Although there are no TGA approved treatments for ME/CFS or long COVID, healthcare practitioners can do a lot to support people with these conditions. This includes helping patients with:
- Energy management: pacing and rest
- Step-wise symptom management
- Practical support
In addition to our healthcare practitioner information, the Emerge Australia webpage has a wealth of information practitioners may find helpful to share with their patients.
Energy management
Energy management strategies of pacing and rest are crucial self-management strategies for ME/CFS as they minimise harm caused when patients undertake activity beyond their capacity and trigger post-exertional malaise (PEM).
The aim of pacing is to minimise or avoid triggering PEM, by keeping physical and cognitive activity within the available energy reserves, often referred to as the “energy envelope”
Pacing
Pacing involves patients listening to their bodies and learning to stop before, or as soon as, they feel an increase in symptoms [1]. This does not necessarily mean their limitations improve, but symptoms and capacity may become more predictable.
Rest
Rest is a crucial part of energy management, both to conserve energy and to aid recovery from activity. Rest needs to be restorative. Rest will look different for each individual but often requires the patient being recumbent, with eyes closed and minimal external stimulation.
Energy management and healthcare
Attending medical appointments or testing centers may exacerbate symptoms for patients with ME/CFS or long COVID. People with ME/CFS often present well, however they will likely need rest before and after an appointment. For those with more severe symptoms, clinic visits may not be possible.
Telehealth is a valuable resource for all patients to manage their energy.
Emerge Australia has created a downloadable resource for Creating an ME/CFS accessible healthcare practice
Step-wise symptom management
ME/CFS patients and those with long COVID typically present with a multitude of symptoms indicating a multi-system disorder.
This can be overwhelming for both the clinician and patient to work through. However, by taking a structured, step-wise approach, health professionals can work with their patient to rank their symptoms and address them one at a time, starting with the most disruptive. This can be done using the Symptom Severity and Hierarchy Profile and Sleep and Pain profile.
Our telehealth nurse can support patients to work through the Symptom Severity and Hierarchy Profile before discussing further with their treating doctor.
Although there are no TGA approved treatments for the underlying cause of ME/CFS, medication may help alleviate some symptoms (e.g. pain, orthostatic intolerance, insomnia). ME/CFS patients are typically sensitive to pharmaceuticals, so it is advisable to start on low doses and titrate up slowly [2].
It is also common for patients to use nutritional and herbal supplements. Ensure you have all medications and supplements on file and consider safety, effectiveness, and possible interactions.
Paediatric and adolescent ME/CFS
ME/CFS does occur in children and adolescents. One peak age of onset for ME/CFS is between 11-19 years of age, with a higher prevalence of girls after puberty. ME/CFS does occur in younger age groups. Health Practitioners play a key role in ensuring better outcomes for children and adolescents with ME/CFS by identifying ME/CFS early and working with the young person and their caregivers to provide:
- Early diagnosis and empathetic, informed health care.
- Assisting the young person with designing and monitoring their own management plan as developmentally appropriate. This should include pacing, rest and step-wise symptom management.
- Helping with strategies to re-engage peers and liaise with schools.
This consensus primer was published in 2017 and provides diagnosis and management advice specific for children and adolescents “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer”
This is an open access paper that provides a summary of the current research on ME/CFS, diagnosing ME/CFS using the 2015 NAM criteria and management options Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Consensus recommendations published in the Mayo Clinic Proceedings
Practical Support
Like any debilitating, long-term illness, ME/CFS and long COVID are difficult to live with and can have a wide-ranging impact on patients’ lives.
Psychosocial support
Psychological therapy may be appropriate to help patients cope with living with a disabling chronic illness, or to help treat any secondary mental health issues, such as reactive depression or anxiety. However, psychological approaches should be considered adjunctive management approaches, as they do not treat the underlying cause of ME/CFS or long COVID, and are not curative.
In the past, a form of cognitive behaviour therapy (CBT) was used to address symptoms of ME/CFS. This approach was based on the false assumption that ME/CFS patients have an irrational fear of activity, based on “false beliefs” that they had a physical illness which would be made worse by activity, and had become activity avoidant. The aim of the therapy was to address the patient’s fear by challenging their supposed “false beliefs”, and encourage activity. This approach is no longer recommended to treat ME/CFS [3], as encouraging activity can result in harm to patients if they push themselves beyond their limits. Instead, minimising activity and pacing is the recommended approach to managing PEM in ME/CFS [3].
While psychosocial support may be of benefit to some patients, it is important to explain to your patient why you are making this recommendation. Reassure them that you do not believe ME/CFS or long COVID to be a psychological condition or the result of “false illness beliefs”.
Financial and other support
More than two-thirds of Australian ME/CFS patients live in poverty. Financial stress and uncertainty are significant [4].
For paediatric and adolescent patients, school and social disruptions are common.
“ME/CFS is the most common cause of prolonged school absence due to illness” [5]
Assisting patients to access support such as NDIS, Centrelink, work and school accommodations, parking permits and heating/cooling concessions will help the patient manage their energy and symptom levels.
For those who are house or bed-bound, support from carers becomes critical as simple daily tasks such as preparing food or attending to personal hygiene become difficult or impossible.
Supporting caregivers
Informal caregivers often provide significant levels of support. Ensure that caregivers are supported and linked with appropriate services. Emerge Australia has a series of information sheets dedicated to carers of people with ME/CFS.
Do no harm
Exercise
In the past, people with ME/CFS have been encouraged to exercise as a treatment for their condition, as the condition was considered primarily the result of physical deconditioning. However, studies have shown exercise exacerbates symptoms in ME/CFS, and any deconditioning patients experience is secondary to their ME/CFS.
Current recommendations for ME/CFS patients are to minimise activity that results in PEM, with a primary goal of maintaining a safe level of activity. This safe level will depend on the individual patient and will likely fluctuate over time.
Graded exercise therapy (GET) is no longer recommended for ME/CFS as there is a risk of harm to patients when they are encouraged to push beyond their limits [3].
Resources
ME/CFS accessible healthcare practice
Emerge Australia Stop, Rest, Pace webpage
Patient Education Workshop: Building a Post Exertional Malaise (PEM) Toolkit
System Severity and Hierarchy Profile
References
1. Jason, L., Benton, M., Torres-Harding, S. & Muldowney, K. The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. Patientient Education and Counselling 77, 237–241 (2009).
2. Carruthers, B. M. et al. Myalgic Encephalomyelitis – adult and paediatric: international consensus primer for medical practitioners. (2012).
3. NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. (2021).
4. Emerge Australia. Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019. (2019).
5. Rowe, P. C. et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Frontiers in Pediatrics 5, (2017).
