What Is ME?

Understanding ME

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.

Symptoms

The following information is from the CDC website. 

www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

Primary Symptoms

Also called “core” symptoms, three primary symptoms are required for diagnosis:

  • Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
    • Can be severe.
    • Is not a result of unusually difficult activity.
    • Is not relieved by sleep or rest.
    • Was not a problem before becoming ill (not life-long).
  • Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.” During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with ME/CFS may not be able to predict what will cause a crash or how long it will last. As examples:
    • Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.
    • Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.
    • Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days.
    • Keeping up with work may lead to spending evenings and weekends recovering from the effort.
  • Sleep problems. People with ME/CFS may not feel better or less tired, even after a full night of sleep. Some people with ME/CFS may have problems falling asleep or staying asleep.

In addition to these core symptoms, one of the following two symptoms is required for diagnosis:

  • Problems with thinking and memory. Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have “brain fog” to describe this problem because they feel “stuck in a fog” and not able to think clearly.
  • Worsening of symptoms while standing or sitting upright. This is called orthostatic intolerance. People with ME/CFS may be lightheaded, dizzy, weak, or faint while standing or sitting up. They may have vision changes like blurring or seeing spots.

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Treatment

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.

Pacing - a management strategy

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:

  1. Making a first priority to conserve energy for essential daily living activities.
  2. Conserving some energy for unexpected events that will require additional energy.
  3. Budgeting some time to share with others through technology or in person. Suggests patients should be aware this can be exhausting and it is important to rest before and after.
  4. Working towards saving a little energy every day in order to get stronger and invest in future health.

More details on pacing are available in the Primer page 15 or the CDC post exertion malaise section.

Graded exercise therapy

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. 

Cognitive behaviour therapy

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.

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