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NICE Publish new Guidelines

The National Institute for Health and Care Excellence (NICE) have now published their final update of their guidance “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”.

During the stakeholder consultation process, Physios for ME provided our own detailed commentary on the draft guidelines at the end of 2020. We are pleased to see that the significant changes – removing recommendations for graded exercise therapy – have remained in the finalised guidelines, and further amendments have been made to clarify some areas following the draft consultation.

The over-riding message for physiotherapists is:

“Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”

This description defines graded exercise therapy (“GET”) but is not exclusive to this terminology, so it is important to understand that any treatment approach that uses fixed increments and is based on a deconditioning theory should not be used, regardless of what it may be called.

The guidelines are in line with our own recommendations and reflects the known adverse physiological effects of exertion.

While we are on the whole pleased with the new guidelines, we do have some comments and concerns:

1. Specialist services have historically based practice on the old NICE Guidelines, providing GET and CBT. The new guidelines represent a significant shift in clinical practice and we therefore wonder;

  • Who will provide training to support teams to adapt their practice?

  • How will these changes be overseen and monitored?

2. The new guidelines state: “If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team”.

We find this to be too restrictive. People with ME may see a physiotherapist outside of a specialist ME service for other problems, such as musculoskeletal, pain or rheumatology conditions.

Under these guidelines, how should an MSK practitioner manage a shoulder injury in a person with ME? Or an orthopaedic physiotherapist provide rehabilitation to a person with ME who has just had a hip replacement?

We feel that education for all physiotherapists needs to be improved regarding ME, in particular the ability to identify and manage post exertional malaise, so that all physiotherapy interventions can be adapted and made suitable for a person with ME.

  • We think all undergraduate physiotherapy programmes should include ME as standard.

  • We feel that training updates based on the most recent biomedical evidence base should be made available for all physiotherapists regardless of speciality.

  • We would emphasis the requirements for continuing professional development (CPD) as part of the registration with the Health & Care Professions Council, and that CPD is the responsibility of each individual practitioner

Physios for ME will be centring much of our work on addressing the points above, as well as continuing to explore research into how our profession can offer people with ME even more support that can improve quality of life.

We would like to thank the team at NICE for publishing the guidelines, and all of the stakeholders and supporters for their tireless work. We also extend our respect to the ME patient community who provided their expertise to the consultation process despite the potential consequences for their own symptoms.

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1 Comment

Tracy Meggitt
Tracy Meggitt
Oct 29, 2021

It's very disheartening to see the Royal Colleges continuing to fight against the guidelines. I wish someone would very publicy expose them and their ideas for what they really are instead of allowing them to continue trying to ruin our lives. Thank you for continuing the fight on behalf of those of us who are not able.

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