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The quality of life of children with ME/CFS

Discussion in 'Latest ME/CFS Research' started by shrewsbury, May 19, 2010.

  1. shrewsbury

    shrewsbury member

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    Physical and Functional Impact of CFS/ME in childhood

    Merge to CO-CURE May 17

    [sb: I believe this is the research Dr Donnica referred to in the NEwsMaker interview with her and Annette Whittemore May 18 2010. Her opinion, I believe, was that, while this is a small study, it is important to be getting research out that shows the reduced quality of life.]

    The scientific report entitled "Physical and Functional Impact of CFS/ME in childhood" received early-release publication on May 17th in the eFirst pages of the US journal PEDIATRICS http://pediatrics.aappublications.org/papbyrecent.dtl, the official journal of the American Academy of Pediatrics.

    We are delighted to see these important results finally in print, and a summary of the findings can be read below.

    Dr Neil Abbot, ME Research UK http://www.meresearch.org.uk/
    Jane Colby, The Young ME Sufferers (Tymes) Trust http://www.tymestrust.org
    Robert Sclater, Search ME http://www.search-me.org.uk/index.html

    ABSTRACT
    Objective. The aim of this study was to compare self-reported and parent- or guardian-reported quality of life in a group of paediatric CFS/ME patients with age- and sex-matched healthy control children to determine the extent of functional and physical impairment.

    Methods. The Child Health Questionnaire (CHQ-CH87) was completed by 25 children with CFS/ME, recruited from throughout the UK, and also by 23 age-, sex-, and Tanner scale-matched control children, while parents or guardians of the children completed the Parent Form 50. In addition, patients were asked questions about the background to their illness, i.e. precipitating factors, the status of their illness (improving, static or worsening), and school attendance.

    Results. The mean illness duration of patients was 3.7 years. Sixty-eight percent of the children said that their illness developed quickly; in 88% illness had had an infectious onset. Only one child (4%) attended school full time, while 12 (48%) went to school part time, and 8 (32%) had home tuition only. Children with CFS/ME scored significantly scored lower in 10/14 CHQ concepts; lowest scores were shown for "global health" (21.4 versus 84.1 in patients and controls, respectively; P<0.0001) and "role/social limitations due to physical health" (24.9 versus 100; P<0.0001). Other concepts significantly lower in CFS/ME patients included self esteem, metal health, and increased bodily pain and discomfort. Quality of life in the children with CFS/ME compared unfavorably with previously published results for pediatric type 1 diabetes and asthma patients. There was a close correspondence between the illness perceptions of the children and their parents.

    Conclusions. The quality of life of children with CFS/ME was profoundly reduced when compared to their healthy counterparts.

    OVERVIEW
    In Western societies, ME/CFS is thought to affect 50 to 70 children per 100,000. It is thought that most eventually improve in health, but some remain ill or find their health worsens over time. A report to the Chief Medical Officer of England http://www.dh.gov.uk/en/Publication...ions/PublicationsPolicyAndGuidance/DH_4064840 concluded that ME/CFS represents "a substantial problem in the young", while the Royal College of Paediatrics and Child Health http://www.rcpch.ac.uk/Research/ce/RCPCH-guidelines has produced evidence-based guidelines on how to diagnose and manage the illness in children.

    Dr Gwen Kennedy and her colleagues in the Vascular and Inflammatory Diseases Research Unit http://www.dundee.ac.uk/medther/, in the University of Dundee, have recently completed one of the first ever biomedical research projects in children with ME/CFS. Her work was funded by several organisations (further details below) including ME Research UK; The Young ME Sufferers (Tymes) Trust http://www.tymestrust.org; and Search ME http://www.search-me.org.uk/index.html.

    Dr Kennedy's group has previously reported a whole raft of abnormalities in adults with ME/CFS, mainly involving the immune and cardiovascular systems. These findings have included an increase in the programmed death (apoptosis) of white blood cells, raised levels of oxidative stress which can damage blood vessels and other organs, increased markers of inflammation, and abnormalities in blood vessel function. All of these are potentially associated with a future risk for cardiovascular problems such as heart disease and stroke.

    These studies have all been in adults with ME/CFS, but for her latest work Dr Kennedy decided to focus on children with the disease. One aspect was to investigate whether the abnormalities found in adult patients are also present in children with ME/CFS. But another was to investigate objectively the quality of life of children with ME/CFS, and these results have just been published in the US journal, Pediatrics, the official peer-reviewed journal of the American Academy of Pediatrics.

    Twenty-five children with ME/CFS and 23 healthy children were recruited from throughout the UK. All were between the ages of 10 and 18 years, and the healthy children were matched to the patients for age, gender and stage of puberty. This meant that a comparison between the two groups was as valid as possible.

    The initial diagnosis of ME/CFS had been made by the children's local consultant paediatrician or general practitioner according to a revised version of the CDC-1994 case definition, but it was also confirmed by the researchers from a clinical examination. Each child was asked to complete the Child Form of the Child Health Questionnaire, while their parents were asked to complete the Parent Form. This questionnaire collects information on a number of different areas related to the quality of life of an individual. These include their physical abilities, their social limitations, how they perceive their general health, whether they experience any pain or discomfort, and how they are able to interact with their family. The questionnaire also covers emotional and mental health, including self-esteem, behaviour and their effect on the parents. The responses were converted into scores for each area, which were then summed to produce a total score out of 100, with higher scores indicating a better health status. The children were asked about their situation when they became unwell, factors which may have contributed to the illness, and whether they thought they were currently improving, worsening or unchanged. They were also asked what impact the CDC-1994 minor criteria symptoms (short term memory loss, sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, un-refreshing sleep and post exertional malaise) had on their lives.

    The main finding of the study was that children with ME/CFS scored significantly lower than the healthy children in 10 out of 14 areas covered by the Child Health Questionnaire. They had particularly low scores for global health (21.4 compared with 84.1 in the healthy children) and for social limitations due to physical health (24.9 compared with 100). Self-esteem, mental health, body pain and discomfort, and the effect of the child's health on family activities were also significantly worse for children with ME/CFS. However, there were no differences between children with ME/CFS and healthy children in how well the family got along, or in the children's perception of their own behaviour.

    It is important to note that the quality of life reported by these children with ME/CFS was not only worse than that of healthy children of a similar age, but also worse than that of children with type 1 diabetes or those with asthma (as reported in previous studies). Furthermore, the physical symptoms of ME/CFS can be at least as disabling as those of multiple sclerosis and other chronic conditions.

    Importantly, the illness had started with an infection in 88% of the children, while only one child (out of 25) was able to attend school full-time. Fortunately, just over half of the children who participated felt that their symptoms were improving, and the prognosis for children with ME/CFS is generally better than for adults, although no long-term studies have been conducted. However, Dr Kennedy's findings confirm that ME/CFS does have a serious impact on children's quality of life, and she comments: "This experience of illness occurs at a particularly vulnerable time of life when disruption to education and family has the severest consequences... it is important that the condition be recognised and diagnosed so that the consequences on quality of life can be attenuated."

    CO-FUNDERS OF THE STUDY
    ME Research UK funds biomedical research into ME/CFS with the aim of finding the cause of the illness and developing effective treatments. It funds the work of a growing number of scientists in the UK and worldwide, and to date has invested over 600,000 to support biomedical research. The charity is particularly grateful to the ME organisations which have provided larger donations to help us fund specific projects, details of which including some of the resulting scientific papers can be found at its research pages http://www.meresearch.org.uk/research/projects/completed.html

    The Young ME Sufferers (Tymes) Trust, one of the major cofunders of the study at the University of Dundee, is the longest established national UK service for children and young people with ME and their families. A well-respected national charity, its entire professional team give their time free of charge. It runs an Advice Line, provides access to ME experts for doctors, teachers and social workers and produces a magazine for children, families and professionals. The Trust played a major role in producing the children's section of the Department of Health Report on CFS/ME (2002). It promotes interactive virtual education for children with ME, and provides the Tymes Trustcard - a pass card for children in school, endorsed by the Association of School and College Leaders. More information on the Tymes Trust and its work can be obtained at its website http://www.tymestrust.org

    Search ME, based in Rosyth Fife, was founded in 2002. Its aims are to improve the lives of people with ME and to provide them with a voice on the Cross Party Group for ME in the Scottish Parliament. The charity has raised the bulk of its donations through organising Rock and Pop Concerts. Search ME became an early supporter of the study at the University of Dundee and helped fund the work carried out there. Members of the charity are very proud of the work carried out at Dundee and of all the people involved. Further information can be found on the website www.search-me.org.uk

    Tenovus Scotland has funded world class cancer research across the UK for over 40 years providing a vital link by funding pilot studies which can attract further support from major funding bodies such as The Wellcome Trust, The MRC, Cancer Research UK, British Heart Foundation and many others. Further information can be found at its website http://www.tenovus-scotland.org.uk/
     
  2. Dolphin

    Dolphin Senior Member

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    This was done as an off-shoot of a biomedical study that should be published on the same patients in the next few months.
     
  3. Mithriel

    Mithriel Senior Member

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    Scotland
    ME Research UK do very good work and need our financial support.

    Mithriel
     
  4. muffin

    muffin Senior Member

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    USA!
    The quality of life of children with ME/CFS
    A two-page pdf version of this article from our Spring 2010 Breakthrough magazine can be downloaded here (pdf 125 KB)

    Authors
    Dr Gwen Kennedy, Dr Christine Underwood, Prof. Jill Belch

    Institution
    Vascular and Inflammatory Diseases Research Unit, Centre for Cardiovascular and Lung Biology, Division of Medical Sciences, Ninewells Hospital and Medical School, Dundee, UK

    Objective
    The aim of this study was to compare self-reported and parent- or guardian-reported quality of life in a group of paediatric CFS/ME patients with age- and sex-matched healthy control children to determine the extent of functional and physical impairment.

    Methods
    The Child Health Questionnaire (CHQ-CH87) was completed by 25 children with CFS/ME, recruited from throughout the UK, and also by 23 age-, sex-, and Tanner scale-matched control children, while parents or guardians of the children completed the Parent Form 50. In addition, patients were asked questions about the background to their illness, i.e. precipitating factors, the status of their illness (improving, static or worsening), and school attendance.

    Results
    The mean illness duration of patients was 3.7 years. Sixty-eight percent of the children said that their illness developed quickly; in 88% illness had had an infectious onset. Only one child (4%) attended school full time, while 12 (48%) went to school part time, and 8 (32%) had home tuition only. Children with CFS/ME scored significantly scored lower in 10/14 CHQ concepts; lowest scores were shown for global health (21.4 versus 84.1 in patients and controls, respectively; P<0.0001) and role/social limitations due to physical health (24.9 versus 100; P<0.0001). Other concepts significantly lower in CFS/ME patients included self esteem, mental health, and increased bodily pain and discomfort. Quality of life in the children with CFS/ME compared unfavorably with previously published results for pediatric type 1 diabetes and asthma patients. There was a close correspondence between the illness perceptions of the children and their parents.

    Conclusions
    The quality of life of children with CFS/ME was profoundly reduced when compared to their healthy counterparts.

    Publication
    Kennedy G, Underwood C, Belch JJF. Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Pediatrics 2010; 125(6): e13241330.

    Funding acknowledgements
    We thank ME Research UK, Tenovus Scotland, the Young ME Sufferers Trust (Tymes Trust), and Search ME for providing funding for this study. Prof. Belch also receives funding from the Sir John Fisher Foundation, and this help is gratefully acknowledged.

    Comment by ME Research UK
    In Western societies, ME/CFS is thought to affect 50 to 70 children per 100,000. It is thought that most eventually improve in health, but some remain ill or even get worse over time. A report to the Chief Medical Officer of England concluded that ME/CFS represents a substantial problem in the young, while the Royal College of Paediatrics and Child Health has produced evidence-based guidelines on how best to diagnose and manage the illness in children.

    Dr Gwen Kennedy and her colleagues in the Vascular and Inflammatory Diseases Research Unit, in the University of Dundee, have been undertaking one of the first ever biomedical research projects in children with ME/CFS, and their first results were published by early-release in May 2010 in the US journal Pediatrics, the official peer-reviewed journal of the American Academy of Pediatrics.

    Dr Kennedys group has previously reported a whole raft of abnormalities in adults with ME/CFS, mainly involving the immune and cardiovascular systems. These findings have included an increase in the programmed death (apoptosis) of white blood cells, raised levels of oxidative stress which can damage blood vessels and other organs, increased markers of inflammation, and abnormalities in blood vessel function. All of these are potentially associated with a future risk for cardiovascular problems such as heart disease and stroke. However, these studies have all been in adults with ME/CFS, but for her latest work Dr Kennedy decided to focus on children with the disease. One aspect was to investigate whether the abnormalities found in adult patients are also present in children with ME/CFS. But another was to investigate objectively the quality of life of children with ME/CFS.

    Twenty-five children with ME/CFS and 23 healthy children were recruited from throughout the UK. All were between the ages of 10 and 18 years, and the healthy children were matched to the patients for age, gender and stage of puberty. This meant that a comparison between the two groups was as valid as possible.

    The initial diagnosis of ME/CFS had been made by the childrens local consultant paediatrician or general practitioner according to a revised version of the CDC-1994 case definition, but it was also confirmed by the researchers from a clinical examination. Each child was asked to complete the Child Form of the Child Health Questionnaire, while their parents were asked to complete the Parent Form. This questionnaire collects information on a number of different areas related to the quality of life of an individual. These include their physical abilities, their social limitations, how they perceive their general health, whether they experience any pain or discomfort, and how they are able to interact with their family. The questionnaire also covers emotional and mental health, including self-esteem, behaviour and their effect on the parents. The responses were converted into scores for each area, which were then summed to produce a total score out of 100, with higher scores indicating a better health status.

    The children were asked about their situation when they became unwell, factors which may have contributed to the illness, and whether they thought they were currently improving, worsening or unchanged. They were also asked what impact the CDC-1994 minor criteria symptoms (short term memory loss, sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, un-refreshing sleep and post exertional malaise) had on their lives.

    The main finding of the study was that children with ME/CFS scored significantly lower than the healthy children in 10 out of 14 areas covered by the Child Health Questionnaire. They had particularly low scores for global health (21.4 compared with 84.1 in the healthy children) and for social limitations due to physical health (24.9 compared with 100). Self-esteem, mental health, body pain and discomfort, and the effect of the childs health on family activities were also significantly worse for children with ME/CFS. However, there were no differences between children with ME/CFS and healthy children in how well the family got along, or in the childrens perception of their own behaviour.
    It is important to note that the quality of life reported by these children with ME/CFS was not only worse than that of healthy children of a similar age, but also worse than that of children with type 1 diabetes or those with asthma (as reported in previous studies). Furthermore, the physical symptoms of ME/CFS can be at least as disabling as those of multiple sclerosis and other chronic conditions.

    Importantly, the illness had started with an infection in 88% of the children, which confirms the known association between initial infection and subsequent development of CFS/ME. In the historical literature, epidemics of an ME-like illness have occurred with substantial morbidity (e.g., Acheson ED. Am J Med 1959) and, for mononucleosis specifically, there is a recognised association between infection and ME/CFS; one casecontrol study (Magnus et al. Vaccine 2009) of Norwegian children reported that having had mononucleosis with clear symptoms increased the risk of CFS/ME 10-fold.
    A significant proportion of children in the study had interrupted schooling, and only 1 of 25 children was able to attend school full-time, a finding which accords with other studies on the interruption of education in children with ME/CFS. Fortunately, just over half of the children who participated felt that their symptoms were improving, and the prognosis for children with ME/CFS is generally thought to be better than for adults, although no long-term studies have been conducted.

    Overall, Dr Kennedys findings confirm that ME/CFS does have a serious impact on childrens quality of life, and she comments: This experience of illness occurs at a particularly vulnerable time of life when disruption to education and family has the severest consequences it is important that the condition be recognised and diagnosed so that the consequences on quality of life can be attenuated.

    Co-funders of the study
    ME Research UK funds biomedical research into ME/CFS with the aim of finding the cause of the illness and developing effective treatments. It funds the work of a growing number of scientists in the UK and worldwide, and to date has invested over 600,000 to support biomedical research. We are particularly grateful to the ME organisations which have provided larger donations to help us fund specific projects, details of which including some of the resulting scientific papers can be found at our research pages.

    The Young ME Sufferers (Tymes) Trust, one of the major cofunders of the study at the University of Dundee, is the longest established national UK service for children and young people with ME and their families. A well-respected national charity, its entire professional team give their time free of charge. It runs an Advice Line, provides access to ME experts for doctors, teachers and social workers, and produces a magazine for children, families and professionals. The Trust played a major role in producing the childrens section of the Department of Health Report on CFS/ME (2002). It promotes interactive virtual education for children with ME, and provides the Tymes Trustcard a pass card for children in school, endorsed by the Association of School and College Leaders. More information on the Tymes Trust and its work can be obtained at its website.

    Search ME, based in Rosyth Fife, was founded in 2002. Its aims are to improve the lives of people with ME and to provide them with a voice on the Cross Party Group for ME in the Scottish Parliament. The charity has raised the bulk of its donations through organising Rock and Pop Concerts. Search ME became an early supporter of the study at the University of Dundee and helped fund the work carried out there. Members of the charity are very proud of the work carried out at Dundee and of all the people involved. Further information can be found on their website.

    Tenovus Scotland has funded world class cancer research across the UK for over 40 years, providing a vital link by funding pilot studies which can attract further support from major funding bodies such as the Wellcome Trust, the MRC, Cancer Research UK, the British Heart Foundation and many others. Further information can be found at its website.
    http://www.meresearch.org.uk/research/projects/childrenqol.html
     
  5. Angela Kennedy

    Angela Kennedy *****

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    Essex, UK
    MERUK's description of the RCPCH guideline as 'evidence-based' is rather untenable. The vast majority of guideline instructions were based on opinion (including the ones about persuading the parents that the medics should be drawing lines under investigations and moving on, and that the parents attitudes to sexuality should be explored). Indeed, there was so little evidence on children with ME/CFS, let alone good quality evidence, at the time and even since, that these guidelines COULDN'T be 'evidence-based' as such.
     
  6. muffin

    muffin Senior Member

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    USA!
    So should I delete this thread? I thought I heard some of you guys saying that the "ME Research UK" group was sort of "out there". But I never see anything on children/young people. Nothing. I guess that really just means that no one is doing any research (except Dr. Bell and Dr. Rowe at Johns Hopkins) on children with CFIDS. That's why I grabbed this article. What about the kids?????

    Delete or keep???
     
  7. Dolphin

    Dolphin Senior Member

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    Looks like the bit was a summary of what the authors wrote:

    (Extract from introduction):
    I agree in general with the point, although I think the description is used by others.
     
  8. Dolphin

    Dolphin Senior Member

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    Dr. Bell has retired so don't see him doing much work with children (except former patients who were children).

    Last paper on children by Rowe in PubMed was 2006. See: "chronic fatigue" rowe http://www.ncbi.nlm.nih.gov/sites/pubmed

    So you are right that not much research being done on children.
     
  9. Mithriel

    Mithriel Senior Member

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    Scotland
    ME Research UK is doing well designed biomedical studies into ME/CFS. I don't think we can reject what they say because if one phrase in the summary. It is possible that they used "evidence based" as an insult :Retro smile:

    Their techniques and outlook are totally biomedical and this research seems valuable.

    Mithriel
     
  10. Min

    Min Senior Member

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    UK
    They do a brilliant job with very little money. All UK government funding goes to the psychiatric profession for them to waste on rubbish like the PACE and FINE trials.
     
  11. taniaaust1

    taniaaust1

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    Sth Australia
    Wow i find that incredible. We all realise that so little funding goes into CFS research but that!! I cant express how i feel about THAT little amount of studies being done on children with CFS. (they are being even more so abandoned then us adults). This is terrible
     
  12. Dolphin

    Dolphin Senior Member

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    I'm not sure what you are picking up on - I'm not saying that there were no studies on children since 2006, just not by Rowe.

    There is the odd bit of questionnaire/"paper" research on children and non-pharmacological interventions (e.g. CBT).

    Unfortunately, there are very few biological studies on children which is shocking to an extent. Although personally I think we need more good quality studies overall i.e. I don't see the research on children as that important per se - just sort out the science and then children like everyone else should be helped.
     

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