Advice for caring for someone with ME / CFS

My relative and his wife both have ME / CFS and after a lengthy interaction with the local council they have finally been awarded a budget to get a Personal Assistant. We are so pleased with this and extremely grateful as it will vastly improve their quality of life (which is almost non-existent at the moment!). As they are unable to do so, I am helping to find a carer and will be taking care of the employment side of things.

My question goes to people caring for someone with severe ME / CFS and also for those with ME who receive care:

What should I include in the ‘job description’ and what should I be telling the carer before they start?

I have found some great information on the 25% ME Group website, but I would really appreciate any help and advice coming from personal experience.

Thank you so much in advance!


Firstly, welcome to the forum.

I don’t have personal experience from looking for a carer with someone with ME/CFS but I did look after my dad who had Alzheimer’s and my mum who has Parkinson’s and was disabled. What I found is that it is good to be very clear about their conditions upfront so that carers knew exactly what they were going to face. Give as much information as you can without overwhelming them so nothing is a surprise and you can match the best carer.

You might already be aware of Ivy Palmer - I understand that they might be able to help you:



Thank you so much Al, that’s really helpful. I didn’t know about that company so I will look into it.

I’m currently trying to put together a time sheet as they don’t have hours to cover full time but it will allow them to have someone to help prep meals etc nearly everday, I think it will be even harder to find someone that would want to do those hours! But you never know!

Most of my mum’s carers had school age children, so if you can plan so that the work is done during school hours, it shouldn’t be too difficult. Think about using a slow cooker or pressure cooker, to minimise the work involved in actual cooking.

These are really good suggestions thanks! I’m trying to negotiate a time table that would suit both them and potential carer(s) so this is great, thank you!

I had a car accident that nearly killed me in 2006. I couldn’t really walk, just hobble with a stick, until I had 2 knee replacements in 2009/2011. I had to make simply enormous changes to the way I managed everything.