Has anyone yet accessed the full paper that started this thread?
Yes, it is now available through a College subscription.
I am most of the way through. The description of the illness, epidemiology, clinical features etc all seems quite reasonable if a little uncritical in one or two places. Lack of good evidence for common claims is frequently noted.
The management section on the other hand is very line-toeing with:
NICE [11] recommends graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as effective treatments for CFS/ME, and this remains the current guidance for healthcare professionals in the United Kingdom. Together these approaches combine a graded increase in physical activity, social activities and school attendance with a reha- bilitative approach that addresses thoughts and beliefs about illness, which may impair recovery [3&,45,46].
Current recommendations are based on a num- ber of studies including the PACE trial (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) from 2011 [45]. PACE looked at adults with CFS/ME, and compared the effects of specialist medical care (SMC) provided alone and alongside adaptive pacing therapy (APT), CBT or GET in a randomized controlled trial. PACE demonstrated that CBT and GET were more effective outpatient treatments for CFS/ME when added to SMC, compared with APT added to SMC or SMC alone. GET is also supported by the GETSET study [47&], a self-help graded exercise trial for adults, which reported that guided self-help inter- vention, when added to SMC, is a moderately effec- tive intervention for fatigue, but had less effect on physical functioning for those with CFS waiting for clinic therapy.
The evidence base in CYP (children and young people) is more limited. To date, no replication of a trial similar to PACE has been conducted to explore the effectiveness of GET, CBT and APT with or without SMC in treating CYP with CFS/ME. Five systematic randomizedcontrolled trials in CYP demonstrate benefit from CBT treatment [3 (Crawley review)] but there is little evidence for GET when treating CYP [48].
There exists very little research regarding effec- tive treatment for severely affected CYP and a need for further research in this area remains. A recent publication of a small-scale study looking at a home based, family focused rehabilitative approach for severely affected housebound adolescents with CFS/ME [49] demonstrated improved physical func- tioning and social adjustment after treatment but no substantial improvements in fatigue in all participants.
An area being explored is the use of online CBT with teenagers. As many affected young people cannot travel long distances and have no local specialist service, a large online CBT trial for ado- lescents (FITNET-NHS) is in progress in the United Kingdom [50&]. If online CBT is found to be accept- able, effective and affordable, FITNET-NHS may provide an answer for many affected young people with little or no access to treatment. The effective- ness of CBT may be explained by findings which show that unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with CFS [51].
In addition, the Lightning Process, originating from osteopathy combined with self-coaching and neurolinguistic programming, has been shown to be effective when provided in addition to SMC for mild to moderately affected adolescents with CFS/ME [52&]. Another small-scale study examines how young people with CFS/ME use the internet to cope with illness [53]. This study reported that partici- pants initially used official sites at the start of their illness for fact-finding, then used patient and peer- led sites more frequently and for a longer period of time with a positive effect on coping. This is an area for future development and research as the use of the internet plays an integral part in the daily lives of adolescents today.
