Chronic fatigue syndrome is a serious, debilitating illness which impacts every part of a person’s life, including their ability to work, socialise and take care of themselves. Symptoms are often invisible and unpredictable. Sadly, ME/CFS is frequently misunderstood and stigmatised, leaving suffers feeling isolated and lacking the support they desperately need.

On my Instagram stories I asked the Living with ME community to suggest ways their family and friends could help them. I have summarised their responses into nine simple tips.

If you are the friend or family member of someone with ME/CFS I want to thank you for taking the time to read this article – you are already doing tip number 8 on the list!

When you have limited energy doing basic household chores is difficult. What seems like a simple every day task to a healthy person can feel like a monumental challenge to someone with chronic fatigue syndrome.

Helping out with cooking, food shopping, cleaning, babysitting or taking your loved one to appointments can make the world of difference.

People with ME/CFS often don’t like asking for help with these tasks. Firstly, by asking for help we are admitting we can’t do it ourselves. This can be quite confronting as we are having to acknowledge our limitations and that we are losing our independence. Secondly, we feel it is rude. I know if my friend asks if there’s anything she can do to help I would feel very cheeky saying “yeah, can you come round and hoover my flat!”

If you are prepared to help your loved one with practical tasks specify exactly what you are willing to do. Even if they say no the first time reassure them that you are quite happy to clean their house or cook their dinner. In the past I have refused help when I actually needed it because I didn’t want to be an imposition. Reassure your loved one they are not a burden and you are very happy to help.

Many people with ME/CFS are housebound and those who are able to go out and socialise can’t do it to the extent they once did. Consequently we end up being socially isolated which can have a negative impact on our mental health.

Having a chat on the phone with your friend may not seem like much to a healthy person but when you’re housebound it is a big deal.

Many friendships are built around activities. Doing things together helps enhance the bond between you both. However when you become too ill to do these things friendships can dwindle.

One of the best ways to help someone with ME/CFS is to make an effort to stay in touch with them. If they cancel on you at the last minute or they are slow to reply to your messages don’t take it personally. The illness is unpredictable and no matter how much they want to socialise sometimes they just don’t have the energy. Try and be understanding of this.

One of the most irritating things about having a chronic illness is that people try and fix you. In my survey many respondents said they simply wanted their loved ones to listen to them. They didn’t want solutions or medical advice. They wanted their family to listen to them and acknowledge what they were going through without trying to fix them.

Try sitting with your loved one and offering a comforting ear. Acknowledge how difficult life is for them. Provide them with support without suggesting solutions. 

Think of it like when you have had a bad day at work. You come home and have a rant about how bad your day was or what an idiot your boss is. You’re not looking for your family to give advice, you just want a sympathetic ear and an opportunity to let out your frustration.

The most surprising result from my survey was how many people simply wanted to be believed.

There is a lot of stigma around ME/CFS. It can be hard to make doctors believe we are sick. Having these doubts from our family and friends as well is very difficult to deal with.

With ME/CFS you often look well but feel horrendous on the inside. This can lead to family or friends questioning a person’s illness. How can she be that tired? Surely he’s not in that much pain? The reality is our symptoms are often much worse than we are letting on. In my survey 94% of people said they hide the severity of their illness!

Validating your loved ones experience and acknowledging how difficult their life is can really help someone with ME/CFS feel understood and supported.

Developing ME/CFS turns your life upside down. You can’t do the things you used to do. You often have to give up work. You are forced to stop the sporting activities you loved. Losing such big parts of your life can make you feel as though you’ve lost your identity. Consequently some people develop low self-esteem or self confidence. 

I always assumed people saw me as weak or as a failure. When one of my friends said she had so much respect for me I was gobsmacked. She explained she was in awe of how I dealt with such a debilitating illness.

In the survey several people said they wanted to be validated or have family members reassure them of their worth.

If you are looking for ways to comfort someone with ME/CFS tell them how much you love and respect them. Express how proud you are of the way they are handling the situation. Reassure them that even though they can’t do what they used to be able to you will always be there for them. They are enough just how they are.

Loosing your independence can have a negative impact on your self worth. People with ME/CFS have lost so much of their independence already it is important to allow them to do the tasks they wish to do and allow them to make their own decisions about how to manage their health and medical treatment. Sometimes family try and help by taking control. Whilst this is likely done with the best intentions it will often be met with frustration on the part of the person with ME/CFS. 

There is a running joke in my family about my mum being a smothering mother. While it’s very kind of her to do everything for me I want to do some things for myself. Having a sense of achievement after accomplishing a task is very satisfying. Doing things for yourself, however small, stops you feeling helpless or useless. 

Obviously there is a balance to be found. People with chronic fatigue syndrome typically need some element of support. It’s up to the carer and the patient to speak openly with each other about what support the patient wants and needs.

Who doesn’t love receiving a letter. Not a bill. Not a circular. A real handwritten letter! It doesn’t have to be long, it could even be a postcard. The excitement of receiving something unexpected will really brighten up your loved ones day. If you’re feeling really generous why not send them a small gift.

There is a charity in the UK called Smile For ME. You can nominate someone with chronic fatigue syndrome to receive a surprise gift. You tell the charity a bit about your loved one and they will buy some gifts specially for them, package them up all pretty and post them to your friend.

Respondents to the survey shared how they wished their family and friends would educate themselves on chronic fatigue syndrome, particularly on the need for pacing and the reality of having low energy levels.

Society teaches us to push through, grit your teeth and persevere with whatever is causing you difficulty. This is the exact opposite of what people with ME/CFS should be doing. Overexertion worsens their symptoms.

If friends and family understand this it can help them understand why the person with chronic fatigue syndrome has to restrict their activity. Friends and family can even play a part in helping their loved one pace. For example, if you know your friend only has the energy to chat for 30 minutes when it is close to that time say to them “Are you tired? Shall we stop talking now?“ Often us ill people are so eager for any social activity we can easily overexert ourselves without meaning to.

Spend some time online doing research. This guide from ME Action and this one from Solve CFS are a good place to start.

The best way to know how to help someone with chronic fatigue is to ask them. While the suggestions I’ve given above are applicable to most people with ME/CFS everyone is different. People may also want different types of support at different stages of their illness.

Hopefully this article has give you some ideas on how to help someone with ME/CFS. Every person’s experience of this illness is different but taking the time to listen to your loved one, showing them some compassion and recognising how challenging their life is will go along way to making them feel supported and understood.

For more advice and guidance on being a carer check out this guide from Action for ME or this one from from the ME Association