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ME/CFS in Young People: A Primer

Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%

Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents.

The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable to attend school.

Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%.

ME/CFS Diagnosis and Management in Young People: A Primer | 20 June 2017
Published by, frontiers in pediatrics | neuropediatrics, 19 June, 2017.

Open Access

Review Article
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart8, Rosamund Vallings9 and Katherine S. Rowe

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis.

This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina.

Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems.

While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%.

Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common.

Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms.

The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.

The full review can be accessed here.

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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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4 Comments

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  1. It’s a great step forward but seriously missing the fact that continuous heart rate monitoring can be used to assist the children in monitoring their rest/activity levels. It also misses the fact that adequate rest, as per heart rate indicated requirements will alleviate symptoms and is a precursor to getting well. Symptom reduction is a step forward BUT feeling well is not the same as being well. Doing too much when feeling well leads to the push crash cycle- again this is where physiology can assist the child.

    • Yes there evidently are areas which need strengthening, tho it is a good step in the right direction. I think one of the strengths of this primer is that it is a timely formal response or an alternative narrative to the targeting of children by the psych mob, despite some apparent weaknesses.

  2. Does this have the backing of Tymes Trust?
    They are the best advocates for ME in young people

    • Hi Jan, I agree Tymes Trust is a trusted advocate for children. I can’t find any cross reference between Tymes Trust and the article. Given that Dr Speight is one of the authors, I would think that might be the case.

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