Learn about ME

In this fifth episode of our Learn About M.E. podcast series, we explore the understanding and adjustments needed in Social Care and Social Work service to enable people with M.E. to access and benefit from services. We hear from Clare Ogden, Services Manager at Action for M.E., Zoe McIntyre, a professional in social care who also has Fibromyalgia and Rhona Barton, who has recovered from severe M.E. and who has volunteered as a Peer Mentor supporting people with M.E.
The podcast illustrates some of the barriers and challenges for people with M.E. that are useful to keep in mind while working to support someone with M.E. This episode highlights the adjustments that are useful to enable someone with M.E. to engage with services and create appropriate care plans. Zoe raises important considerations around safety and how the unique nature of M.E. requires a different, more flexible approach to avoid harm.

In this fourth episode of our Learn About ME podcast series, we hear from medical students about their experience of learning about ME/CFS at their medical schools. We also hear about their own research into medical students and practising GPs knowledge and understanding of ME/CFS and its impact on patient’s quality of life. The students talk about how medical education such as the Learn about ME CPD module and this podcast series can support GPs and students to be more confident in identifying ME/CFS and managing the symptoms of the illness.

We also hear how timely and appropriate support can enable people to gain better understanding of how they can better self manage their symptoms and their impact to increase their ability to come to terms with the illness and help themselves move forward. This episode highlights how important it is to acknowledge there is a gap in understanding about this illness and how important it is to just engage and accept people’s experience of living with ME/CFS rather than dismiss it.

In this, the eleventh episode in our Learn About ME podcast series, we discuss how Occupational Therapy can support people living with Long Covid and M.E. Our guests are Katie Davies, Occupational Therapy Team Lead in NHS Grampian; and Corinne, a patient with Long Covid.

To avoid potential harms by energy management being wrongly applied, the 2021 NICE guideline for ME/CFS recommends that, “in specific circumstances, people with ME/CFS should be referred to a physiotherapist or Therapist (OT) in an ME/CFS specialist team.”

OTs can uncover the relationship between the challenges people face, their environment and the daily activities they need and want to carry out.

The podcast highlights the importance of taking a person-centred approach and being flexible from the beginning, with practical tips based on experience.

Corrine talks about the difference occupational therapy made to her, including supporting with pacing, while Katie highlights the need for OTs to understand post exertional malaise (PEM) and how it impacts in ME/CFS and Long Covid, triggered by the smallest amount of activity (physical, cognitive, emotional).

Any healthcare professional can learn more about ME/CFS and the vital adjustments the people may need in consultations and support services by taking Dr Nina Muirhead’s free 60-minute Learna CPD module.

In this seventh episode of our Learn About M.E. podcast series, M.E. Specialist Physiotherapists, Gina and Melanie discuss what Physiotherapists need to consider when working with someone with M.E. They share that anyone providing care needs to be fully aware of the condition and the latest guidance on ME/CFS (NICE Guideline Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [NG206]). Gina and Melanie both completed the free online CPD module on ME/CFS. They found it useful as each question has further information that can deepen understanding of the condition. It was also an easy way to get access to current knowledge of M.E. and to find information, resources and an evidence base.

This podcast highlights that being person-centred and led by the person is even more important with this group of people as they can all present very differently and have completely different personal circumstances. The person is always the expert and physiotherapy can work alongside them. Melanie and Gina both thought this led to an emphasis on listening to each person as support really needs to be personalised to each individual and this may take time to get it right. This may mean being more open and flexible to different approaches than you would normally use as a Physiotherapist. Due to the fluctuations and unpredictability in the condition there may be a need to accept that things may not work and so you need to be able to adapt around the person and their M.E.

Physiotherapists can offer clarification and reassurance to help the person work with their M.E. and identify their own baseline and how they can work with this and not doubt themselves or their condition. They can also extend this support to the important people in the person’s life who may be able to offer insights when the person doesn’t have the energy to engage. These important family and supporters can aid a person to manage their daily activities and priorities more effectively.

In this sixth episode of our Learn About M.E. podcast series, we hear from a Clinical Nurse Specialist in M.E., Keith Anderson, about the vital support that nurses can provide to people with M.E. Keith is joined by a retired Nurse, Midwife, Health Visitor and Clinical Practice Teacher and Carer, Pamela Binny, who offers insight into some of the knowledge on M.E. she wished that she had while she was practising as a Nurse. She is able to describe, first hand, the devastating impact of M.E. not just on the person living with it but the family supporting the person.

We hear how Nurses can very quickly update their professional knowledge by accessing a free CPD module on ME/CFS and listening to this podcast. The module takes under an hour to complete and offers 1 CPD point. The revised guidance on M.E./CFS contained in the new NICE guideline is also highlighted as a useful tool for Nurses. It is suggested that rest and pacing are much better approaches to managing the symptoms of M.E./CFS rather than Graded exercise therapy (GET) or Cognitive behavioural therapy (CBT). The guests discuss how much of the learning can also be applied to nursing people with Long Covid as the clinical presentation can be the same or very similar.