Learn about ME – Détails, épisodes et analyse

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Learn about ME

Action for M.E.

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Fréquence : 1 épisode/162j. Total Éps: 13

This series of podcast episodes complement the CPD accredited module on Myalgic Encephalomyelitis (ME/ Chronic Fatigue Syndrome (CFS), originally developed by Dr Nina Muirhead with the UK ME Research Collaborative. The module was updated in January 2023 in partnership with Doctors with ME and drawing on international expertise. The podcasts and the CPD module are relevant to GPs and other health and social care professionals treating not just M.E. but Long COVID too. The CPD module is free, available anytime online and offers 1 CPD point. It normally takes less than an hour to complete and is based on case studies and the latest biomedical evidence. Each question offers further reading to develop and increase knowledge. You can access this free module here: https://www.studyprn.com/p/chronic-fatigue-syndrome

IMPORTANT Learn about M.E. podcasts contain general information about ME/CFS shared by professionals and individuals with lived experience. This is not medical advice, and should not be treated as such. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider. Any symptom management approach must be considered on a case-by-case basis by an experienced medical professional.

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https://www.studyprn.com/p/chronic-fatigue-syndrome
13 partages
https://www.nice.org.uk/guidance/ng206
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https://www.potsuk.org/
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https://www.buzzsprout.com/1717775/fan_mail/new
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https://mecfs.buzzsprout.com/
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https://www.buzzsprout.com/1717775
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https://youtu.be/jGN_BBhSz7U?si=cOhz0SHq4uMdzFzv
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Episode 13 – Learn about ME and Multi Morbidities

mardi 23 juin 2026 • Durée 20:07

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Episode 13 – Learn about ME and Multi Morbidities

In this thirteenth episode we discuss other health conditions that can occur alongside a diagnosis of Myalgic Encephalomyelitis (ME) or Long Covid. It’s estimated that between 75% and 91% of people with ME also have another condition.[1]

Common morbidities are Postural Orthostatic Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS).

In this episode, our guests Dr Amy Small and Mary McGowan share their insights and experiences of the impact of the interaction of these health conditions with ME or Long Covid.

Dr Small outlines an approach towards treating these conditions that highlights the importance of being curious about what is going on in that person’s life and exploring how post exertional malaise (PEM) is affecting them. With PEM, the impact may show up days after an activity. So, giving information on pacing and how to conserve energy is key to supporting the person to manage their health and energy.

Symptoms of PoTS can mimic anxiety, so GPs need to explore these types of symptoms. This may take more time than a standard appointment. We also discuss what adjustments could be offered by GPs to build a relationship with the patient over time, taking a light touch approach. Mary asks that GPs educate themselves about these conditions and to plan and review the care, taking a holistic view.

Clinical cases on these conditions were added in the recent update to Learna’s free continuing professional development (CPD) module on ME/CFS, which this podcast series was produced to complement.

Resources

Learna CPD module on ME: https://www.studyprn.com/p/chronic-fatigue-syndrome
Learn about ME GP webinar: https://youtu.be/jGN_BBhSz7U?si=cOhz0SHq4uMdzFzv
NICE Guideline on ME/CFS (current clinical guidance on ME/CFS in Scotland): https://www.nice.org.uk/guidance/ng206
Learn about ME podcast series: https://mecfs.buzzsprout.com/
Action for ME professional development resource: https://www.actionforme.org.uk/resource/professional-development-for-me/
World ME Alliance Medical Education Hub: https://worldmealliance.org/medical-education-hub/
What is Pacing?: https://www.actionforme.org.uk/resource/what-is-pacing/
Pacing and energy management: https://www.actionforme.org.uk/supporting-you/pacing-and-energy-management/
Postural Orthostatic Tachycardia Syndrome (PoTS): https://www.potsuk.org/
Mast Cell Activation Syndrome (MCAS): https://www.mastcellaction.org/

[1] Jesús Castro-Marrero Ph.D. a, Mónica Faro M.D. a, Luisa Aliste Ph.D. a, Naia Sáez-Francàs M.D., Ph.D. b, Natalia Calvo Ph.D. c, Alba Martínez-Martínez M.Sc a, Tomás Fernández de Sevilla M.D., Ph.D. a, Jose Alegre M.D., Ph.D. a. (September–October 2017). Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study. Psychosomatics Volume 58, (Issue 5), September–October 2017, Pages 533-543. Available at Doi: https://doi.org/10.1016/j.psym.2017.04.010

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Episode 12 – Learn about Severe ME

vendredi 28 mars 2025 • Durée 43:53

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In this 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.

Episode 3 - Learn About M.E. and the new NICE Guideline

mercredi 8 décembre 2021 • Durée 28:32

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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.

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Episode 2 - Learn About M.E. and Long Covid

vendredi 28 mai 2021 • Durée 39:22

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In the second episode in our Learn about ME podcast series we are exploring Long Covid and how the study of this condition can impact on our understanding of ME/CFS. We hear from Dr David Strain who plays a leading role in the BMA’s response to Long Covid; Dr Nina Muirhead, creator of the Learn about ME CPD learning module and Alec Finlay who has lived with M.E. and now has Long Covid. We hope that this information can help health and social care professionals to offer appropriate support to people living with either condition.

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Episode 1 - Learn About M.E.

jeudi 25 février 2021 • Durée 31:29

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A discussion with Dr Nina Muirhead about the free Continuing Professional Development (CPD) module she has developed for GPs and other health professionals about the diagnosis, treatment and management of M.E. or chronic fatigue syndrome (CFS).

Ruth Richardson, from the charity Action for M.E. talks to Dr Muirhead as well as a GP who has accessed the CPD and Anna and Craig who live with M.E.

Each person tells how they feel the module would improve the experience and outcomes for both the professional and the patient.

you can access this free module here: https://www.studyprn.com/p/chronic-fatigue-syndrome

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Episode 11 - Learn about ME and Occupational Therapy

lundi 20 mai 2024 • Durée 20:54

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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.

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Episode 10 – Learn About M.E. and Paediatrics

lundi 20 novembre 2023 • Durée 24:49

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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 on M.E. to support this shift in approach.

Episode 9 - Learn About M.E. and GP Prescribing

lundi 10 juillet 2023 • Durée 27:20

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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.

Episode 8 - Learn About M.E. and Decode M.E.

mercredi 15 février 2023 • Durée 27:47

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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.

Episode 7 – Learn About M.E. and Physiotherapy

mercredi 18 janvier 2023 • Durée 28:31

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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.

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