I am reposting this story of Wendy ( qouoted from Action for M.E Website)
“I have had M.E. for more than 10 years. It took me so long to get a formal diagnosis that I lost my job as a university finance officer – they made me leave on incapability grounds.
“I have pretty much been left to fend for myself by the medical profession. I receive Incapacity Benefit but both my applications for Disability Living Allowance have been turned down. The stress of applying means I am not going to try again.
“Having been ill for so long means that people expect me to be well by now and sometimes they are impatient with me. I have no social life at all and though my family is supportive I think they must get very frustrated. I feel huge guilt that I can’t help care for my elderly mum and mother-in-law.
Both my daughters have M.E. More research is needed into the cause of the illness and any possible genetic links. I’m just waiting for light at the end of the tunnel.”
This is an example of what can happen with a fluctuating illnesss such as M.E, people often find that that the DWP don’t seem to get the fluctuating part, i.e better one way and can’t get out of bed the next day. This can lead to financial burden for families, carers and loved ones.