Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Pediatrics: Chronic Fatigue at 16 years >> letters

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Feb 10, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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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
     
    Last edited: Feb 10, 2016
  2. charles shepherd

    charles shepherd 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...
     
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  3. Sasha

    Sasha Fine, thank you

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    UK
    Thank you for writing in about this, @charles shepherd. I'm also glad to see academics writing in with their critiques. James Coyne has pointed out what an over-small world UK academia is and so I'm grateful to US academics critiquing UK work.
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    Astonishing that stuff this fundamental and basic needs to be pointed out.
     
  5. Denise

    Denise Senior Member

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    Thank you to Marvin Medow, Dr. Rowe and Julian Stewart!

    I look forward to reading MEA's letter. Thanks for submitting it @charles shepherd.
     
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  6. Dolphin

    Dolphin Senior Member

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    @Maxwhd on twitter found this:

    https://www.hopkinschildrens.org/up...and_Families/Find_a_Specialist/Rowe-Dec15.pdf
    i.e. Peter Rowe wasn't willing to co-author the paper, despite being involved. A lot of people would just have wanted another paper for their CV.
     
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  7. Denise

    Denise Senior Member

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  8. A.B.

    A.B. Senior Member

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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.
     
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  9. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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  10. medfeb

    medfeb Senior Member

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  11. Helen B 25%

    Helen B 25%

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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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  12. charles shepherd

    charles shepherd Senior Member

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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.
     
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  13. Tom Kindlon

    Tom Kindlon Senior Member

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    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.
     
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  14. Tom Kindlon

    Tom Kindlon Senior Member

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    ---

     
    Last edited: Nov 22, 2016
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  15. medfeb

    medfeb Senior Member

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    Excellent, @Tom Kindlon

    The Medow letter was there in Feb but then disappeared. Good to see it's back.
     

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