28 Feb 2005 - Recomended Reading
6th February 2005
The ME Association is unable to support a new guideline on the management of ME/CFS in children and young people which was published by the Royal College of Paediatrics and Child Health (RCPCH) in January.
Having given careful consideration to the published guideline, and having in October last year submitted a detailed and itemised response to the draft put out for consultation, we believe the document contains fundamental flaws not least in its emphasis on psychological factors in causation and in the use of behavioural interventions (ie cognitive behavioural therapy and graded exercise therapy) in the management of the condition.
The ME Association is unable to support a new guideline on the management of ME/CFS in children and young people which was published by the Royal College of Paediatrics and Child Health (RCPCH) in January.
Having given careful consideration to the published guideline, and having in October last year submitted a detailed and itemised response to the draft put out for consultation, we believe the document contains fundamental flaws not least in its emphasis on psychological factors in causation and in the use of behavioural interventions (ie cognitive behavioural therapy and graded exercise therapy) in the management of the condition.
Royal College of Paediatrics and Child Health guideline on the management of ME/CFS
Posted 6 February 2005:
The Royal College of Paediatrics and Child Health (RCPCH) published their long-awaited guideline for the management of children and young people with ME/CFS in January. According to the RCPCH, the guideline has been developed '...to help paediatricians develop knowledge about the condition and provide guidance on how to diagnose and manage the illness underpinned by the best available research evidence'.
The guideline has been developed by a multidisciplinary group of heath professionals, along with an ME/CFS charity representative (Dr. Jill Moss from AYME) and a head teacher.
Last September The MEA was asked to comment on a final draft of the guideline. However, it was clearly pointed out by the RCPCH that key recommendations contained in the draft which has been based on either an appraisal of published research evidence or (more often) represented the consensus of a broad group of stakeholders who had also been asked to comment could not be changed at this point, even if The MEA expressed strong objections.
The MEA responded in October by stating that although we felt there was a great deal of useful information in the guideline, we would be unable to endorse the overall content because of fundamental flaws in the way it dealt with the key issues of psychological factors in causation and the use of behavioural interventions (ie cognitive behaviour therapy/CBT and graded exercise therapy/GET) in management. In particular, we strongly disagreed with the way in which some parts of the guideline over-emphasised the importance of psychological factors in causation, along with what we felt were unbalanced recommendations regarding the use of CBT and GET the latter conclusions being largely based on extrapolating the results of research studies carried out in adults rather than children. Neither was there any real attempt to discuss the genuine criticisms that had been made about the trials involving CBT and GET.
We therefore argued that the RCPCH should, instead, adopt the trident approach used in the Chief Medical Officer's report whereby the evidence of patients and clinicians was given roughtly equal weight to the findings of a small number of randomised clinical trials involving CBT and GET an approach we felt was vital given the fact that there are disastrous instances where children have seriously relapsed as a result of inappropriate psychiatric interventions or over-enthusiastic activity programmes.
The MEA also expressed concern about some of the recommendations relating to the use of drugs in children with ME/CFS and the almost complete lack of information and guidance on practical management of this illness by health professionals working in primary care (ie general practice).
In addition, we made a number of constructive suggestions aimed at improving the section on management and then went on to provide the RCPCH with information and references to treatment trials of which they had been unaware.
We are disappointed to say that having reviewed the final version of the guideline, our position remains the same. There is still without doubt a great deal of useful information, especially in relation to recognition of ME/CFS in childhood, recommendations on how children with a possible diagnosis of ME/CFS should be clinically assessed, and how educational issues should be dealt with.
We are also pleased to note that some of the very unhelpful comments about pychological factors have been removed or altered as a result of our comments. But we still cannot give our overall endorsement to the guideline because of the failure by the RCPCH to make any significant changes to the unbalanced opinions and recommendations contained in the section on behavioural interventions.
* The guideline was officially launched at the House of Lords on February 3. This was followed by publicity in the press, TV and medical publications.
* A paper copy of the guideline has been sent to every paediatrician in the country.
* The RCPCH website http://www.rcpch.ac.uk/publications/recent_publications/Latest%20news/CFS.pdf has a copy of the guideline, along with an accompanying patient leaflet, available to download
Click on the ME Links page to find link to ME Association website , to read our lengthy, October 2004 response to the consultative document,
Posted 6 February 2005:
The Royal College of Paediatrics and Child Health (RCPCH) published their long-awaited guideline for the management of children and young people with ME/CFS in January. According to the RCPCH, the guideline has been developed '...to help paediatricians develop knowledge about the condition and provide guidance on how to diagnose and manage the illness underpinned by the best available research evidence'.
The guideline has been developed by a multidisciplinary group of heath professionals, along with an ME/CFS charity representative (Dr. Jill Moss from AYME) and a head teacher.
Last September The MEA was asked to comment on a final draft of the guideline. However, it was clearly pointed out by the RCPCH that key recommendations contained in the draft which has been based on either an appraisal of published research evidence or (more often) represented the consensus of a broad group of stakeholders who had also been asked to comment could not be changed at this point, even if The MEA expressed strong objections.
The MEA responded in October by stating that although we felt there was a great deal of useful information in the guideline, we would be unable to endorse the overall content because of fundamental flaws in the way it dealt with the key issues of psychological factors in causation and the use of behavioural interventions (ie cognitive behaviour therapy/CBT and graded exercise therapy/GET) in management. In particular, we strongly disagreed with the way in which some parts of the guideline over-emphasised the importance of psychological factors in causation, along with what we felt were unbalanced recommendations regarding the use of CBT and GET the latter conclusions being largely based on extrapolating the results of research studies carried out in adults rather than children. Neither was there any real attempt to discuss the genuine criticisms that had been made about the trials involving CBT and GET.
We therefore argued that the RCPCH should, instead, adopt the trident approach used in the Chief Medical Officer's report whereby the evidence of patients and clinicians was given roughtly equal weight to the findings of a small number of randomised clinical trials involving CBT and GET an approach we felt was vital given the fact that there are disastrous instances where children have seriously relapsed as a result of inappropriate psychiatric interventions or over-enthusiastic activity programmes.
The MEA also expressed concern about some of the recommendations relating to the use of drugs in children with ME/CFS and the almost complete lack of information and guidance on practical management of this illness by health professionals working in primary care (ie general practice).
In addition, we made a number of constructive suggestions aimed at improving the section on management and then went on to provide the RCPCH with information and references to treatment trials of which they had been unaware.
We are disappointed to say that having reviewed the final version of the guideline, our position remains the same. There is still without doubt a great deal of useful information, especially in relation to recognition of ME/CFS in childhood, recommendations on how children with a possible diagnosis of ME/CFS should be clinically assessed, and how educational issues should be dealt with.
We are also pleased to note that some of the very unhelpful comments about pychological factors have been removed or altered as a result of our comments. But we still cannot give our overall endorsement to the guideline because of the failure by the RCPCH to make any significant changes to the unbalanced opinions and recommendations contained in the section on behavioural interventions.
* The guideline was officially launched at the House of Lords on February 3. This was followed by publicity in the press, TV and medical publications.
* A paper copy of the guideline has been sent to every paediatrician in the country.
* The RCPCH website http://www.rcpch.ac.uk/publications/recent_publications/Latest%20news/CFS.pdf has a copy of the guideline, along with an accompanying patient leaflet, available to download
Click on the ME Links page to find link to ME Association website , to read our lengthy, October 2004 response to the consultative document,