Are you new to ME?


If you find that you need to apply for benefits or housing assistance, whatever you do, make sure that you have someone to help you who knows about ME and the application system.

Here is a simple example why. An early question on one of the many forms used to say "Can you walk 100 metres without severe discomfort or pain?" For me the answer is a simple yes. But the form hadn't been written with ME in mind. What the question wanted to know is whether you were able to take a job which would require you to walk 100m several times each day as part of the normal activities, and to do that regularly and reliably every day that you work without it causing you difficulties, or it meaning that you have to rest for a couple of days afterwards. I couldn't do that: I would need a lot of rest. They have tried to rephrase many of the questions, but whether you are filling in a form or at an interview, whenever you are asked if you can do something, you must comment if you cannot do it repeatedly and regularly throughout the day.

Fortunately the associations are very helpful: you will get lots of advice on the forums if you ask, and the Citizens Advice Bureaus are very good: some of them even provide home visits for people who are unable to get there. There are many other voluntary organisations that can help - this is where knowing others with ME will help. Ask them for the current situation.The M.E. Association have a helpful summary.

I'm afraid there is an element of luck with these things, and the whole thing revolves around "ticking the right boxes". So get help the first time around to make sure that your applications are filled in the right way. There needs to be someone with you who can take in all your information and tell them what is relevant in the format they require. If you are like me, your mind gets confused after a while, so forget about your pride and independence, get it right the first time and hopefully avoid the unpleasant prospect of an appeal.


But if you are unfortunate, remember that around half of those decisions are overturned at appeal.