What is ME/CFS?
ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems. A diagnosis of ME/CFS can raise many different questions. There is often a lot of information to absorb, and advice from many different sources.
This page will provide you with information to help you understand the symptoms people living with ME/CFS experience and how they might affect their ability to participate in everyday life. It will also provide guidance on the available supports and some practical steps to help you manag
The core symptom of ME/CFS is post-exertional malaise (PEM), which means that physical or mental effort result in an increase in symptoms, and this increase in symptoms can be delayed up to 72 hours. This often makes it difficult to manage the illness as it may take a number of days for the impact of an activity to show. General symptoms include:
ME/CFS can be very unpredictable, and symptoms can change within one day and over time. In addition to PEM, general symptoms include:
- extreme fatigue. This is more than “being tired”
- cognitive dysfunction (difficulty thinking clearly)
- unrefreshing or disturbed sleep
- general or local pain that changes – in children this is often reported as stomach aches or headache
- gastro-intestinal problems
- feeling light-headed or dizzy when standing
- sensitive to light/smell/sound/temperature (you might not be affected by these but the person with ME/CFS may find them very difficult).
Managing the Symptoms
Stop, Rest, Pace
The individual needs of a person living with ME/CFS will depend on how severe their illness is. There will likely be changes in their ability to attend school/work, help around the home, and ability to socialise with friends. This also means there may be changes in how your household works. People living with ME/CFS often ask if there is something they did wrong or if there is a treatment they have not heard about. It is important to understand that:
- currently, we do not know what causes ME/CFS. We do know that there are many biological changes in the body, and these changes cause many symptoms. It is not something that they did wrong or a psychological illness.
- there are no proven treatments for ME/CFS, although there is reason for hope with researchers making advancements each day.
- when supporting a person living with ME/CFS, the focus should be on managing symptoms to improve their quality of life.
- take a minute to stop what you are doing, evaluate what activities are increasing symptoms, and put into place a rest and pacing (energy management). This may help you and the person you provide care for to take some control over the situation.
Where to start?
Advocating for a person living with ME/CFS
ME/CFS is still poorly understood by researchers and medical providers although there have been many positive changes in the last few years. You may find yourself in the role of advocate as well as concerned parent/partner/friend when it comes to medical care and school/work accommodations.
Talking with medical providers
Prepare for medical appointments by prioritising what you need to speak with the doctor about; a general guide is one issue per short appointment. ME/CFS can be complex to manage so consider booking a double appointment.
People living with ME/CFS can become isolated from their family and friends due to the need to rest. It is important to explore ways for them to see friends and participate in activities they enjoy.
Caring for young people with ME/CFS
Young people, especially children under the age of ten, might have trouble telling you that something is wrong. They may not realise that the loss of stamina or other symptoms they are experiencing are abnormal or they may not have the words to describe what they are feeling. You might notice changes such as reduced physical activity, trouble with concentration that is new, or comes and goes, or that your child is not playing as energetically as they once were.
Your doctor can help you and your child decide which symptoms to work on first. This is called a “step-wise symptom management plan”, and you can consult with the Emerge Australia Telehealth Nurse about this.
Looking after yourself
Identify support and reach out when you need it. Some options for you to think about include:
- Support from family and friends. Regular breaks are important for your own self-care.
- Developing an emergency care plan is also a good idea if you are suddenly unable to provide care in the event of illness or accident. Knowing all important information is in one place and that someone understands the unique care needs of the person living with ME/CFS will help reduce stress.
- Join a support group. There are online groups that you may find helpful, make sure that they have clear group guidelines that you agree with, activity is moderated and check the group privacy settings. Think carefully about how much personal information you share online. The National Carers Gateway also has a range of support networks and information available.
- Speak to your child or adolescent’s school to see what supports they can offer.
- Investigate if you are eligible for financial support from the Australian Government for Carer Allowance or the Carer Payment and make sure you are registered for the Medicare safety net.
- Talk to your health care professional about any concerns that you may have.