Communicating your limitations
Many symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.
As their energy limitations are reached and their battery starts to run flat, these symptoms can get worse. This can make medical appointments stressful and remembering all the information they want to discuss with their doctor difficult.
Emerge Australia has put together some helpful ideas and tools to help people eho live with ME/CFS and long COVID get the most out of their medical appointments.
We will introduce the symptom severity and severity hierarchy scale, and show how to use the NAM criteria for diagnosis of ME/CFS.
Booking your medical appointment
Before booking a medical appointment, it is important to consider what support or preparation may be helpful.
If more than one or two topics is to be discuss, book a double appointment so the doctor has more time to cover each question. If possible, book medical appointment at the time of day when symptoms are normally at their lowest.
Depending on the severity of ME/CFS or the symptoms experienced, some people may need a quiet place to lie down while waiting for the doctor. Ask the the receptionist when booking the appointment if this can be arranged. They can also let the doctor know that they need to provide a space to lie down during the appointment.
Bringing a support person to your appointment
Not everyone will need or want a support person to accompany them to their medical appointment. For those who do, it is a good idea to decide the role the support person will take and talk with them about this before the appointment.
Before talking to the support person, consider:
- Do you want or need someone to drive you to and from your medical appointment?
- Will you want the support person to come into the waiting room or the doctor’s room, or wait in the car?
- If your support person comes into the doctor’s room, will you want them to advocate on your behalf, or just listen and take notes?
If deciding to bring a support person or advocate to a medical appointment, consider asking them to help prepare. This will allow time to discuss their role and how they can support.
You can find valuable information that Emerge Australia has created to support carers to advocate for fair and equitable treatment of people living with ME/CFS on the Emerge Australia website.
Once the appointment is booked, use a diary to record the appointment date and time, the information to bring, and the contact details of any healthcare team members.
Think of each appointment as a brainstorming session.
It is ok to seek a second opinion or connect back with the primary doctor or GP before making a decision. Unless the decision is an emergency, take time to understand what has been recommended.
Find out what financial help is available for medical appointments
Medicare rebates change from time to time, so it is best to ask the GP’s receptionist what assistance is available to cover appointment costs and what out-of-pocket expenses should be expected. Public hospitals are free, and you may be able to receive care if your GP provides a referral. Often the waiting list is long for non-urgent care.
Preparing information for appointments
Having information for appointments prepared beforehand can help to explain the aim of the appointment.
Here is a sample template for appointments, or feel free to create one.
Symptom severity and severity hierarchy profile
For people who live with ME/CFS, recording symptoms can feel like a huge task and an overwhelming process. Emerge Australia recommends using the symptom severity and severity hierarchy profile to help provide an overview of symptoms to doctors in a simple and straightforward way.
This can help make sure that the doctor knows how many symptoms you have, how severe they are, and how to best manage your symptoms to improve your quality of life.
If you find completing the symptoms profile takes a lot of energy, try completing it over a few days or weeks, or ask for help from family or friends.
For information on how to fill in the symptoms severity and severity hierarchy profile visit the Emerge Australia Stepwise Symptom Management page.
Making informed decisions about your care is essential.
There are currently no cures, evidence-based treatments, or Therapeutic Goods Administration (TGA)-approved medications for ME/CFS or long COVID.
Emerge Australia recommends asking a few key questions before starting any treatment—especially those claiming to cure or lead to recovery.
Click here to learn what questions to ask.
Sharing your record of activity
Many people who live with ME/CFS utilise activity-symptom trackers to support them in pacing. It can also be useful to show your doctor these records, to support them to understand how your symptoms are affecting your life and the level of activity you can complete over a week (or more if you choose.) You may want to share an example of one or two days, or a whole week with your doctor. Using simple entries into a calendar or diary is an easy way to record your activity.
Everyone deserves to be treated with respect
Doctors and their patients should work together in a professional manner. If you have concerns with the treatment of a healthcare professional, please contact the Australian Health Practitioners Regulation Authority (AHPRA), the agency that regulates health practitioners in Australia.
Additional Support
If you need additional support to prepare for an upcoming doctor’s appointment, or when commencing with a new doctor, consider making an appointment with our Telehealth Health and Support Service. We will do our best to connect with you with additional resources, or to talk with you about your goals and how to generate a plan for your appointment.