severe M.E and esa

hi everyone

i care for my wife who has severe M.E

Well we had a letter saying that income support was being changed to esa, got the phone call, although my wife didnt speak as she finds it difficult,

now we have the dreaded ESA form to complete, and to say my wife is bricking it is an understatement.

I will be filling out the form for my wife and she will sign it,

to say i find the form confusing is an understatement, but onwards and upwards

will be following your guides

will keep you updated, and any advice welcome

all the best to everyone

Hi, MB,

I suffer from ME/CFS as well, and I know of an excellent website run by and for ME sufferers and their carers and family, called Foggy Friends:

www.foggyfriends.org/

There are sections on all sorts to do with ME, from benefits to research, and a section for carers.

Everyone is lovely and it helps ease the myriad difficulties and stresses of having this illness to find other people in your boat.

Good luck

thank you gordon and hardyards
very much appreciated

10 years ago I had to fight them over severe ME, when I claimed DLA. In the end we had to go all the way to the SS commissioner. What he said to the Tribunal service was (to paraphrase):

"You say you believe in the reported symptoms. Therefore you can only withhold the benefit if you do not believe the diagnosis of ME."

This was because then (and things have not changed as much as we would like) many panel members thought of ME as hypochondria at best and malingering at worst.

I was able - just about at the last minute - to get an ME diagnosis from a consultant (in my case a rheumatologist). Previously the diagnosis had been by an international expert in ME, who was also a local GP - and so not high enough in the medical pecking order to impress a Tribunal.

The re-convened Tribunal found in my favour without any further hearing.

So, the key issues must be:

1) As Gordon and everyone else says here - make sure that you can match symptoms to descriptors.

2) (And this is my suggestion) Make sure that you have a clear diagnosis of ME - preferably by someone other than your GP. A consultant is the best bet.

A personal opinion:

Some bits of an ME sufferer's life are easier to describe than others. Why not start with those - take a look at how your wife manages "mobilising", for instance. This is a common problem with ME, and you can probably manage to work out how far she can walk (or push herself in a wheelchair) without too much stress.

Things you only do once a day (like dressing) can also be more easily tackled.

You can get these relatively straightforward bits done first, and then tackle some of the horrid (or difficult) bits - like getting to the loo - when you've got the experience of fitting your life into the form from the "easy" bits.

But good luck with describing "Brain Fog" - that one's a real pain. Maybe others on the specialist forum can help with that.

Remember - there are lots and lots of other varying and complicated conditions. You're nearly as alone with this problem as it can seem.

Good luck.

carruthers wrote:

10 years ago I had to fight them over severe ME, when I claimed DLA. In the end we had to go all the way to the SS commissioner. What he said to the Tribunal service was (to paraphrase):

"You say you believe in the reported symptoms. Therefore you can only withhold the benefit if you do not believe the diagnosis of ME."

This was because then (and things have not changed as much as we would like) many panel members thought of ME as hypochondria at best and malingering at worst.

I was able - just about at the last minute - to get an ME diagnosis from a consultant (in my case a rheumatologist). Previously the diagnosis had been by an international expert in ME, who was also a local GP - and so not high enough in the medical pecking order to impress a Tribunal.

The re-convened Tribunal found in my favour without any further hearing.

So, the key issues must be:

1) As Gordon and everyone else says here - make sure that you can match symptoms to descriptors.

2) (And this is my suggestion) Make sure that you have a clear diagnosis of ME - preferably by someone other than your GP. A consultant is the best bet.

A personal opinion:

Some bits of an ME sufferer's life are easier to describe than others. Why not start with those - take a look at how your wife manages "mobilising", for instance. This is a common problem with ME, and you can probably manage to work out how far she can walk (or push herself in a wheelchair) without too much stress.

Things you only do once a day (like dressing) can also be more easily tackled.

You can get these relatively straightforward bits done first, and then tackle some of the horrid (or difficult) bits - like getting to the loo - when you've got the experience of fitting your life into the form from the "easy" bits.

But good luck with describing "Brain Fog" - that one's a real pain. Maybe others on the specialist forum can help with that.

Remember - there are lots and lots of other varying and complicated conditions. You're nearly as alone with this problem as it can seem.

Good luck.

thankyou carruthers
sorry not replied before now, but just finished filling in the form and sent it in today, your reply was very helpful much appreciated

just got to wait now see what happens