I submitted a letter to Pediatrics back in January
The letter was received and slightly modified at the request of the editor
The final version below was never published.....
Dr Charles Shepherd
Hon Medical Adviser,MEA
Last reply from Editorial staff:
Thank you for your submission. Below is a copy of your eLetter as we received it. Your eLetter, if accepted, should be viewable within a few days.
Sincerely,
The Editorial staff of Pediatrics
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Article (citation):
Chronic Fatigue Syndrome at Age 16 Years
Simon M. Collin, Tom Norris, Roberto Nuevo, Kate Tilling, Carol Joinson, Jonathan A.C. Sterne, Esther Crawley
Pediatrics Feb 2016, DOI: 10.1542/peds.2015-3434
http://pediatrics.aappublications.org/content/early/2016/01/22/peds.2015-3434
The eLetter was submitted on 29 01 2016:
Publication of the paper by Collin et al on the prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in adolescents (1) led to Britain's best selling newspaper,The Sun, stating: New research reveals that yuppie flu hits one in 50 teenagers (2). Similar 'one in 50' coverage appeared in the international press and the BBC news.
Whilst welcoming the extensive media coverage being given to the problems facing adolescents with ME/CFS in relation to late or non diagnosis, lack of appropriate management, and difficulties relating to education, I have serious concerns about the methodology that was employed to arrive at a prevalence figure of almost 2%.
These concerns are based on the following:
1 Classification of ME/CFS was made on parental and adolescent completed questionnaires where the adolescent was reported to have persisting and disabling fatigue.
2 This self-reported ME/CFS classification was not then validated by a health professional, and there is no information in the paper to indicate whether any of these adolescents did already have a diagnosis of ME/CFS.
3 Even when health professionals in primary care make a provisional diagnosis of ME/CFS, a high level of misdiagnosis is found when the patients are fully re-assessed in a hospital based referral service - approximately 40% of consecutive referrals had another diagnosis in the study by Newton et al (4).
4 There is no indication as to whether following self-reported classification of ME/CFS, the parents were advised to see their GP and whether a diagnosis of ME/CFS was then confirmed.
5 A high proportion of those classified with ME/CFS were also found to have a significant level of depression, which can cause chronic fatigue. When this group was removed, the ME/CFS prevalence figure fell to 0.6%.
6 Sending out questionnaires to over 5,000 parents, the vast majority of whom have normal healthy adolescents, is likely to produce a biased response. Parents of healthy adolescents are less likely to respond whereas parents of children who have an undiagnosed health problem are more likely to be interested in responding.
7 Where the prevalence of adolescent ME/CFS was estimated in a Dutch study (5), using general practice questionnaires and prospective registration of new hospital patients, ME/CFS was found to be far less common (i.e. 0.11%).
With ME/CFS already being reported to be the most common cause of long-term sickness absence from school (5), reliable evidence on the epidemiology is clearly required. But I do question whether this study is just helping to confirm the fact that teenage lifestyles can produce significant levels of tiredness and chronic fatigue - which is not the same as having ME/CFS.
References
1 Collin SM et al. Chronic fatigue syndrome at age 16 years. Pediatrics, 2016, Jan 25. pii: peds.2015-3434. [Epub ahead of print]
2 New research reveals that yuppie flu hits one in 50 teenagers. The Sun, 25 January 2016.
3 Newton JL et al. The Newcastle Chronic Fatigue Syndrome Service: not all fatigue is the same. Journal of the Royal College of Surgeons of Edinburgh, 2010, 40, 304 - 307
4 Sanne L et al. Adolescent chronic fatigue syndrome: Prevalence, Incidence and Morbidity. Pediatrics, 2011, 127, 169 - 175
5 Dowsett EG and Colby J. Long-term sickness absence due to ME/CFS in UK schools: an epidemiological study with medical and educational implications. Journal of Chronic Fatigue Syndrome, 1997, 3, 29 - 42.