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Myalgic EncephalomyelitisOct 16, 2023

Lead author Karen Leslie takes part in a Q&A about a new book for physiotherapists on ME and CFS

In an exclusive PhysioUpdate Q&A, neurological physiotherapist Karen Leslie tells Ian A McMillan about what drew her into an area of practice that has tended to baffle some practitioners in the past. She reveals that A Physiotherapist's Guide to Understanding and Managing ME/CFS is not her sole publication and that she is currently writing a series of 'dark thrillers'!

Q Tell us a little about your current role as a physiotherapist

A I graduated from the University of Salford in 2011 and specialised in neurological physiotherapy. My clinical role at present is with a private company working with a range of patients with neurological conditions.

I am also a co-founder of Physios for ME, a volunteer group with the aim of educating and advocating for the better management of people with ME (myalgic encephalomyelitis).

Improving patient care provided all the motivation that Leslie and her colleagues needed

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What drew you into the ME field and then into taking a lead role in writing A Physiotherapist's Guide to Understanding and Managing ME/CFS?

I first came across ME/CFS (chronic fatigue syndrome) in clinical practice and presumed my usual toolkit of treatments could apply, just as it does for any neurological condition I work with. I was gobsmacked to find many typical exercise-based approaches could actually make symptoms worse.

I couldn’t understand why our profession wasn’t flagging this, and as I read many stories of negative experiences with physiotherapists, I realised something had to change. Luckily, I found physiotherapists who felt the same – Dr Nicola Clague-Baker, Dr Michelle Bull and Natalie Hilliard – and in 2019 we formed Physios for ME.

We provide information via our website and carry out research, some of which is already published in peer-reviewed journals. The publisher (Jessica Kinsgley) approached us about writing a book and we were thrilled – it was a way to reach a wider audience. I have training and experience in journalism and communications, so this was the sort of project I was excited to take the lead on.

Has this traditionally been a difficult or controversial area of practice, and, if so, why?

Historically ME/CFS was thought to be caused by deconditioning and fear-avoidance, so treatment was based on exercise and psychology. Unfortunately, this approach isn’t effective and can actually make people worse. The research has moved – on as have the guidelines – but, in some areas, this historic viewpoint remains, which can cause opposition to change.

ME/CFS requires a complete abandonment of the expected outcomes of exercise-based interventions, and sometimes this can take time to understand and adopt.

Give us three key messages from the book that will help practitioners

  • Symptoms of ME/CFS occur across multiple systems including neurological, musculoskeletal, cardiovascular, gastrointestinal, immune and endocrine. The key characteristic is post exertional malaise (PEM): the worsening or addition of symptoms after physical, cognitive, sensory and/or emotional exertion. Every aspect of a physiotherapeutic interaction could cause PEM, so we need to know how to identify it, and how to avoid causing it.
  • A physiotherapist can help to manage some ME/CFS symptoms. This could be pain, autonomic dysfunction, or helping with energy management. Technology such as wearable monitors can track how the body responds and could help to identify activities that can be adapted to reduce energy expenditure. There is no easy fix, but a physiotherapist could be instrumental in improving someone’s quality of life.
  • You need to know about ME/CFS even if you don’t work in specialist services. You might work with an ME/CFS patient for another issue, but your management plan will need to be adapted in order to avoid causing PEM. 

Is this your first book? Tell us how you manged to find the time and motivation?

Improving patient care was definitely our motivation. I’m lucky to work part-time, so I would write draft chapters and we’d review them virtually as a group. We also had two team weekends away where we worked almost every hour! This book couldn’t exist without the combined clinical knowledge and experience of the Physios for ME team, and I’ve learned so much from working alongside them.

Oddly enough … this isn’t my first book! I actually write fiction in my spare time and have published several novels (under the name K G Leslie). My current series is a dark thriller, and, to be honest, sometimes it was more relaxing to write that, than trying to analyse the ME evidence-base!

What’s the reaction to the book been like so far?

We’ve had a really positive response so far – from physiotherapists, other medical professions and people with ME. It’s being read worldwide, and we really hope it will make a difference. 

How do you relax away from the workplace?

By writing books of course!

To order a copy of A Physiotherapist's Guide to Understanding and Managing ME/CFS, go to the publisher's website .

Author: Edited by Ian A McMillan
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