From Boots WebMD website, 1 March 2012. Story by Nicky Broyd
Study in the Netherlands finds internet treatment for adolescents with chronic fatigue syndrome is effective, but the findings are questioned by some UK experts
The first web-based therapeutic programme for teenagers with chronic fatigue syndrome (CFS or ME) is substantially more effective than usual treatments, according to new research from the Netherlands.
However, the medical advisor to the ME Association has said the findings published Online First in The Lancet are “hard to believe”.
The cause of CFS isn't known but its symptoms are well documented. They include, severe fatigue, muscular and joint pain, severe headaches and poor concentration. It is a common cause of long-term absence from school in young people.
FITNET
One of the therapies recommended for young people with CFS/ME is cognitive behavioural therapy (CBT), which aims to change the way patients think, feel and behave. However, its availability can be restricted because of a lack of specialist therapists.
In this latest study researchers in the Netherlands offered CBT modules to patients and their parents online, through a programme called FITNET which stands for Fatigue In Teenagers on the interNET. A skilled therapist was on hand to provide support through regular email consultations.
The parents of patients younger than 15 years were instructed to coach their children, whereas those of older patients were asked to encourage their children to take responsibility for their own treatment.
Lead author of the research, Dr Sanne Nijhof, from the University Medical Centre Utrecht in the Netherlands, says web-based behavioural treatments may work for teenagers because they have grown up using the Internet: “Most teens eat, sleep, and breathe the Internet, so it is not terribly surprising that they would embrace a therapy delivered in this way,” she says.
Results
The aim of the FITNET programme was for young people to return to full-time education.
In this study, researchers in The Netherlands recruited 135 adolescents who had CFS for almost two years; 68 were randomly assigned to FITNET and 67 to usual care, which mainly consisted of individual and group cognitive behavioural therapy or graded exercise therapy. Questionnaires were used to measure fatigue, physical functioning and self-rated improvement, alongside an objective check on school attendance.
The researchers found that FITNET was substantially more effective than treatment as usual at reducing symptoms. After six months of treatment, 63% of adolescents receiving the FITNET intervention reported that they had recovered, almost eight times as many as those given standard care.
Patients sent their therapists an average of 66 emails over the course of treatment, and therapists sent an average 29 email ‘consults' per patient.
UK reaction
In 2011, researchers estimated 1% of 11 to 16 year olds in England have CFS/ME – far higher than previously thought.
We asked that study's author, Dr Esther Crawley, consultant paediatrician at the Centre for Child and Adolescent Health, School of Social and Community Medicine, University of Bristol, for her reaction to the web based therapy research.
“Web based interventions are a potentially useful way for adolescents to access treatment and this well conducted trial suggests that many adolescents may benefit,” she tells us by email. “However they are probably not suitable for everybody and in this study, adolescents still required a lot of input. As the ‘usual care' is different in the UK, we would need further evidence of relative efficacy before implementation in this country.”
‘Not believable'
There was scepticism too from Dr Charles Shepherd, medical adviser to The ME Association, who commented to us via email: “I find it hard to believe that an internet-delivered cognitive behaviour therapy (CBT) programme can produce a 63% recovery rate over a six month period – even if those involved were very carefully selected.
“The success rate is far in excess of any other published clinical trial involving the use of any form of CBT in ME/CFS and is not consistent with the results from several large patient surveys carried out in the UK, the largest of which [MEA Management Survey] found that only 2.8% were ‘greatly improved' whereas 54.6% reported ‘no change' in their condition.
“It should also be noted that a wide variety of clinical presentations and pathologies come under the ME/CFS umbrella and that while CBT may be of help to some people with this diagnosis it is not an appropriate or effective form of treatment for others.”
Benefits
The authors believe the web-based treatment behavioural therapy may have important advantages over traditional therapy, with flexible treatment times and fewer barriers to delivering face-to-face care, such as travelling long distances.
“What is exciting about this trial is that these researchers have made the delivery of an effective treatment for CFS more convenient, more accessible, and possibly more cost-effective,” says chronic fatigue researcher Dr Peter White from Barts and the London School of Medicine and Dentistry.
Dr White and a colleague wrote a comment to accompany the Lancet study. He tells us greater accessibility and more frequent interaction with therapists may explain the better results for internet-delivered treatment.
He adds that if greater accessibility improves outcomes, an Internet-based treatment strategy may be as effective in adults as it is in teenagers.
“It is important to repeat this study in adults,” he says.
Charles Shepard is too polite. Instead of ‘cheap as chips’ therapies that have no real value to patients such as the above, there should be a greater emphasis on easier access to available drug treatments. There is already good clinical trial evidence that Valcyte and Rituxan offer substantial improvements in many people with ME which should now be seen as a neuro-immune disease of great compexity. There is plenty of evidence for this. We should not still be hearing about studies such as the above. The time for such drivel should be long gone. Shame on Dr White and Esther Crawley, they should know this disease better by now. As in the case of HIV/AIDS, history has shown that, in the face of knowledge that certain drugs work effectively, where patient improvement has been well documented, it is immoral and unethical to expect patients to delay recovery for the sake of blinded clinical trial evidence, or to have to suffer the likes of White and Crawley’s ignorance. Rituxan and Valcyte should be made available to British patients now, in a form which is moderately priced and in easy access tablet form. Patients are angry at the delays and apathy shown by groups supposedly meant to be helping us. We have waited too long. Charles – you have to shout louder. The time for politeness should be over.