The guy on bots, billy king, said he had me, what is ME?
Chronic Fatigue Syndrome, it often comes on after a viral illness such as flu. There are a lot of different symptoms but the over-riding one is feeling completely exhausted. Not just tired but exhausted to the point of not being able to function.
Most people who have it have good days and bad days and never really know how they are going to feel from one day to the other.
It is very hard for anyone with it to make a lot of arrangements because even something simple like a lunch or shopping trip can seem like climbing Everest when they are having an attack.
Chronic Fatigue Syndrome, it often comes on after a viral illness such as flu. There are a lot of different symptoms but the over-riding one is feeling completely exhausted. Not just tired but exhausted to the point of not being able to function.
Most people who have it have good days and bad days and never really know how they are going to feel from one day to the other.
It is very hard for anyone with it to make a lot of arrangements because even something simple like a lunch or shopping trip can seem like climbing Everest when they are having an attack.
So do sufferers get DLA then ? surely they do, it's not like you could work with a disorder like that.
So do sufferers get DLA then ? surely they do, it's not like you could work with a disorder like that.
Some perhaps, but I believe that many are being challenged because it is such a difficult thing to prove. If ATOS came on a 'good' day then it would seem like there was nothing wrong with them.
I know a couple of people who have it and they are both self-employed but it really restricts what they are able to do, but being able to choose their hours and work when they are OK and not when they aren't suits them.
So do sufferers get DLA then ? surely they do, it's not like you could work with a disorder like that.
Hi, I have it and certainly don't get DLA. Basically if you can press a button, you are considered fit enough to work! It's an awful illness because you look so normal on the outside yet feel so ill most of the time.
Chronic Fatigue Syndrome, it often comes on after a viral illness such as flu. There are a lot of different symptoms but the over-riding one is feeling completely exhausted. Not just tired but exhausted to the point of not being able to function.
Most people who have it have good days and bad days and never really know how they are going to feel from one day to the other.
It is very hard for anyone with it to make a lot of arrangements because even something simple like a lunch or shopping trip can seem like climbing Everest when they are having an attack.
Hi Teddybear, it seems like you understand the illness very well, do you know somebody who has it?
Chronic Fatigue Syndrome, it often comes on after a viral illness such as flu. There are a lot of different symptoms but the over-riding one is feeling completely exhausted. Not just tired but exhausted to the point of not being able to function.
Most people who have it have good days and bad days and never really know how they are going to feel from one day to the other.
It is very hard for anyone with it to make a lot of arrangements because even something simple like a lunch or shopping trip can seem like climbing Everest when they are having an attack.
Cfs is cfs. ME is ME.
OP, if you want to know, read up from the 25% group - they're the severely affected. Forget the ME Association and the cfs bull****.
I have ME and every day is a f'ing nightmare. I no longer work, I don't have a life and have to lurk on forums like this because most of the time, I can't string a sentance together.
OP, if you want to know, read up from the 25% group - they're the severely affected. Forget the ME Association and the cfs bull****.
I have ME and every day is a f'ing nightmare. I no longer work, I don't have a life and have to lurk on forums like this because most of the time, I can't string a sentance together.
Hi, I have it and certainly don't get DLA. Basically if you can press a button, you are considered fit enough to work! It's an awful illness because you look so normal on the outside yet feel so ill most of the time.
I'm so sorry to hear that. If I wrote what I thought of that scum Iain Duncan Smith, I'd definitely get banned. The way they're treating disabled people at the DWP/ATOS is appalling. However, you can receive DLA (or PIP as it is now) whether or not you're working; it's not an out-of-work benefit.
I'm so sorry to hear that. If I wrote what I thought of that scum Iain Duncan Smith, I'd definitely get banned. The way they're treating disabled people at the DWP/ATOS is appalling. However, you can receive DLA (or PIP as it is now) whether or not you're working; it's not an out-of-work benefit.
If you have been for an ESA 'medical' and been found fit for work, you wont get DLA. They say the 'medicals' dont affect DLA decisions, but they do
If you have been for an ESA 'medical' and been found fit for work, you wont get DLA. They say the 'medicals' dont affect DLA decisions, but they do
Yes, this is true. I'm currently fighting the Atos decision but don't hold out much hope. It's amazing how even though my own doctor is signing me off continuously because I am so ill, Atos still maintain I am fit. I only wish I was fit because working would be easy compared to how my life is and feeling so ill.
I'm so sorry to hear that. If I wrote what I thought of that scum Iain Duncan Smith, I'd definitely get banned. The way they're treating disabled people at the DWP/ATOS is appalling. However, you can receive DLA (or PIP as it is now) whether or not you're working; it's not an out-of-work benefit.
I agree regarding IDS and the Tories in general. Hardly anyone can claim DLA/PIP in reality, there isn't even Incapacity Benefit any more. My family help me but I don't know how some are surviving, I really don't! :mad::(
I have Fibromyalgia and the symptoms are very similar to ME But I also have Spondylosis so double the pain.
I get DLA though I did have my Incapacity Benefit taken off me a few years back as someone in the office disagreed with the Doctor who examined to me to see if I was still entitled to it.
I appealed of course and won.
But I had a letter today to say I have to be re assessed for Incapacity due to changes in the Benefit system.
ME was given an awful name in the 80s when people first started being diagnosed..people refered to it as yuppie flu ( somehow thinking it was in ones head and a fictional disability ).
Ive been a welfare rights advisor and it was possible for people to claim DLA for ME but often it had to be fought over at appeal.
Now PIP is being phased in to replace DLA and PIP is extremely difficult to get,you have to claim so many points to be eligible and the rules are going to mean people who rely on mobility to get to work will end up being housebound because their previous entitlement was if they could walk less than 50mtrs in a safe and normal manner..now its changed to 20metres even if you have to use an aid to get there ( stick/chair etc )
ME sufferers should be entitled to ESA if they are struggling to get PIP.
Unfortunately this govt think that if you have a few good days then your fit for work,they take pride in demonising people with disabilities as scroungers.
Anyone diagnosed with ME should get a letter from your GP explaining why it restricts your work capability.
I have m.e. and used to claim DLA. I couldnt cope with any more ATOS medicals so stopped claiming.......
Sorry to hear that, it's what is happening to many, myself included! I don't have the means of getting to the CAB and find it impossible to put together my case by myself. Hope you have a support network around you.
ME was given an awful name in the 80s when people first started being diagnosed..people refered to it as yuppie flu ( somehow thinking it was in ones head and a fictional disability ).
Ive been a welfare rights advisor and it was possible for people to claim DLA for ME but often it had to be fought over at appeal.
Now PIP is being phased in to replace DLA and PIP is extremely difficult to get,you have to claim so many points to be eligible and the rules are going to mean people who rely on mobility to get to work will end up being housebound because their previous entitlement was if they could walk less than 50mtrs in a safe and normal manner..now its changed to 20metres even if you have to use an aid to get there ( stick/chair etc )
ME sufferers should be entitled to ESA if they are struggling to get PIP.
Unfortunately this govt think that if you have a few good days then your fit for work,they take pride in demonising people with disabilities as scroungers.
Anyone diagnosed with ME should get a letter from your GP explaining why it restricts your work capability.
Thanks for your insight on this. My GP has basically told me though that it will not make any difference, the Govt are determined to stop everyone's benefit regardless of their disability/illness.
You're right, this Govt take delight in labelling anyone with an illness or disability as scroungers but they really haven't a clue. I wish IDS would come and get an insight into my life for a week because he'd realise just what a miserable existence it is being ill all the time and having to fight the system. The irony is, fighting the illness makes my symptoms much worse and I'm less able to do anything for myself let alone work. Pfffft! Sorry for the whinge!
I have Fibromyalgia and the symptoms are very similar to ME But I also have Spondylosis so double the pain.
I get DLA though I did have my Incapacity Benefit taken off me a few years back as someone in the office disagreed with the Doctor who examined to me to see if I was still entitled to it.
I appealed of course and won.
But I had a letter today to say I have to be re assessed for Incapacity due to changes in the Benefit system.
Hi Rosie, I feel for you! I hope you get on ok - Atos have a lot to answer for! They spend about 40 minutes assessing you and ignore everything you say. It should be your own doctor who assesses you and not someone who's been told to find you fit no matter what.
Tombo60
Posts: 1,271
Comments
Chronic Fatigue Syndrome, it often comes on after a viral illness such as flu. There are a lot of different symptoms but the over-riding one is feeling completely exhausted. Not just tired but exhausted to the point of not being able to function.
Most people who have it have good days and bad days and never really know how they are going to feel from one day to the other.
It is very hard for anyone with it to make a lot of arrangements because even something simple like a lunch or shopping trip can seem like climbing Everest when they are having an attack.
So do sufferers get DLA then ? surely they do, it's not like you could work with a disorder like that.
http://www.youtube.com/watch?v=Wea8ZQ0II4g&hd=1
Some perhaps, but I believe that many are being challenged because it is such a difficult thing to prove. If ATOS came on a 'good' day then it would seem like there was nothing wrong with them.
I know a couple of people who have it and they are both self-employed but it really restricts what they are able to do, but being able to choose their hours and work when they are OK and not when they aren't suits them.
Hi, I have it and certainly don't get DLA. Basically if you can press a button, you are considered fit enough to work! It's an awful illness because you look so normal on the outside yet feel so ill most of the time.
It was known as yuppie flu
Hi Teddybear, it seems like you understand the illness very well, do you know somebody who has it?
Cfs is cfs. ME is ME.
OP, if you want to know, read up from the 25% group - they're the severely affected. Forget the ME Association and the cfs bull****.
I have ME and every day is a f'ing nightmare. I no longer work, I don't have a life and have to lurk on forums like this because most of the time, I can't string a sentance together.
http://www.25megroup.org/home.html
... btw, having a bad day today.
Hi, me too!
I'm so sorry to hear that. If I wrote what I thought of that scum Iain Duncan Smith, I'd definitely get banned. The way they're treating disabled people at the DWP/ATOS is appalling. However, you can receive DLA (or PIP as it is now) whether or not you're working; it's not an out-of-work benefit.
If you have been for an ESA 'medical' and been found fit for work, you wont get DLA. They say the 'medicals' dont affect DLA decisions, but they do
Yes, this is true. I'm currently fighting the Atos decision but don't hold out much hope. It's amazing how even though my own doctor is signing me off continuously because I am so ill, Atos still maintain I am fit. I only wish I was fit because working would be easy compared to how my life is and feeling so ill.
yeah, thanks for the reminder.
and stomach cancer is a tummy ache...
That's the gutter press for you.
I agree regarding IDS and the Tories in general. Hardly anyone can claim DLA/PIP in reality, there isn't even Incapacity Benefit any more. My family help me but I don't know how some are surviving, I really don't! :mad::(
I get DLA though I did have my Incapacity Benefit taken off me a few years back as someone in the office disagreed with the Doctor who examined to me to see if I was still entitled to it.
I appealed of course and won.
But I had a letter today to say I have to be re assessed for Incapacity due to changes in the Benefit system.
Ive been a welfare rights advisor and it was possible for people to claim DLA for ME but often it had to be fought over at appeal.
Now PIP is being phased in to replace DLA and PIP is extremely difficult to get,you have to claim so many points to be eligible and the rules are going to mean people who rely on mobility to get to work will end up being housebound because their previous entitlement was if they could walk less than 50mtrs in a safe and normal manner..now its changed to 20metres even if you have to use an aid to get there ( stick/chair etc )
ME sufferers should be entitled to ESA if they are struggling to get PIP.
Unfortunately this govt think that if you have a few good days then your fit for work,they take pride in demonising people with disabilities as scroungers.
Anyone diagnosed with ME should get a letter from your GP explaining why it restricts your work capability.
Sorry to hear that, it's what is happening to many, myself included! I don't have the means of getting to the CAB and find it impossible to put together my case by myself. Hope you have a support network around you.
hi dw. Sorry to hear that.
Hope things suck less tomorrow for you.
Virtual hug for all the MEers and FMers on DS. And one for the CFSers too.
Thanks for your insight on this. My GP has basically told me though that it will not make any difference, the Govt are determined to stop everyone's benefit regardless of their disability/illness.
You're right, this Govt take delight in labelling anyone with an illness or disability as scroungers but they really haven't a clue. I wish IDS would come and get an insight into my life for a week because he'd realise just what a miserable existence it is being ill all the time and having to fight the system. The irony is, fighting the illness makes my symptoms much worse and I'm less able to do anything for myself let alone work. Pfffft! Sorry for the whinge!
x2
___
Aww thanks and same to you. Virtual hugs all round.
Hi Rosie, I feel for you! I hope you get on ok - Atos have a lot to answer for! They spend about 40 minutes assessing you and ignore everything you say. It should be your own doctor who assesses you and not someone who's been told to find you fit no matter what.
It makes me so cross - it's very unfair. :mad: