- Jul 2018
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europepmc.org europepmc.org
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On 2014 Jan 22, Tom Kindlon commented:
The 49% figure for alternative diagnoses would be higher if every patient had a full assessment
The abstract states "altogether 184 of 377 (49%) patients had alternative diagnoses to CFS [chronic fatigue syndrome]." However, this is an underestimate as not everyone had a full assessment. Looking at the figures, 113 did have a confirmed CFS diagnosis with another 3 people not meeting fatigue criteria for CFS, 2 people recovered from CFS and 1 person with no conclusive diagnosis following assessment. However, this leaves 74 others. If they were ever assessed individually (which may eventually have happened, either at the St Bartholomew's Hospital CFS service or at a service closer to them), some of them presumably would have been found to have had an alternative diagnosis.
The following sentences are interesting: "There were 67 (35%) reasons in referrals that were declined due to likely alternative medical diagnoses. The majority of these were due to chronic pain being the primary problem (32, 16%)." This suggests that the service uses a model akin to the Oxford criteria for CFS[1]: "a syndrome characterized by fatigue as the principal symptom." However other criteria do not use such a requirement, something which is implicitly expressed in a paper which had the same corresponding author as this paper: "The PACE findings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome[3] and myalgic encephalomyelitis [ME] but only if fatigue is their main symptom [2]." Also, the NICE guidelines for "CFS/ME"[4] does not appear to make such a requirement. Indeed, if one looks at the full version of the NICE guidelines, they investigate situations where "the individual's primary symptom is pain".
The ME Association in the UK published in 2010 possibly the largest ever patient survey[5]. Three thousand five hundred and ninety four people responded to a question asking about their most severe symptom (page 6): "Muscle fatigue (1730), Cognitive Dysfunction (548), Pain (esp in muscles & joints) 504, Sleep Problems (461), Mobility Problems (197), None of these apply (18)". Such data suggests that, among those referred to the St Bartholomew's Hospital CFS service who were said to have alternative diagnoses, some might be considered as having "CFS/ME" by other professionals.
References:
[1]. Sharpe MC, Archard LC, Banatvala JE, et al. A report--chronic fatigue syndrome. J Roy Soc Med 1991; 84: 118-21.
[2]. White PD, Goldsmith KA, Johnson AL, et al on behalf of the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377:823-836.
[3]. Reeves WC, Lloyd A, Vernon SD, et al. The international chronic fatigue syndrome study group identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res 2003, 3: 2.
[4]. National Institute for Health and Clinical Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). Diagnosis and management of CFS/ME in adults and children. London: NICE, 2007 http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf Accessed February 3, 2012.
[5]. Managing my M.E. - What people with ME/CFS and their carers want from the UK's health and social services. Gawcott, England: ME Association; May 2010. Available at: http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf Accessed February 3, 2012.
Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid
This comment, imported by Hypothesis from PubMed Commons, is licensed under CC BY.
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- Feb 2018
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europepmc.org europepmc.org
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On 2014 Jan 22, Tom Kindlon commented:
The 49% figure for alternative diagnoses would be higher if every patient had a full assessment
The abstract states "altogether 184 of 377 (49%) patients had alternative diagnoses to CFS [chronic fatigue syndrome]." However, this is an underestimate as not everyone had a full assessment. Looking at the figures, 113 did have a confirmed CFS diagnosis with another 3 people not meeting fatigue criteria for CFS, 2 people recovered from CFS and 1 person with no conclusive diagnosis following assessment. However, this leaves 74 others. If they were ever assessed individually (which may eventually have happened, either at the St Bartholomew's Hospital CFS service or at a service closer to them), some of them presumably would have been found to have had an alternative diagnosis.
The following sentences are interesting: "There were 67 (35%) reasons in referrals that were declined due to likely alternative medical diagnoses. The majority of these were due to chronic pain being the primary problem (32, 16%)." This suggests that the service uses a model akin to the Oxford criteria for CFS[1]: "a syndrome characterized by fatigue as the principal symptom." However other criteria do not use such a requirement, something which is implicitly expressed in a paper which had the same corresponding author as this paper: "The PACE findings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome[3] and myalgic encephalomyelitis [ME] but only if fatigue is their main symptom [2]." Also, the NICE guidelines for "CFS/ME"[4] does not appear to make such a requirement. Indeed, if one looks at the full version of the NICE guidelines, they investigate situations where "the individual's primary symptom is pain".
The ME Association in the UK published in 2010 possibly the largest ever patient survey[5]. Three thousand five hundred and ninety four people responded to a question asking about their most severe symptom (page 6): "Muscle fatigue (1730), Cognitive Dysfunction (548), Pain (esp in muscles & joints) 504, Sleep Problems (461), Mobility Problems (197), None of these apply (18)". Such data suggests that, among those referred to the St Bartholomew's Hospital CFS service who were said to have alternative diagnoses, some might be considered as having "CFS/ME" by other professionals.
References:
[1]. Sharpe MC, Archard LC, Banatvala JE, et al. A report--chronic fatigue syndrome. J Roy Soc Med 1991; 84: 118-21.
[2]. White PD, Goldsmith KA, Johnson AL, et al on behalf of the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377:823-836.
[3]. Reeves WC, Lloyd A, Vernon SD, et al. The international chronic fatigue syndrome study group identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res 2003, 3: 2.
[4]. National Institute for Health and Clinical Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). Diagnosis and management of CFS/ME in adults and children. London: NICE, 2007 http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf Accessed February 3, 2012.
[5]. Managing my M.E. - What people with ME/CFS and their carers want from the UK's health and social services. Gawcott, England: ME Association; May 2010. Available at: http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf Accessed February 3, 2012.
Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid
This comment, imported by Hypothesis from PubMed Commons, is licensed under CC BY.
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