ME/CFS and long COVID are conditions that cause your body to not work properly, they are not psychological conditions. But it is not uncommon to need support with mental health when living with physical symptoms that don’t go away. Professional support can help you learn to cope with the challenges your illness brings, adjust to a new way of life and find meaning within your energy limits.
Taking the first step
Acknowledging that you need help is the first step and often the hardest. Needing support is is not a sign of weakness or having failed. Major illness is one of the most difficult stresses in life, and this stress is compounded by the lack of understanding people living with ME/CFS and long COVID often face. These conditions are long term illnesses, so it is also inevitable that other life difficulties will happen along the way, adding to your stress.
It is okay to reach out for help. Getting support for your mental health is just as important as getting support for your physical health. Your wellbeing is important.
Talk with your GP
Your GP should be your first port of call for mental health support. This can be difficult for people living with ME/CFS and long COVID, because some people think that asking about mental health support may make the doctor think your condition is psychological. A good GP will understand that living with a disabling chronic illness can impact your mental health and that this doesn’t mean your chronic illness is itself psychological.
Medicare rebates for GP telehealth services are available, which can help reduce the energy needed to speak with your GP about your mental health support needs, as these tend to be long conversations. To be eligible for the rebate, you must have seen the GP (or another GP at the same clinic) face-to-face in the previous 12 months.
Medicare rebates are available for 10 individual sessions (and 10 group sessions) per calendar year with a psychiatrist, eligible GP, psychologist, social worker, or occupational therapist. To access these rebates, your GP needs to prepare a Mental Health Care Plan for you. A Mental Health Care Plan doesn’t mean that your ME/CFS or long COVID is viewed as psychological, or “all in your head”. It simply outlines how your illness and other life events have affected your mental health.
Finding a mental health professional
Your GP could refer you to a mental health professional or you could suggest someone to your GP yourself. The ME/CFS and long COVID community can be a good source for healthcare professionals others have found helpful. While there are many different approaches to mental health support, what’s most important is that you feel safe and comfortable with the healthcare professional.
Things to consider asking a mental health professional:
- How do they approach working with people with chronic illness?
- What do they understand about ME/CFS or long COVID?
- If they don’t know much about your condition, are they open to learning more about it?
ME/CFS and long COVID are conditions that cause your body to not work properly and there are no evidence-based treatments or cures. Emerge Australia follows an evidence-based approach to treatment and does not endorse treatments which assume that changing thought patterns or behaviour (including exercise) fixes ME/CFS or long COVID. The scientific evidence does not support these treatments. Emerge Australia does support mental health care that aims to help people with ME/CFS and long COVID cope with living with such disabling diseases.
If your healthcare provider does encourage you to exercise or change your way of thinking as a treatment or cure, we encourage you to refer them to our website.
Cognitive behaviour therapy (CBT)
Cognitive behaviour therapy (CBT) is often used to help people living with many different chronic conditions cope with their illness. With this approach, CBT is not used to treat the underlying condition but is a supportive therapy to help you cope with and adjust to living with a long term condition.
CBT can help people with ME/CFS and long COVID cope with their illness.
CBT is not a treatment for ME/CFS or long COVID. Emerge Australia does not support the use of CBT to attempt to change your thinking, as these conditions are not psychological.
Resources for finding a mental health professional
What to expect
It is normal to feel anxious before your first appointment with a mental health professional. It can be scary to talk with someone you don’t know about personal issues, and it may be the first time you’ve talked with anyone at all about some issues.
It’s important to remember your therapist is there to support you in the best way they can. Whether they have some or not much experience with a person who lives with ME/CFS or long COVID, they can still provide you with support. They are trained to listen.
Begin the conversation where you feel comfortable. You have the power to start with what feels most natural and safe for you.
Express your needs and don’t hesitate to say what you’re hoping to get out of the sessions. Whether it’s a listening ear, guidance, or specific resources, they are there to help.
It is common for a therapist to ask questions about you and your illness, and about family background and history during your first session. Asking about your family background or childhood doesn’t necessarily mean that your therapist considers your condition to be primarily a mental health issue, or due to childhood trauma. This is a routine part of a first session, much like how a doctor might take your blood pressure. But it is okay to ask your therapist to clarify what they’re hoping to learn through those questions.
A standard session with a mental health professional lasts for 50 minutes. This is a long time to talk, even more so when talking about emotional issues. It is common for even physically healthy people to feel drained after speaking with a mental health professional for the first time. For people with ME/CFS or long COVID, post-exertional malaise is a likely after-effect. Be gentle with yourself after the session and have a plan in place to manage your PEM. You could also ask for shorter sessions, if a standard session length will be too long for you.
After speaking with your therapist for the first time, if you feel they could benefit from understanding more about your condition, you can suggest they contact Emerge Australia and access our clinical education resources, which include online training about ME/CFS and long COVID.
Resources
- https://toolkit.lifeline.org.au/articles/general/what-to-expect-in-your-first-therapy-session
- https://psychcentral.com/lib/what-to-expect-in-your-first-counseling-session#therapy-types
- https://www.emerge.org.au/continuing-professional-development/
Financial cost of mental health support
The financial cost of mental health support can vary considerably. Below we have outlined some options to help cover at least some of the cost.
Medicare rebates
Under a Mental Health Care Plan, prepared by your GP, you are eligible for Medicare rebates for up to 10 individual (and 10 group) sessions with a psychologist, social worker or occupational therapist, psychiatrist or eligible GP in a calendar year. If these sessions are bulk-billed, then there is no cost to you. If they are not bulk-billed, then you will have to pay the gap between the fee charged by the mental health professional and the Medicare rebate.
You can find out the cost per session and Medicare rebate (rebates vary according to the type of practitioner you see) from your mental health professional before you book an appointment, to determine how much you would have to pay for each session. If you reach the Medicare threshold in a calendar year, Medicare will cover more of the cost of the sessions for the rest of that calendar year.
Private health insurance
You may be eligible for rebates for some of the cost of mental health support from your private health insurance, if you have appropriate Extras cover. You should check with your insurer and your policy to find out how much would be covered.
It is important to note that you cannot use your private health insurance to claim out-of-pocket expenses from a session for which you received a Medicare rebate. For each session, you can either receive a rebate from either Medicare or your private health insurance, but not both. Some people use their private health insurance to help fund sessions once they have used up their 10 Medicare-rebated sessions in the calendar year.
Free services
Some free mental health support services are available, but they are limited and often have waiting lists.
- Primary Health Networks (National, as available) Primary Health Networks (PHN) and some local health services offer free mental health support. To find your local PHN, and learn more about their services, click here.
- New Access (QLD and NSW) New Access offers 6 free mental health coaching sessions for people who aren’t currently seeing a psychologist or psychiatrist. The New Access program, developed by Beyond Blue, is delivered by Primary Health Networks. Currently, it is only available in Queensland and NSW. To find out more: https://www.beyondblue.org.au/get-support/newaccess-mental-health-coaching
- Headspace (National) Headspace provides free mental health support for young people (aged 12-25). Visit the website to find your local Headspace clinic and to find out more: https://headspace.org.au/
- Online services (National) There are a range of online tools and self-help services which are free to access. Below we have listed just a few.
eCentre Clinic Chronic Conditions Course:
This course is people living with for any chronic condition, and does not aim to treat the underlying condition but help participants cope living with it https://www.ecentreclinic.org/chronic-conditions-course
Telehealth – accessing support when you can’t get to a clinic
If you live in a remote area, or are unable to leave the house, it might be difficult to see a mental health professional in person. Most mental health services offer telehealth video or phone appointments. If there is a fee, you may be eligible to receive a Medicare rebate to cover some or all of this cost. Speak with the service about out-of-pocket costs before booking an appointment.
