Action for ME employment survey

From   Action for ME (AfME)
    
"Nearly everyone knows someone who has ME. They may even know someone who is
so badly affected that they have lost their job and have to live on
benefits. Believe me, for these sufferers this is not a career choice.  Without exception, people with ME are desperate to get well and live normal lives.

The benefits shake-up recently proposed by the government has serious and
far-reaching implications for vulnerable people such as those affected by
this chronic  fluctuating illness.

It promises fairness for disabled people in what is a barely disguised
attempt to cut the benefits bill by forcing people back to work before they
are well enough. What next - will we be expected to send our old and sick to
the workhouse?

Action for ME is urging everyone with ME and their carers to take part in
the public consultation on the proposals by completing the survey on our
website   www.afme.org.uk

The survey asks important questions about people's health, their
experiences of the existing benefits system, their hopes and the strategies
they have used to try to get back to work.

We will use the results to lobby Government. The Prime Minister must not be
allowed to reduce his benefits Bill at the cost of ruining the health of
genuine claimants.


Peter Spencer
Chief executive
Action for ME"
www.afme.org.uk


* * *

On the last page of the survey it asks where in the UK you live, but I was able to submit my results without answering that question, since I don't live in the UK, so don't abandon the survey when you get to that point!

The experts say that a CFS patient should not try to go back to work until he/she is at least 80% recovered, and then only part-time.

Some of us were still trying desperately to work when we were only 10% functional.  It's a terrible insult to be accused of goofing off to collect disability benefits after trying so hard to remain employed!

I don't know what the benefit amounts are in the UK, but here in the US, even the top SSDI benefits are about as much as a minimum wage paycheck.  If your marriage went down the tubes as your health failed and you're trying to make it on your own, you can't.  When I first got sick in 1987, one of my colleagues had just returned from maternity leave: her disability check for that time period was exactly equal to my rent, nothing left over for food/utilities/transportation/prescriptions.  And mine was not a luxury apartment: it was 1 bedroom, no pool, no patio, no A/C, no dishwasher, the only amenity was on-site laundry room.

Anyone who thinks that people go on disability for kicks is sick in the head.  A friend who was a RN gets just $648 a month.  You try living on that!