© 2021 ME Australia. All Rights Reserved.
ME is a disease that places a significant burden on up to 250,000 Australians and their families. There is currently no treatment or cure. The lack of meaningful biomedical research funding for ME, means patients and their families will wait longer for diagnostic tools, treatment and a cure.
While waiting for a cure, often the situation for people, especially those with severe ME is dire. People with ME are struggling to get appropriate primary health care to manage their symptoms and have problems accessing support to do things most people take for granted. Alongside meaningful biomedical research funding, creating Australian clinical guidelines for ME is key for people to receive appropriate primary care and to access services.
ME Australia is working alongside other organisations and individuals, to bring forward change to improve the lives of these often neglected Australians and their families. Contact us if you would like to work with us to achieve change.
The following information is from the CDC website.
Also called “core” symptoms, three primary symptoms are required for diagnosis:
In addition to these core symptoms, one of the following two symptoms is required for diagnosis:
There is currently no cure or approved treatment for Myalgic Encephalomyelitis (ME). The Centres for Disease Control and Prevention (CDC) suggests some symptoms can be treated or managed, noting that treatment might provide relief for some patients, but not others and learning new ways to do activities can be helpful.
The CDC notes patients should talk with their doctors about all potential therapies, because many treatments that are promoted as cures are unproven, often costly, and could be dangerous.
The ME – Adult & Paediatric : International Consensus Primer for Medical Practitioners (Primer) is clear that pacing is not a cure, but it is essential for patients to make the best use of their limited energy. Pacing aims to prioritise energy needs and budget for its use. The objective with pacing is to maximise daily functioning and activity endurance while avoiding post-exertional physical and mental exhaustion. The Primer suggests patients should budget their energy by:
More details on pacing are available in the Primer page 15 or the CDC post exertion malaise section.
One of the unproven treatments often suggested for ME, is graded exercise therapy (GET). This approach has patients increase their physical activity over time based on a prescribed exercise plan. This is seen as helping improve sleep, mood and pain. The ME: International Consensus Criteria notes the key feature of people with ME is an inability to produce sufficient energy on demand due to their disease. Advising that following exertion – symptoms are exacerbated (e.g. increase in pain), there is rapid and marked increase in physical and mental exhaustion, exhaustion can occur straight after an activity or over several hours or days. The systematic review by the US Agency for Healthcare Research and Quality found there was no evidence that GET was effective in treating ME or CFS, once the broad Oxford CFS criteria was excluded. Patients surveys have also found often people get worse (e.g. go from having moderate ME to severe ME). For example, the UK’s ME Association found graded exercise therapy made 78% of respondents worse, a 2015 Monash University found similar results in Australia.
There are two types of cognitive behaviour therapy (CBT) which patients with ME could be offered. One is a supportive therapy, which focuses on ways to cope and manage the impact of this chronic disease on their daily lives. This type of CBT and other professional counselling can be helpful to patients.
The other type of CBT can be harmful. It gets patients to focus on beliefs, attitudes and behaviours that practitioners are seen as barriers to people getting well. This type of CBT is often couple with GET. As noted above, patients surveys indicate people can get worse.
The type of CBT offered is highly dependent on the health professional. Unfortunately, as the 2015 Institute of Medicine Report points out many health professionals have mistake beliefs that ME is a mental health condition, consider it a figment of the patient’s imagination, or are skeptical about the serious nature of the illness.