyone has access to this kind of resource & it will not be suitable for every ME sufferer even if it were.
    Unfortunately properly tailored & administered effective therapies are expensive to provide & I think in the current climate & with the proposed changes to the NHS budgets we will not see a change for the better.

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