Epilepsy ME (CFS) & DLA

Indie_Kid

KxMx wrote: »

Well I applied for DLA and got a letter back saying I was not at risk of falls. This despite having to write after I applied because i'd had another fall (all of which are on my medical records after A&E visits) which needed a visit to the local walk in centre.

But did you send the evidence in to state this?

I have a friend with severe ME and the DLA "advisor" said she would get better and recover if she started gentle exercise. That's the kind of thing ME sufferers are up against.

I have completely different issues but have been told similar things. Would love to know where these cures are? No medical people have found one yet. (they are working on treatment though)

TOBRUK

KxMx wrote: »

Well I applied for DLA and got a letter back saying I was not at risk of falls. This despite having to write after I applied because i'd had another fall (all of which are on my medical records after A&E visits) which needed a visit to the local walk in centre.

KxMx, I hope you have written to them to disagree with their decision and ask for a reconsideration! I recently did this (as you may have read on another thread) and they changed their decision and am now receiving HRM and HRC. Are you receiving any DLA at all?

I have a friend with severe ME and the DLA "advisor" said she would get better and recover if she started gentle exercise. That's the kind of thing ME sufferers are up against.

How irresponsible! Is this DLA "ADVISOR" a qualified doctor or ME specialist!! Gentle gradual increased exercise (under supervision) helps with some ME sufferers, however, I did this a few years ago but made me worse - there was a dramatic deterioration in my condition and it was stopped. I hope your friend did not take his advice!

johnwayne

Cotton_wool_katie wrote: »

Thanks for your replys.

Just in the process of appealing / going to tribunal with both ESA and DLA.

Admittedly i dont have ME as bad as a lot of people but it severly affects my day to day living.

On top of ME i have depression, maybe epilepsy?, vertigo. all of which makes every day difficult.

The benefits system is a joke - i would love to go to work and support my family but find even the day to day running of my home difficult.

Thanks again.

I have lupus and the exhaustion is dehabilitating 90% of the time so I can sympathise with the ME, Vertigo is awful in itself.

As you say you never would have made this choice for yourself and you didnt make the choice not to work.

Is your doctor supportive of your application. Have you discussed your care needs with them recently? If not it would definitely be worth doing.

Good luck with your appeals.

Invasion

KxMx wrote: »

Well I applied for DLA and got a letter back saying I was not at risk of falls. This despite having to write after I applied because i'd had another fall (all of which are on my medical records after A&E visits) which needed a visit to the local walk in centre.
I have a friend with severe ME and the DLA "advisor" said she would get better and recover if she started gentle exercise. That's the kind of thing ME sufferers are up against.

I'm well aware of what ME sufferers are up against, I've been at the receiving end of some horrific treatment. It's misinformation and misdiagosis where the problems lies for comments like that, people who have been diagnosed with ME who maybe have burn out or depression (with the criteria we use in this country it would be oh so easy to be diagnosed with ME when you have depression instead, despite the two illnesses being SO different) will react better to exercise than ME sufferers. Gentle exercise can be beneficial if you're at a level where you can handle that, I can sit on a gym ball for 2 minutes- just sit- or walk with crutches for 50 metres over the course of an hour or two, and I enjoy being able to do those things, but I'm not anywhere near recovery.

DLA contradicting what you've said is not just limited to ME, it happens with just about every illness/disability.