On 2014 Mar 26, Tom Kindlon commented:

Various responses to this paper have been posted here: http://bmjopen.bmj.com/content/4/2/e003973/reply including two by me: (i) "High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys" http://bmjopen.bmj.com/content/4/2/e003973/reply#bmjopen_el_7699 and (ii) "Re:Re:High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys" http://bmjopen.bmj.com/content/4/2/e003973/reply#bmjopen_el_7774

On 2014 Feb 11, Ellen M Goudsmit commented:

Brurberg et al's analysis of the various criteria for ME/CFS is timely and important[1]. However, the information about the 'London' criteria (LC) for classic ME is misleading and they missed the more recent, updated case definition [2]. The LC devised by Dowsett et al were not published in the Westcare Taskforce Report. The latter reproduced a rewritten version by an unknown person which missed the last part of the paper. To my knowledge, that version was never used. In contrast, the LC were used in at least four studies, sometimes alongside the Oxford criteria. I know that as I was the Chair of the Research Working Group at AFME at the time and involved in the funding of studies. We had few conditions but one was the use of the LC. Consequently, AFME was probably the only organisations to continue to study classic ME after the introduction of the CDC and Oxford criteria when attention had been diverted to CFS. Some of the published papers refer to the LC in the text and references; others to criteria developed by AFME, or wrongly, to the TaskForce report. With only one exception, all the studies using the LC selected a homogeneous group with abnormalities in 100% of those tested. Of these, Paul et al (1999) revealed that it was possible to objectively measure the cardinal symptom of classic ME (LC: criterion 1). This information is included in the revised guidelines published in 2009 [2].

Until two years ago, journals had little interest in classic ME, that is, the illness described by physicians since the 1950s. Journals rejected revised guidelines, not because they were poor but because the whole area of criteria was deemed too ‘contentious’. This undermined the scientific process as those reviewing other criteria were not aware of knowledge obtained by colleagues. The new case definition for classic ME was eventually accepted by the Health Psychology Update (British Psychological Society), but the update is only available online [3].

It may well be that there is no difference between samples selected using the CDC, and the newer criteria for ME/CFS and classic ME. However, assumptions require testing which is why scientists still require sound case definitions for ME. They remain an important resource for doctors and researchers wishing to increase diagnostic precision. Conversely, editorial policies that reject proposed criteria for political reasons are unhelpful and will only result in incomplete assessments and analyses.

1. BMJ Open 2014 4:e003973; doi:10.1136/bmjopen-2013-003973

2. Goudsmit EM, Shepherd C., Dancey CP, Howes S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009;18(1):26-33. http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx Updated by EMG in 2012 and available from: http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical entity-10-12.html

3. Howes S, Goudsmit E, Shepherd C. Myalgic encephalomyelitis (ME). Criteria and clinical guidelines 2014. Available from: http://www.axfordsabode.org.uk/me/mecrit2014.htm

On 2014 Feb 11, Ellen M Goudsmit commented:

Brurberg et al's analysis of the various criteria for ME/CFS is timely and important[1]. However, the information about the 'London' criteria (LC) for classic ME is misleading and they missed the more recent, updated case definition [2]. The LC devised by Dowsett et al were not published in the Westcare Taskforce Report. The latter reproduced a rewritten version by an unknown person which missed the last part of the paper. To my knowledge, that version was never used. In contrast, the LC were used in at least four studies, sometimes alongside the Oxford criteria. I know that as I was the Chair of the Research Working Group at AFME at the time and involved in the funding of studies. We had few conditions but one was the use of the LC. Consequently, AFME was probably the only organisations to continue to study classic ME after the introduction of the CDC and Oxford criteria when attention had been diverted to CFS. Some of the published papers refer to the LC in the text and references; others to criteria developed by AFME, or wrongly, to the TaskForce report. With only one exception, all the studies using the LC selected a homogeneous group with abnormalities in 100% of those tested. Of these, Paul et al (1999) revealed that it was possible to objectively measure the cardinal symptom of classic ME (LC: criterion 1). This information is included in the revised guidelines published in 2009 [2].

Until two years ago, journals had little interest in classic ME, that is, the illness described by physicians since the 1950s. Journals rejected revised guidelines, not because they were poor but because the whole area of criteria was deemed too ‘contentious’. This undermined the scientific process as those reviewing other criteria were not aware of knowledge obtained by colleagues. The new case definition for classic ME was eventually accepted by the Health Psychology Update (British Psychological Society), but the update is only available online [3].

It may well be that there is no difference between samples selected using the CDC, and the newer criteria for ME/CFS and classic ME. However, assumptions require testing which is why scientists still require sound case definitions for ME. They remain an important resource for doctors and researchers wishing to increase diagnostic precision. Conversely, editorial policies that reject proposed criteria for political reasons are unhelpful and will only result in incomplete assessments and analyses.

1. BMJ Open 2014 4:e003973; doi:10.1136/bmjopen-2013-003973

2. Goudsmit EM, Shepherd C., Dancey CP, Howes S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009;18(1):26-33. http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx Updated by EMG in 2012 and available from: http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical entity-10-12.html

3. Howes S, Goudsmit E, Shepherd C. Myalgic encephalomyelitis (ME). Criteria and clinical guidelines 2014. Available from: http://www.axfordsabode.org.uk/me/mecrit2014.htm

On 2014 Mar 26, Tom Kindlon commented:

Various responses to this paper have been posted here: http://bmjopen.bmj.com/content/4/2/e003973/reply including two by me: (i) "High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys" http://bmjopen.bmj.com/content/4/2/e003973/reply#bmjopen_el_7699 and (ii) "Re:Re:High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys" http://bmjopen.bmj.com/content/4/2/e003973/reply#bmjopen_el_7774