‘Nursing Times’ reviews the school absence and ME story, 7 January 2012

January 7, 2012

From ‘NursingTimes.net', 7 January 2012

Chronic fatigue syndrome could affect one in 100 pupils, BBC News reported.

The estimate is based on research that followed nearly 3,000 children at three secondary schools in Bath. It found that 28 pupils missed school due to chronic fatigue syndrome. The Daily Telegraph said that this means the condition could be 10 times more common than previously thought.

This research investigated whether school-based clinics could be used to identify children with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The researchers assessed pupils who missed more than a fifth of school days each term and found that 28, around 1% of the schools’ population, had CFS. Only five of these children had been previously diagnosed. Children detected as having ME by the school clinics tended to be less severely affected than children who had been previously referred to health services.

The research highlights that CFS is a possible cause of unexplained school absence and that symptoms of fatigue should be followed up. While fatigue is a symptom of CFS, it can also be caused by other conditions such as mood disorders (for example depression) or sleep problems. Although the prevalence of CFS in these schoolchildren is higher than previously thought, further research is needed to see if these figures are representative of the whole country, as well as the Bath area.

Where did the story come from?

The study was carried out by researchers from the University of Bristol and the Centre for Child and Adolescent Health, Bristol, and was funded by The Linbury Trust, a charitable trust established by Lord and Lady Sainsbury. The study was published in the peer-reviewed medical journal BMJ Open.

The newspapers covered this research well.

What kind of research was this?

This study assessed the prevalence of CFS in schoolchildren in three schools in Bath. The study was initiated to try to understand reasons for poor school attendance in the Bath area, and to assess the feasibility of running a school-based clinic as a way of identifying children with CFS.

The researchers said that a previous GP survey had produced an estimate that around 0.06% of children aged between 5 and 19 years had CFS. However, they suggested that this could be lower than the actual numbers of children with CFS, as they may not visit their GP for their CFS symptoms or may not have their CFS diagnosed. The researchers also drew upon another survey that suggests that only around 50% of GPs felt comfortable making a diagnosis of CFS in adults.

In this study the researchers looked for cases of diagnosed and undiagnosed CFS in schoolchildren who were often absent from school.

What did the research involve?

A pilot clinical service was set up with the school attendance service in Bath to try to improve school attendance. The service was run in three state secondary schools between 2007 and 2008: a girls-only school and two mixed gender schools. The three schools had 2,855 pupils. The schools’ attendance officers identified children aged 11 to 16 who had been absent for more than 20% of school days during a single six-week term. They excluded children who had only a single episode of illness (for example a two-week-long illness), children who had a known cause of illness, children who had been to hospital or children who were known to be on holiday or to be truanting.

Families of the remaining children were sent a letter inviting them to meet with a paediatrician from the Bath specialist CFS/ME team (EMC) at the Royal National Hospital for Rheumatic Diseases, and a member of staff from their school, to discuss why their child was absent.

The specialists collected various self-completed inventories before the assessments, then at six weeks and at six months after the assessments. The inventories included an assessment of level of fatigue, quality of life (particularly concerning physical function), pain, anxiety and depression. The children who attended the specialist service had a full paediatric assessment including an examination of their medical history and blood tests in order to exclude other causes of fatigue. Diagnosis of CFS was made based on diagnostic criteria from the National Institute for Health and Clinical Excellence (NICE).

The children who were diagnosed with CFS were offered specialist medical care, which followed the NICE guidance on how to diagnose and manage CFS. All children received sleep and activity management, some of the children received cognitive behavioural therapy, and some children received graded exercise therapy. The researchers then looked at school attendance six months after the assessments to examine whether the variety of treatments had affected how often the children were able to attend school.

What were the basic results?

Out of 2,855 children in the three schools, 461 (16.1%) had missed more than 20% of school during at least one six-week term. Of these, 315 children had a known illness or known reason, other than potential CFS, to be off school. Among these 315 children, three had previously identified CFS and were already being seen by the specialist CFS service.

The remaining 146 children who had missed school without an identifiable cause were invited to attend the clinical review, with 112 accepting the invite and attending. Among the children attending, 48 described fatigue as a major cause of their absence and went on to have a further, more detailed assessment. Of the remaining 64 children given assessments, two had already had a diagnosis of CFS by a paediatrician (but not through a CFS specialist service).

Some 41 of the 48 children who reported fatigue attended further follow-up assessment. Of these:

23 were diagnosed with CFS and were offered rehabilitation
14 had fatigue secondary to mood disorder, of whom 11 were referred to local child and adolescent mental health services
five had other medical problems that were thought to be the cause of their fatigue, such as sleep problems, recurrent tonsillitis and migraine
This meant that 28 children had CFS:

23 new cases identified through the research
two cases that had been previously diagnosed by a paediatrician but not a specialist CFS service
three cases already being cared for by the CFS specialist service
The treatment received by each of the 23 children who had been newly identified as having CFS was not described by the researchers. Four of the 23 children did not attend follow-up appointments. Of the remaining 19 children, 12 were attending school full time by six months, of whom six made a full recovery. One child improved and was able to attend school part time. For six children, school attendance had not changed at six months.

How did the researchers interpret the results?

The researchers said that surveillance is particularly important for illnesses such as CFS as parents may not recognise the symptoms and take their child to see a doctor. They said that “school-based clinics are feasible and have the potential to identify children with CFS which may reduce school absence and its harmful consequences”.


This research assessed the number of children that had chronic fatigue syndrome out of nearly 3,000 children attending secondary school and the feasibility of identifying them using a school-based clinic. The researchers identified potential new cases by assessing children who had missed more than a fifth of school days, and whose absence could not be attributed to other medical reasons or other reasons such as truancy.

This study had several strengths, including the fact that the frequently absent children who reported unexplained fatigue were screened for medical and emotional causes of fatigue other than CFS. Another strength was that well-validated procedures were used to look for other conditions. However, there are inherent limitations to this type of study, which mean further follow-up is warranted:

The researchers point out that the research was conducted in one city in southwest England. They say that the prevalence of CFS and reasons for school absences may differ between regions of the UK.
One of the schools was a girls-only school. The researchers say that, in adults, the prevalence of CFS is higher in women than men, and that 17 out of the 23 children who were newly diagnosed with CFS were girls. Given the higher amount of girls entered into the study, it would need to be determined whether the estimated prevalence reflected what is seen in the general population, with equal numbers of boys and girls.

The researchers had said that their primary outcome (the result they were most interested in) was how their intervention affected school attendance after six months. Although the children were treated in accordance with NICE guidelines, and 12 of the 19 children seemed to show improvement in school attendance after this treatment, the treatments that each child received may have differed as details of treatment were not explicitly described in this study.
This study highlights the importance of finding the reasons for unexplained extended absence from school. The research highlights that a proportion of children who miss school because of fatigue may have CFS, but there are also other causes of fatigue.

Crawley EM, Emond AM, Sterne JAC. Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics. BMJ Open, 2011

6 thoughts on “‘Nursing Times’ reviews the school absence and ME story, 7 January 2012”

  1. These things would be more credible if they didn’t include such exaggerated claims.

    Ten times more prevalent than previously thought. Not even just double – ten times greater.

    Once again the psycho-empire is being built ever larger by people using useless/ dangerous management strategies in place of effective treatment – putting a gloss on the possibly positive results, ignoring the harm and the ‘drop-outs’, but without a control group. The results are meaningless although they’re being used to entrench the psycho-school’s fallacious beliefs.

    Give us science – not beliefs.

  2. ME does not cause ‘fatigue’. ME causes neuroimmune exhaustion – and why do these ‘CFS’ studies never mention the feelings of toxic awfulness, the pain etc that often accompany the exhaustion? More bla bla bla conflation of ME and chronic fatigue, I’m afraid.

  3. Until Esther Crawley uses specific neurological ME criteria to select patients for research, she is not adding anything of any value to ME. The patients who dropped out along the way along with those who failed to improve are possibly more likely to actually have ME.

    For any of the children selected who might have ME, using school attendance as a mark of recovery is a very flawed strategy. Children are just too easy to pressure into conforming and what is happening when they are at school? How much are they suffering? Are they well enough to do any school work and retain information? Long term would they not be better off with a break from school and a home tutor.

    ME is a long term fluctuating disease and six months is not long enough to see if there are any meaningful improvements.

  4. Yes, Mayfly, “research” such as this is pretty meaningless to my mind because they’re not using the very excellent International Consensus Criteria – why not?I believe Esther Crawley has said it wouldn’t be “practical”, – why not? I wish someone would challenge her on this to explain why criteria that have been exhaustively researched and agreed upon by many very eminent medical specialists are not deemed acceptable in this country?
    And excuse my ignorance, but why are all paediatric matters apparently dealt with by her; what happened to Dr Nigel Speight? is he retired or did he get the heave-ho?
    And you’re spot on about 6 months not being long enough to definitely talk of recovery in a long-term and sadly all too often chronic neuro-immune condition.

  5. Sasha you are right on both counts about Nigel Speight.
    He came up for retirement and was very keen to stay on, as consultants often do, but he was forced out. Reason given: cutting back on staff.
    He then took his employers to a tribunal for age discrimination but sadly lost his case.
    Nigel is an ME hero and is working more behind the scenes now to help us all.
    Recently: taking part in the Voices from the Shadows film and helping in the construction of the International Consensus Criteria for ME, he is also medical advisor for the 25% group.

  6. Thanks for the info, Mayfly. The treatment of those medics prepared to speak up and out against the establishment view, such as Dr Speight and Prof Hooper, is disgraceful.

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