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Exercise and fatigue in myasthenia gravis – how to assess fatigue and advise on exercise?

Webinar New

23 Jan 2025 16:00 - 17:35

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This webinar has received sponsorship from argenx UK limited. The sponsor has had no input into the educational content or organisation of the session.

Neuromuscular Academy session

Join our webinar to deepen your understanding of fatigue management in Myasthenia Gravis (MG). Discover how to differentiate fatigue from fatigability, use the right tools to assess its impact, and learn why tailored exercise programs are essential for improving strength, endurance, and quality of life in MG patients.

Webinar objectives
  • Recognising fatigue in patients with MG and distinguishing from fatigability.
  • Measuring fatigue - finding the right tool.
  • Managing fatigue - the importance of exercise for all MG patients.

Summary

Exercise and fatigue in myasthenia gravis – how to assess fatigue and advise on exercise

Education and exercise are the best interventions for fatigue, a common symptom in myasthenia gravis (MG).

That’s according to Dr Maria Elena Farrugia, consultant neurologist at NHS Greater Glasgow and Clyde, and Caroline Carmichael, MG nurse specialist, Queen Elizabeth Hospital, Glasgow, who shared their insights during a recent Neuromuscular Academy webinar.

Read on for our summary of the event.

What is fatigue and how is it measured?

Fatigue is a subjective experience, ranging from tiredness to severe exhaustion, and is a common symptom across neurological conditions, said Elena. In MG, the prevalence ranges from 44% to 82% of patients, increases in line with disease severity and activity, and is more pronounced in women than in men.

It consists of two components: peripheral fatigue, or fatigability, which is associated with muscle fatigue and a lack of stamina, and central fatigue, which is unrelated to muscle weakness. While fatigability is receptive to MG treatment, central fatigue is not. “Fatigue is common and distinct from fatigability in MG,” said Elena. “Immunosuppressant escalation is not the solution.”

Explaining the mechanisms of central fatigue, Elena said that, in the presence of muscle weakness, a signal is communicated to the central nervous system to temporarily down-regulate physical activity. This protects against further damage, which is important during active MG. However, this feedback loop can become chronic, switching off physical activity on a longer-term basis. This results in a chronically negative affect on muscle mass and strength, and significant deconditioning.

“I think it is very important to educate patients and caregivers about the concept of fatigue early on, probably at the time of diagnosis, so that they are able to recognise it,” she added.

Measuring fatigue in clinic is important, but it can be challenging to know which of the many available tools to use. Elena said the Modified Fatigue Impact Score (MFIS) was “very practical in terms of its application to our patient group”. It has 21 items covering three domains (physical, cognitive, and psychosocial) and has been designed to assess fatigue overthe previous four weeks.

Fatigue management – a pilot study

In 2018, Elena’s team used the MFIS during a fatigue management study. It recruited ten patients with stable MG and significant fatigue. They worked with an MG nurse, a neuromuscular physiotherapist, and neuro-psychologist on a 10-week programme of education and exercise.

They found a trend for improvement in the physical and psychosocial MFIS domains, thoughnot in the cognitive domain. At three month follow up, MSIF scores had returned to close to baseline. A similar pattern was recorded using the Visual Analogue Fatigue Scale.

MG, fatigue, and exercise

While many people with MG feel they should avoid physical activity as they worry it would exacerbate symptoms and increase music weakness and fatigue, Caroline said that “exercise, in itself, is medicine”.

“MG encourages a sedentary lifestyle that increases weakness in muscle groups, leading toweaker muscles that will fatigue more,” she added.

Carefully prescribed and structured exercise programmes can improve aerobic exercise capacity and muscle strength, she went on. This can help maintain mobility, increase bone strength, and reduce fatigue. It can help people regain their previous functional level, while minimising the risk of secondary complications such as heart disease, obesity, falls, and poormental health, all of which can complicate MG.

Caroline advised talking to people about exercise as soon as possible after diagnosis, and recommending they start as soon as they are able after an MG crisis.

Everyone is different. When developing an exercise plan, healthcare professionals should understand the individual’s baseline abilities, and any other health conditions, as well as their motivations and expectations. “It is important to be realistic”, said Caroline. Factors such as the availability and accessibility of facilities should also be considered. The enjoyment factor, she went on, “is more important than anything”. “Patients need to enjoy the idea of going to exercise, and the benefit that they get from that.”

Exercise can be anything that “gets the person moving quickly enough to raise their heart beat, breathe a little faster, and feel a little warmer”. People could start with gentle range of movement exercises, with a focus on core strength, and light resistance exercises, she said.Daily walks, swimming, and yoga can all be beneficial. Ideally, patients would eventually progress to weight training.

Said Caroline: “From the age of about 40, strength, endurance, balance, bone density and flexibility all decline, and, as a result, muscle power is also lost at a faster rate. Muscle strengthening activities slows that natural decline in muscle strength and bone density.” Patients, however, understand MG is a muscle weakening condition and can be wary of strength training. Education and support, then, is crucial.

Caroline’s top tips for patients starting out on an exercise journey included listening to their body, and always stopping before they experience muscle fatigue. They should also try to pace their activities, splitting them up across the day, and make sure they keep some energy back “for the fun stuff”.

Presentation slides- Dr Maria Elena Farrugia

Presentation slides- Caroline Carmichael

Raising awareness, improving outcomes

Neuromuscular Academy is the first bespoke course for healthcare professionals to receive expert training in neuromuscular conditions like spinal muscular atrophy.