MEA Website Survey: Physiotherapy and ME | 02 July 2019


Physios For ME

By Karen Leslie, Natalie Hilliard, Michelle Bull, and Nicola Clague-Baker.

We are a group of physiotherapists from across the UK with a special interest in M.E. It is our opinion that the physiotherapy treatment for people with M.E. could be significantly improved.

The principle aims of physiotherapy treatment are to restore movement and function, to improve quality of life and to prevent deterioration.

Physiotherapists use a wide range of treatment approaches, from joint and soft tissue massage/mobilisations, stretches, breathing techniques, passive and active movements, progressive strengthening exercises, balance and gait re-education, pain management approaches, hydrotherapy and much more (see www.nhs.uk/conditions/physiotherapy for further information).

Physiotherapists want to achieve the best for each patient. However, we are aware that some physiotherapy approaches are not helping people with M.E, and in some worrying cases it is making them worse. We believe we know why this is happening:

  • M.E. is not taught in great depth in physiotherapy degree programmes.
  • Guidance for treatment comes from the NICE ME/CFS Guideline (2007) that recommended, among other treatments, Graded Exercise Therapy (GET).

We believe that Physiotherapists are using the NICE Guideline and providing GET but there appears to be a lack of knowledge that GET is inappropriate in some cases (e.g. for those with severe ME).

We now understand that there also appears to be a lack of review of treatment. We know that in the recent Forward-ME survey, almost 80% of respondents reported their symptoms were made worse by GET.

A growing number of physiotherapists are aware of the possible harm of GET, and the importance of tailoring appropriate treatments to the individual, but we feel this awareness is not widespread within our profession.

Our Mission

Our mission is to help educate physiotherapists about M.E. We are working with Dr Nina Muirhead, Dr Charles Shepherd and other members of the CMRC Medical Education Group in pursuit of this goal.

We want to raise awareness in qualified therapists of the issues surrounding current treatment guidelines, and we want to change student university courses to include appropriate biomedical information about M.E.

We also want to explore other management options for people with M.E. The physiotherapy profession has many skills to offer that could benefit patients and help to maximise their potential. It is our aim to start conversations with our colleagues and stimulate new ideas and research.

Our first step is to highlight the current impression that people with M.E have of physiotherapy. We therefore ask you to help us by answering the simple question in this survey, and by emailing your own story.

Website Survey Feedback

We want to hear how physiotherapy has impacted you from a positive and negative perspective. If negative, please give details so we can learn from this. If positive, please outline specifically what made the experience beneficial, so that we can identify and expand on the approaches that do work.

You can contact us directly at physiotherapyforme@gmail.com (please let us know the severity of your M.E. in your response and also if your symptoms increased or decreased after physiotherapy, whether it was GET or another approach/intervention).

The MEA survey can be found on the homepage of the website – about halfway down the page.

Image credits: 123RF/WavebreakMediaLtd/ KatarzynaBiałasiewicz

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