Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
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.
The main feature of ME/CFS is post-exertional malaise (PEM). PEM is when symptoms get worse after physical or mental activity.
What is Long COVID?
Some people who have had COVID-19 experience symptoms well beyond their initial illness, often for weeks or months. This is now known as Long COVID. Research has found that the symptoms of Long COVID, in particular PEM, are very similar to the symptoms of ME/CFS.
Understanding the energy limits of ME/CFS and Long COVID
People with ME/CFS and Long COVID don’t make as much energy at a cellular level as a healthy person. Their body is like a battery that never fully recharges and drains faster than normal.
When their ‘battery’ gets low, their symptoms get worse and their ability to function and move their bodies declines. If they keep pushing even though their battery has drained, they will ‘crash’. This is the ‘red zone’ known as PEM, when complete rest is the only safe activity.
People with ME/CFS or Long COVID are not able to do all of the activities they used to be able to do. They can experience an increase in symptoms after simple activities, which would not have been a problem before ME/CFS came into their lives.
Remember – your friend’s battery is different from when they were healthy. What they can do in a day will be less than before. Every day is different and having friends who understand and are flexible makes an enormous difference.
How to support your friend with ME/CFS or Long COVID to stay connected
People living with ME/CFS or Long COVID can become isolated because they need to rest, avoid loud and stimulating environments, and limit the time they are using energy to socialise. Some people can find this difficult to understand, which leaves the person who has ME/CFS or Long COVID with fewer social connections.
It will mean a lot to your friend if you can be adaptable and creative about how you connect with them, stay in touch and provide support.
Altering plans may allow your friend to be included. However, ME/CFS and Long COVID are unpredictable, and sometimes even when you change plans to try to include them, on the day, they may be feeling worse than they anticipated and need to cancel at late notice.
Talk to your friend about their energy limitations and how to help reduce the PEM they may experience. Remember, every person who lives with ME/CFS or Long COVID will have different limitations that can change, depending on the severity of their illness or how charged their battery is.
Tips to support your friend living with ME/CFS or Long COVID
Depending on the illness severity, your friend may need to:
- sit in a supported chair with their legs elevated
- use a walking stick, walking frame or wheelchair to get around
- have support to travel to and from places
- avoid certain foods
- ask that you don’t wear perfumes or scented deodorants
- avoid chemicals
- avoid environments that are too hot or too cold.
Your friend may prefer to:
- sit outside at a restaurant, rather than inside
- go to a quiet park, rather than sit in a crowded place or a coffee shop
- have visitors at home, rather than leave the house
- rest in bed with their feet elevated, rather than sitting upright at a table.
You may also like to ask your friend how long they can socialise before needing to rest. Remember, this may change each time you connect.
Your friend may need to be in a quiet or dim environment and want:
- music turned down
- noise cancelling headphones on
- to be away from lots of people talking (multiple conversations and noise take a lot of energy)
- to wear sunglasses (even when inside)
- To have blinds down, lights off or be away from direct sunlight.
Some people with ME/CFS or Long COVID are extremely unwell and bedbound. Maintaining connections can make an enormous difference but can also be difficult because they are limited in what they can do.
Ideas to consider include that:
- social media and other online platforms may create opportunities to include your friend or family, but for some, listening to people talk and watching a screen can be too exhausting
- a prerecorded message can be listened to in small portions and when your friend has the available energy
- you could send parcels, letters or cards to your friend in the post. Even if the person can’t read the messages themselves, someone can read them out, which lets them know they haven’t been forgotten
- emails or text messages are a way of keeping in touch with your friend
for people who are unable to communicate, a message of support can be passed through their carer or family member.
Important facts to remember
If you have a friend who is living with ME/CFS or Long COVID
- ME/CFS and Long COVID are not depression – a person may become depressed due to living with ME/CFS, but they are different conditions.
- People with ME/CFS or Long COVID are not just tired – fatigue is a symptom of many conditions, but people with ME/CFS experience lots of other symptoms, including problems with sleep, regulating their blood circulation and body temperature, weakness and pain.
- Exercise is not a cure for ME/CFS or Long COVID – people with ME/CFS have problems making energy at a cellular level, so they need to preserve their limited energy reserves to avoid triggering PEM.
- ME/CFS and Long COVID are fluctuating conditions – people living with
- ME/CFS will have good days and bad days. What they can do one day, they might not be able to do another day.
A short video to help you understand more about PEM
More detailed information about ME/CFS and Long COVID
To help educate friends and family, Inga (who lives with ME/CFS) has made a short, stop-motion animation.
‘I decided to make a film so there would be something more accessible that people could show their friends and family, to help communicate the complex aspects of living with this chronic illness.’
The film is called An Existence Project and the YouTube version of the film has subtitles in many different languages, including English, Chinese (Simplified), Dutch, Filipino, French, German, Greek, Korean, Norwegian, Spanish and Swedish.