Dear Editor,
I was concerned on reading the article ‘Defeatism undermines treatment of chronic fatigue syndrome’ in the February 26 issue of Irish Medical Times (www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html), which said that many doctors would get the impression that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) were the best, and even only, options for patients with myalgic encephalopathy/chronic fatigue syndrome (ME/CFS).
But a close reading of the literature could lead one to a very different conclusion.
A study by O’Dowd (2006) showed that CBT was no better than usual medical care, or education and support, in improving physical function or employment status.
The British Psychological Society has pointed out (2006) that ‘CBT is no more effective than counselling’ and that ‘there is no evidence that GET (with or without CBT) actually increases activity levels.
“Where objective measures have been employed, the increments in activity levels have been negligible and no greater than that seen in controls.”
Frequent reports of adverse reactions to CBT and GET should also be considered. A survey (n=2338) conducted for the UK Chief Medical Officer’s working group on ME/CFS found that CBT and GET were rated the worst of all treatments surveyed: 50 per cent of patients reported feeling worse as a result of a GET regime, while 93 per cent reported that CBT was either ineffective or made them worse.
In contrast, pacing of activities (where the patient can increase activity if they improve) and rest were considered the most helpful strategies (89 per cent and 91 per cent finding them helpful, respectively).
There is also evidence for pacing in two recently published, controlled studies (Goudsmit 2009; Jason 2007).
The latter found that pacing came out better than interventions based on CBT and GET.
Symptomatic relief can also be very important to patients. In the aforementioned survey, 61 per cent of patients found drug medication for pain helpful and 67 per cent found medication for sleep helpful.
Biomedical research is slowly helping to reveal the underlying pathophysiology of ME/CFS. In the meantime, many questions remain about what are the safest and most effective treatments for patients.
Given the lack of solid objective evidence for CBT and GET, and the accounts of adverse reactions, I feel that pacing is a more responsible management strategy to recommend at this time.
Orla Ní Chomhraí,
Galway ME/CFS Support Group Co-ordinator.
Knocknacarra,
Galway.
About Greg Baxter
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I recently watched a video made to train GPs to ‘deal’ with ME patients.
It was the strangest video I have seen in a long time. The person acting as the patient was doing a bar job and getting home at about mid-night and then doing a bit of work for his masters degree.
(Come on! Someone with ME wouldn’t be able to do all that!)
It was clear from this video that the people making it hadn’t a clue what ME actually is. This ‘patient’ (an actor with lots of make-up to ensure that he look tired and had horrible scraggly hair) was playing the role of someone who was ‘fatigued’.
This is completely different to the illness people with ME suffer from.
It is so important to grasp the difference. I really do recommend the Canadian Consensus document which is a brilliant attempt at defining what ME is (and isn’t).
Anyway, roll on some decent biomedical research.
Hi. I’d just like to respond to John’s comment.
First, I do not have ME/CFS. I have Crohn’s Disease. I receive good medical care.
Having experienced many years of having been undiagnosed, misdiagnosed and treated as though I had a somatoform illness, I have a tremendous amount of compassion for people DIAGNOSED or MISDIAGNOSED with ME/CFS.
I have a sibling who is diagnosed with ME and Fibromyalgia.
ME/CFS is a fluctuating condition as medical professionals worth their salt will know.
People with severe ME will be unable to participate in campaigning for better treatment. They will not be able, most of the time if at all, to read due to the neurological symptoms which cause cognitive problems and light sensitivity.
Their family, friends and relatives do the campaigning for them.
I have witnessed the horrendous signs and symptoms of a patient with severe ME. I have also witnessed the cruelty doled out to that patient by GPs.
There is a time when we realize that this is a fight to the death.
True ME is a dreadful disease.
Having the mental energy and concentration to do some mental work is not the same as being able to do it continuously, which is generally what is required in a job.
Similarly, most people with ME can do various physical tasks over the course of 24 hours. But that does not mean they could do them continously.