9. Support For Someone With ME

In my last couple of videos, I’ve suggested some things that friends and family can do to help someone with ME. It’s also worth making the most of any other support you can find too.


As I said before, do make sure you’ve got a sympathetic doctor, who does actually believe in your ME as a real illness - preferably your GP AND a specialist ME consultant. They won’t be able to offer you a cure, but they should be able to support you and point you in the right direction for any help you need, they should be happy to write letters to employers or schools or benefits agencies, explaining how the illness affects you... and they should be keen to listen to you and work with you on any realistic treatments that could help you, even if it’s just trying to cope with some of the worst symptoms. If you haven’t got a doctor like that, then seriously keep changing until you find one who is.

It’s also really good to get referred to a physiotherapist or occupational therapist - one who’s got real experience of helping people with ME. They definitely shouldn’t be forcing you to try to do more activity than you’re able to do, but they should be able to help you with things like managing the illness, and making the most of the very limited energy you’ve got, with things like pacing, as well as any practical changes in your life or daily routines - ME can often mean some pretty big adjustments, especially early on, so it’s good to have that support and advice if you can.

A lot of people with all sorts of severe long-term illnesses also find it does help to see someone like a counsellor or a community support nurse. ME does NOT get cured by counselling or anything like that. And it’s NOT a sign of weakness to seek some form of emotional support. People with ME are so often people who have pushed themselves to be strong and keep on going, when others might have stopped a long time ago. The effects of being so ill with ME can be so devastating, in so many ways, that having someone outside of your close family and friends just to talk through it all with, can actually be a really positive thing.

And it’s not just the person who’s got the ME who needs to make sure they’ve got all the support they need, but their family and anyone who’s closely involved with caring for them need to look after themselves as well. They must be able to talk to their GP and get any extra help they need, or contact charities and organisations that are there specially to help carers.

When it comes to claiming benefits, or getting social care in the home, if you are severely ill, then sadly, people with ME are often at the bottom of the list, for getting the support they need and are entitled to. You can sometimes expect to feel like you’re getting treated pretty badly in medicals and interviews, or that people don’t believe you, and you might have to go through several appeals. All the sort of stress you really don’t need when you haven’t got the energy to waste on going through all that. So before you even look at your first application form to fill it in, it really is worth getting the best advice from your local Citizens’ Advice Bureau or Disability Advice organisation. Other people locally with ME and other chronic illnesses who have been through it before, will be able to recommend who you should speak to. They’ll probably have specialist volunteers who have got a pretty good idea of what help and benefits you should be offered and are entitled to - and what you’re not - and they should be able to make the whole process of applying a lot easier. They can fill in forms with you, and they’ll know how best to explain things so that the people reading the forms can hopefully understand more your illness and your needs. In the same way, children and young people could need a lot of extra support at school, or sometimes even home tutoring, if they’re not well enough to go in full time. The TYMES Trust (The Young ME Sufferers Trust) - www.tymestrust.org - can offer help and advice about that.

There are several charities and other groups supporting people with ME, - with advice, information leaflets and magazines. Some of them have helplines you can call for advice, or if you’re having a bad day - and some try and help funding for research into the illness. I’d recommend getting the support that’s available, and I’ve found the ME Association www.meassociation.org.uk has got a lot of very useful and pretty balanced stuff, especially when you’re newly diagnosed.

There are absolutely loads of websites, about ME, and blogs and forums. I’ve listed quite a few on the links page and I hope to say a bit more about some of them, and hopefully make some recommendations, later on. But you will soon start to find that there can be some quite different opinions on things like what causes ME, and how some people have said they’ve got better from it, and other people suggesting that no one can get better from it yet until medical research has found a cure. Personally I find there’s quite a lot of truth - or at least interesting ideas - in what most people have to say actually - but I think it’s good to balance things against each other. But there are also people who make unbelievable claims too - so, beware any so-called “miracle cures” - there really aren’t any. Believe me, if there were, I’d be shouting about them, for free!

There are several books too. I’ll hopefully be looking at some of them in other videos, but for now, if there’s one book I’d recommend for anyone who has severe ME and who needs a lot of practical care, then “Severe ME - a guide to living” by Emily Collingridge is very helpful and comprehensive, and has got a huge amount of information, including where else to look for help. It’s really good value, and you can get it from severeME.info

The other thing that can help, is that there are independent local support groups across the country, for people with ME and chronic fatigue, or ones more generally for long-term disabling illnesses. These can be something to look forward to as a great way of meeting new friends who understand what you’re going through, because they’re going through similar things. And everyone can share their experiences about how they deal with particular problems or find new ways of doing things. There can just sometimes be a feeling that people might be going on about how ill they are, or like other people are dragging you down a bit - especially if that’s the only group of people you’re meeting regularly, only other people who have got ME too. But in a well run group, it’s good to encourage each other to keep staying hopeful, as well as sharing through the tough stuff... not being defined by the ME, but being there to support each other.