In our final episode we discuss severe ME. 

One in four people with Myalgic Encephalomyelitis (ME) are severely or very severely affected.

 Our guests for this episode are Dr Robin Kerr, a GP with over 10 years’ experience in general practice; and patient advocate Helen Brownlie, who campaigns on severe ME through the UK charity which specifically supports people with severe ME, the 25% ME Group.

To represent the voice of people living with severe ME, who are too unwell to speak for themselves, we have readings from international ME and Long Covid writing group, the Pillow Writers. These extracts are read by Laura Anne Collier, an #MEAction Scotland volunteer and Avril McLean, Senior Practitioner at Action for ME.

ME is a complex multi system illness. Its impact can devastate a person’s life. It is a biological condition not psychological as has been wrongly believed by GPs in the past. A useful analogy is that living with ME is like living with a smart phone that only charges to 20% overnight. So, if people use 5% to make breakfast and eat, 5% to wash, 5% to dress, 5% to commute they have used all their energy by 9am and have none left. For someone with severe ME meeting with a GP can use up all their energy for that day, week or month and the impact will show afterwards.

Some of the key points from the discussion are listed below: 

What do GPs need to know about severe ME?

• Approach needs to be flexible so may need adaptation, eg. allow patient to submit questions to GP in advance, have an appointment by phone and/or a home visits.
• Risk assessment may be needed first to see benefits outweigh impact on person’s health.
• Sensory considerations: low/no light, soft voice, slow speech, no chemicals.
• Harm can occur through over-exertion or pushing beyond person’s limits.
• Cognitive behavioural therapy is not curative for ME, and Graded Exercise Therapy has been debunked as it can cause harm.
• Nutrition – people may be so unwell they are unable to digest food and may need specialist support to have adequate nutrition and hydration.
• Check new symptoms are not new comorbidities. Common examples are:    Postural orthostatic tachycardia syndrome (PoTS) and Mast cell activation syndrome (MCAS).
• A range of comorbidities can result due to people being immobile.
• Coding of condition – Quality Improvement work for practices
• Data in practice needs to be accurate so that practice has a standardised approach to coding so people with ME can be identified and given the support and planning they need. 

 Resources

• Learna CPD module on ME
• Learn about ME webinar for GPs
• Learn about ME podcast episodes
• Learn about ME project and 
• NICE guideline for ME

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 tenth episode of our Learn about M.E. podcast series, we discuss the need for specialist support and understanding for children and young people who live with M.E. 

The right support is essential to help them access education that meets their needs alongside appropriate health and social care.

We hear from Dr Binita Kane, a Respiratory Consultant inManchester In January 2021, Dr Kane’s 10yr old daughter developed COVID and subsequently Long COVID / MECFS. Acknowledging her own limited knowledge of MECFS despite being a medical professional, this has led her on an international search for answers, culminating in her becoming a campaigner, researcher, patient advocate, champion for the Long COVID Kids charity and now a specialist physician treating patients with MECFS and Long COVID. She is now a passionate advocate for raising awareness of this neglected disease area. We also hear from  Helen Gibson, a volunteer for #ME Action Scotland, a member of M.E. Parents and Mum to a 17-year-old-daughter with M.E.

Dr Kane highlights that useful things that GPs can do are:

1.       listen to the child and parents and hear what they are saying: take it seriously

2.       consider a post viral illness if a child reports with fatigue and pain but tests are normal

3.       take a history using key questions about post-exertional malaise, family history and related conditions such as Postural orthostatic tachycardia syndrome (PoTS).

Dr Kane emphasises that this condition is not psychological. Exercise is not the answer but will worsen all symptoms. She recommended that GPs complete the Learna CPD module on M.E. to support this shift in approach.

Helen explains how her family have had to develop an expertise on the illness far beyond that which most patients/carers would expect, a direct result of M.E. being so poorly understood. She is now active in campaigning for better awareness, support and research into potential treatments for children and adults living with M.E.

Our ninth episode in the Learn About M.E. series is about GP Prescribing for people with M.E. In this episode, Dr Aileen Billsdon-McGrane, a GP, discusses what GPs need to consider when they are prescribing to support people to manage their symptoms of M.E. We also hear from Kirstie Mitchell who has a diagnosis of M.E. 

Dr Billsdon-McGrane suggests GPs need to take a holistic approach to managing M.E. and that any management plan needs to be wider than just prescribing medication. Any plans need to include how people pace themselves, manage their energy levels, and support to live with a chronic illness and the impact it has on their life, their families, and their finances. Medication cannot fix this condition but can have a role to help to manage the symptoms. 

It is highlighted that many people with M.E. can also have Postural tachycardia syndrome (PoTS), when their heart rate rises very quickly after getting up from sitting or lying down resulting in palpations or dizziness. PoTS can be managed with a medication that GPs are familiar with from other conditions. Often people can experience symptoms around allergies too such as skin or gut problems, and intolerances with food that sets off symptoms. Symptoms can be helped by antihistamines or mast cell stabilisers. 

Referrals to specialists may confirm that there is no other serious condition underlying but may not be able to offer a solution or reassurance to people with M.E. This is because M.E. affects multiple systems in the body. Therefore, it is important that GPs learn more about and understand the patterns of presentation that might be seen in M.E. to better address its challenges and complex nature, which can have a devastating impact on people’s level of functioning. 

Building trust by dedicating time to actively listen to individuals and understanding their expectations regarding medication can lead to better outcomes. The timing of starting medication can have an impact on how successful it will be. Opting to start treatment during periods with minimal external pressures, such as avoiding times of high stress or significant upcoming events like Christmas or important birthdays, may enhance its effectiveness in alleviating symptoms. 

GPs may benefit from discussing people’s understanding of how they are managing energy to avoid boom and bust as people need to be at a stable baseline before people can do more activity. It can be best to start with how to do less and accept the limitations they have because of M.E. GPs can learn more about how to diagnose and manage the symptoms of M.E. through accessing this free CPD module on M.E. Two of the assessment questions in the module relate to prescribing.

This is the eighth in our series of podcasts on Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). In this episode, we discuss the exciting new research project, Decode M.E., launched in September 2022. This is the largest M.E./CFS study in the world and aims to identify potential genetic causes of why people become ill with M.E./CFS. It is funded by the Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR). The study is led by Professor Chris Ponting at the University of Edinburgh and places people with M.E./CFS absolutely at the heart of the study. People with M.E./CFS are an essential part of the Patient and Public Involvement (PPI) steering group along with carers and other stakeholder organisations in the M.E. field.

Three guests Andy Devereux-Cooke, Co-investigator of Decode M.E., Sonya Chowdhury, CEO of Action for M.E and Co-investigator and Prof Chris Ponting discuss the project and the potential impact it can have in improving the science around M.E. Just now, little is known about what causes M.E., how to diagnose it and manage the symptoms that result. The absence of research in this area has resulted in a lack of treatments and strategies that support people with M.E. to manage their health and improve their quality of life.

The guests ask that anyone over 16, diagnosed with M.E./CFS and living in the U.K. spits for science and participates in the study. People can go online to https://bit.ly/3S24p3m and take a questionnaire that will collect valuable information on people’s lived experience:

•  People can pause and re-start the questionnaire or phone for support if they can’t complete online.
• People who meet the study’s criteria will be asked to provide a DNA sample via their saliva. A kit is then sent out and can be posted back so the DNA in the sample can be analysed.
• The criteria for inclusion in the study is strict to ensure the robustness of the evidence obtained. This may mean that some people with a diagnosis don’t go on to take part but their answers to the questions will still be useful. 

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.

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 third episode of our Learn about ME podcast series, we hear from, Dr Nina Muirhead, creator of the Learn about ME CPD learning module and, Dr Gregor Purdie, about the importance of highlighting the changes in the newly updated NICE guideline on ME/CFS: diagnosis and management. They are joined by, Helen, who lives with ME and who volunteers for The 25% ME group. Helen shares her experience in order to encourage healthcare professionals to implement the changes in the guideline. We hope this episode can increase the likelihood of people with ME getting appropriate care and support.