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Pediatrics: Chronic Fatigue at 16 years >> letters

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Pediatrics: Chronic Fatigue at 16 years - letters

Pediatrics has started to publish correspondence on the paper from the UK, which concluded that the prevalence of ME/CFS in adolescents was almost 2%

The first letter comes from Marvin Meadow, Peter Rowe and Julian Stewart

The MEA has sent in a letter - which is currently in the editorial pipeline

First letter to be published:
http://pediatrics.aappublications.org/content/early/2016/01/22/peds.2015-3434.comments#

Full paper:
http://pediatrics.aappublications.org/content/early/2016/01/22/peds.2015-3434
 
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This is as far as I can go for free…

9 February 2016
RE: Collin SM, Norris T, Nuevo R, et al. Chronic Fatigue Syndrome at Age 16 Years. Pediatrics. 2016; 137(2):e20153434
  • Marvin S. Medow, Professor of Pediatrics and Physiology Department of Pediatrics, New York Medical College, Valhalla, New York
  • Other Contributors:
    • Peter C. Rowe, Professor of Pediatrics
    • Julian M. Stewart, Professor of Pediatrics and Physiology
We have several concerns about the above-referenced study.

While studying 16 year olds, the authors did not properly identify those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (they used “criteria similar to the definition of chronic disabling fatigue in children”), despite Chronic Fatigue Syndrome being part of their title.

They ignored the stated caveat in the case definition which requires that the fatigue “has no other known cause” (ref 6).

Not all with chronic fatigue have Chronic Fatigue Syndrome. ME/CFS comprises a subset of chronically fatigued individuals who fulfill specific diagnostic criteria, employment of which is critically important for the identification and treatment of diseases or conditions that can result in fatigue. An important component of the diagnosis is a physician's history and physical examination to exclude conditions that could explain the fatigue, including hypothyroidism, heart disease, cancer, liver failure, covert drug abuse, medication side effects, gastrointestinal/nutritional, infectious and psychiatric conditions.

The finding of a high threshold for depressive symptoms suggests an over-representation of those with depression, among whom increased Family Adversity might be an expected precursor. Perhaps individuals with chronic fatigue and a high rate of depression, as identified in this study, might have a higher rate of early childhood adversity, but the same cannot be said for those with ME/CFS.

Sampl...
 

Dolphin

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A.B.

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When Crawley tweeted about her study, several patients responded that the study was flawed because it conflated ill-defined fatigue with ME/CFS. Crawley then deleted her account. I wonder if we're going to hear a harassment story from her soon.
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
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I have just discovered this too.
Concerned.
was hoping for an answer to the above question
has anyone taken this up with the journal?
are the authors of the comments aware that the journal is advising 'no comments published'?
I note this is not the same as 'no comments submitted'.
Appalling that the journal didn't actually publish them.
 
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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
----------------------------------------
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.
 

Tom Kindlon

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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
----------------------------------------
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.
Very disappointing that they did not post it. Nearly all of maybe 100 (?) e-letters of mine have been posted over the years. I can't remember the details of the ones that weren't posted except for one in the British Journal of Psychiatry where I posted one e-letter, the authors said I was wrong, and my follow-up reply wasn't posted.

I would encourage you to post it on PubMed Commons on PubMed http://www.ncbi.nlm.nih.gov/pubmed/26810786. A lot of people who read about the paper will see it there.
 

Tom Kindlon

Senior Member
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This is as far as I can go for free…

9 February 2016
RE: Collin SM, Norris T, Nuevo R, et al. Chronic Fatigue Syndrome at Age 16 Years. Pediatrics. 2016; 137(2):e20153434
  • Marvin S. Medow, Professor of Pediatrics and Physiology Department of Pediatrics, New York Medical College, Valhalla, New York
  • Other Contributors:
    • Peter C. Rowe, Professor of Pediatrics
    • Julian M. Stewart, Professor of Pediatrics and Physiology
We have several concerns about the above-referenced study.

While studying 16 year olds, the authors did not properly identify those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (they used “criteria similar to the definition of chronic disabling fatigue in children”), despite Chronic Fatigue Syndrome being part of their title.

They ignored the stated caveat in the case definition which requires that the fatigue “has no other known cause” (ref 6).

Not all with chronic fatigue have Chronic Fatigue Syndrome. ME/CFS comprises a subset of chronically fatigued individuals who fulfill specific diagnostic criteria, employment of which is critically important for the identification and treatment of diseases or conditions that can result in fatigue. An important component of the diagnosis is a physician's history and physical examination to exclude conditions that could explain the fatigue, including hypothyroidism, heart disease, cancer, liver failure, covert drug abuse, medication side effects, gastrointestinal/nutritional, infectious and psychiatric conditions.

The finding of a high threshold for depressive symptoms suggests an over-representation of those with depression, among whom increased Family Adversity might be an expected precursor. Perhaps individuals with chronic fatigue and a high rate of depression, as identified in this study, might have a higher rate of early childhood adversity, but the same cannot be said for those with ME/CFS.

Sampl...

16 November 2016
RE: Collin SM, Norris T, Nuevo R, et al. Chronic Fatigue Syndrome at
Age 16 Years. Pediatrics. 2016; 137(2):e20153434

Marvin S. Medow, Professor of Pediatrics and Physiology Department of
Pediatrics, New York Medical College, Valhalla, New York
Other Contributors:

Peter C. Rowe, Professor of Pediatrics
Julian M. Stewart, Professor of Pediatrics and Physiology

We have several concerns about the above-referenced study. While
studying 16 year olds, the authors did not properly identify those
with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (they
used “criteria similar to the definition of chronic disabling fatigue
in children”), despite Chronic Fatigue Syndrome being part of their
title. They ignored the stated caveat in the case definition which
requires that the fatigue “has no other known cause” (ref 6). Not all
with chronic fatigue have Chronic Fatigue Syndrome. ME/CFS comprises a
subset of chronically fatigued individuals who fulfill specific
diagnostic criteria, employment of which is critically important for
the identification and treatment of diseases or conditions that can
result in fatigue. An important component of the diagnosis is a
physician's history and physical examination to exclude conditions
that could explain the fatigue, including hypothyroidism, heart
disease, cancer, liver failure, covert drug abuse, medication side
effects, gastrointestinal/nutritional, infectious and psychiatric
conditions.

The finding of a high threshold for depressive symptoms suggests an
over-representation of those with depression, among whom increased
Family Adversity might be an expected precursor. Perhaps individuals
with chronic fatigue and a high rate of depression, as identified in
this study, might have a higher rate of early childhood adversity, but
the same cannot be said for those with ME/CFS. Samples from CFS
clinics do not identify childhood trauma (sexual and physical) as a
risk factor for pediatric CFS (Gjone and Wyller, 2009). In suggesting
a high prevalence of Family Adversity, the Collins report may
inappropriately provide support for a primarily behavioral foundation
for ME/CFS.

The authors stated that participants “were not assessed by a
physician, and our classification was not subject to clinical
verification”, and it is possible that parents and children “reported
significant levels of disabling fatigue that was caused by another
disorder.” They did not however state that proper medical evaluation
for this or any chronic condition is essential, particularly for
children or whether follow-up care was recommended.

Not employing accepted criteria when identifying ME/CFS can result in
unintended deleterious consequences, especially in the vulnerable
pediatric population. Inappropriate diagnoses are potentially
dangerous if “obtaining a diagnosis” confers complacence by the
physician and dissuades parents from seeking medical evaluation of
their child’s fatigue. And physicians may discount a diagnosis of
ME/CFS and therefore employ incorrect treatments.

We therefore need to re-state the importance of using established
criteria to identify ME/CFS to allow for the diagnosis, treatment, and
research of the many aspects of this condition. Since the authors did
not use established diagnostic criteria and employed self-evaluations
of ME/CFS, their paper should be titled “Chronic Fatigue but not
Chronic Fatigue Syndrome at Age 16 Years."

Gjone H, Wyller VB. Chronic fatigue in adolescence - autonomic
dysregulation and mental health: An exploratory study. Acta
Paediatrica, International Journal of Paediatrics
2009;98(8):1313-1318.

Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF,
Unger ER, Reeves WC: Early adverse experience and risk for chronic
fatigue syndrome: results from a population-based study. Arch Gen
Psychiatry. 2006 Nov;63(11):1258-66.

Show Less
Conflict of Interest:
None declared.
---

16 November 2016
RE: Collin SM, Norris T, Nuevo R, et al. Chronic Fatigue Syndrome at
Age 16 Years. Pediatrics. 2016; 137(2):e20153434

Esther Crawley, Reader in Child Health University of Bristol
Other Contributors:

Simon M Collin, Research Fellow

We agree with Medow et al that CFS/ME in a clinical setting should be
diagnosed in accordance with established criteria, and we support
their assertion that proper medical evaluation for any chronic
condition is essential. Indeed, we use data from clinical settings
(specialist adult and pediatric CFS/ME services) as the mainstay of
our research into this debilitating illness.

Our ‘CFS at age 16’ study was based on data from a birth cohort. We
believe that cohort studies add to the evidence base because they
avoid the bias inherent in clinical studies, where only those who
access health care are represented. They allow us to explore the
prevalence of CFS using a population sample to provide the
denominator. We used the ALSPAC cohort for our study because we wanted
to investigate, and control for, variables recorded since before the
child’s birth, and because it is broadly representative of the UK
population. A major limitation common to most birth cohort studies is
that ‘cases’ cannot be validated by a proper medical evaluation, as we
stated in our discussion.

We do not share the concerns of Medow et al that the positive
association of family adversity with chronic fatigue might support a
behavioural foundation for CFS/ME. Instead, we believe that our
replicated findings should dispel once and for all the unhelpful
notion that CFS/ME is more likely to occur in middle class families.

We acknowledge in our limitations that we were unable to differentiate
accurately between those with CFS and co-morbid depression and those
with depression and fatigue. Given the high rate of co-morbid
depression in children with CFS/ME, which we believe is due to the
impact of CFS/ME (Bould et al 2013), we were reluctant to exclude all
cases of depression. Instead, we reported the results of a sensitivity
analysis in which adolescents with high levels of depressive symptoms
were excluded.

The number of children in ALSPAC affected by traumatic events was too
small to support analysis of childhood trauma. The ALSPAC family
adversity index is a much broader measure of general socioeconomic
adversity and, given the association that we found, would account for
a larger population attributable fraction of CFS/ME. We did not
investigate whether family adversity was differentially associated
with CFS/ME according to presence/absence of depressive symptoms. This
is something which we plan to investigate using ALSPAC data
measurements at different ages.

We believe that research into this devastating condition should use a
range of techniques to explore its prevalence, incidence and
aetiology. Our prevalence estimates are not inconsistent with other
studies, and we hope that our study serves to highlight that CFS/ME is
a relatively common illness among adolescents. We trust that the Medow
et al would agree with our concluding remarks that “Awareness needs to
be raised to ensure that families of children affected by CFS can
access specialist medical care, and that pediatricians and those
looking after children are trained in the identification and
management of CFS.”

Bould H, Collin SM, Lewis G, Rimes K, Crawley E. Depression in
paediatric chronic fatigue syndrome. Arch Dis Child. 2013
Jun;98(6):425-8.



Show More
Conflict of Interest:
None declared.
 
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