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