I WAS appalled, yet not surprised at the lack of support and help the bedridden lady suffering with ME received.
As a sufferer myself I’ve received very little help and sometimes even scorn from the NHS regarding my illness.
One doctor told me it was ‘all in my head’ and I’d ‘get out of my house if it was on fire’. Another gave me a sick note for four weeks then said I’d need to look for a new job after that. This illness lasts years.
It is misunderstood by the public, employers and the NHS. It is very depressing not being able to do all the things you used to, giving a very poor quality of life. There is little funding for researching as it does not kill you, but it does ruin your life. Most people end up losing their job and their home and often their partner, leaving them with nothing.
The benefits system is designed to make you give up, even for people with lots of energy. The questions are aimed at particular types of illness/disability (you appear to need to have mental health issues or not be able to move at all to qualify) and are not relevant to this illness. My experience was exhausting and frustrating and all the help I got from volunteer agencies was advice not to fill in forms without expert help.
Not a straightforward process, especially for someone who is possibly bedridden with concentration problems.
I was assessed for my benefits by a nurse, who knew nothing about ME He also said he would not be making any assessment of my symptoms and that the information he noted would be passed to someone else to judge.
The illness is covered by the Disability Discrimination Act. However, this only states that employers have to make ‘reasonable’ adjustments. So all they have to say is ‘it’s not reasonable’ and do nothing.
I often wonder how all those who dismiss this illness and reject support to those who need it, would feel if they or a family member got it.
This isn’t the first time ME has featured in the news. There was the case of the young girls whose mother assisted her with suicide. As a sufferer I understand why.