Myalgic Encephalomyelitis/CFS

In this episode Dr Cathy Stephenson and Rose Silvester discuss the impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on young people.

ME/CFS is a poorly understood, yet relatively common medical condition, that can profoundly affect the lives of those who suffer from it. Sadly for decades myths have persisted around the aetiology and pathophysiology of ME/CFS, with many health providers historically even doubting its existence, and confusion still reigns when it comes to an evidence-based approach to management. So here to unpick some of the myths, and help us with an approach to assessing and supporting young people who develop ME/CFS are Dr Cathy Stephenson, a GP who has developed a special interest in the condition, and Rose Silvester, a mum of two teenage boys who are affected by it. We are also delighted to have special guest to give us insight.

Topics

what is ME/CFS and how many people are affected?
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Myths and mistrust surrounding ME/CFS
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what symptoms should I be looking out for when considering ME/CFS?
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The Symptom of Post-Exertional Malaise
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recommended investigations
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Is there a diagnostic tool?
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Noah has ME/CFS
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Noah's mum Rose
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Management
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Take-home messages
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Take home messages

Consider ME/CFS – it is commoner than you think.
The most important symptom to ascertain is Post Exertional malaise – it is unique to ME/CFS
Although bloods and other tests are usually normal, it is important to do them to make sure you don’t miss an alternative or co-existing treatable condition
Support is available – ME Awareness, local support groups
Lastly, don’t underestimate how impacting ME/CFS is

Resources

ME Awareness NZ
Solve M.E. ME/CFS resources for Patients/Caregivers/Medical Providers

Presenter

Cathy Stephenson

General Practitioner & Senior Clinical Lecturer

Dr Cathy Stephenson, MBChB, MRCGP, Diploma of Child Health, Diploma of Obstetrics and Gynaecology, FRNZCGP

Is a part-time GP at Mauri Ora, Victoria University of Wellington and a busy mum of three teenage children. Passionate about health education, her special areas of interest include youth health, sexual and reproductive health, mental health and well-being, gender-affirming healthcare and improving health inequities for vulnerable communities.

For many years, Cathy had a weekly health and well-being column in Stuff, and now authors a column on Youth Health for New Zealand Doctor. More recently Cathy has started working at RNZCGP as Clinical Lead on the GPEP program.

Her interest in ME/CFS has come from a desire to provide better care and support for her patients, many of whom were having to educate her about the latest evidence-based approach to ME/CFS. She is hugely grateful to the team at ME Awareness for co-authoring an article on this topic with her, and providing her with best-practice guidance.

Presenter

Rose Silvester

Clinical Psychologist

Rose Silvester lives with close family members who have ME. This has necessitated long periods of time away from her career as a Clinical Psychologist in order to be their full time carer. To fill the gap that work left, Rose has become involved in ME education and advocacy and has joined with Cathy on several projects to offer support to GP’s and other health professionals to understand more about this common and severely debilitating condition. Rose has also initiated a support and information network for carers of young people with ME/CFS and related conditions.