Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer, Rowe et al, 2017

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. Stewart, Rosamund Vallings 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.

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2017 article, but I couldn't see this already listed. Please delete if inadvertently duplicated.

 

Thanks for posting this, @SNT Gatchaman.

We don't have a dedicated thread on it here because it was published just before S4ME was started and presumably people felt it had already been discussed on PR and other places.
https://forums.phoenixrising.me/threads/pediatric-primer.52307/

It has been mentioned quite a few times here:
https://www.s4me.info/search/10316275/?q=Paediatric+Primer&o=date

One of those threads links this article critical of some aspects of the Paediatric Primer which I think it worth reading:
http://occupyme.net/2017/07/21/pediatric-primer-not-for-prime-time/

The article is generally positive about the primer, but also raises important issues

Issues raised include (in my words):
- the description of the sick child as a problem for their doctors and parents, rather than describing the disease as the problem;
- the suggestion that ME tends to improve over time for children, which can leave those whose health doesn't improve feeling like failures, and parents of the child being blamed;
- the suggestion that education leads to improved health, which is unevidenced, and can lead to pressure to keep going with education when a child is too sick;
- interchangable use of multiple terms for PEM, which is likely to cause confusion
- serious problems over diagnostic criteria, with the authors inventing their own criteria and too much focus on Fukuda criteria.

That critique was written shortly after publication in 2017. I don't know whether the primer has been amended.

 

Thanks @Trish. I shared these concerns when reading it. As the large Omicron waves are impacting children in many countries, the guidance for the expected LC / ME cases needs updating to current standards (or better than current standards ideally).