ME sufferer
Carly - by Sheila Barry

Age: 27

Diagnosed: 1997

A Personal Story-Sheila Barry

The first thing I would like to say is that I am not accustomed to public speaking. I have never spoken at such an event as this.

You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family. So why have I travelled down from York to speak at this book launch. I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers.
Skewed clearly outlines the reasons why many of those suffering from ME feel alone, isolated and have little hope for the future.

I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions.
Psychiatrists classify a condition when a number of them are able to agree a
criteria. They have no diagnostic tests. It is simply a matter of

At present there are no diagnostic tests for ME and psychiatrists are determined to have it classified as a mental illness. They have no tests - it is simply their opinion. ME sufferers, and especially their carers, as the sufferers are too ill, must ensure that this does not happen.

I recently attended a meeting of Advisory committee on Pesticides concerning the alternatives to pesticides - Chairman said it would be too expensive.

How long will it be before it is realised that the continued use of pesticides is having a detrimental effect on the lives of so many . It is said that cheaper food is produced but at what cost. How much longer will the dangers of the chemicals to which we are all constantly exposed , be covered up by those who have a financial interest in the matter.
There has been consultation on crop spraying close to houses and schools and I discovered that it is the local councils who are among the worst offenders on the use of pesticides. They are used in parks and schools, so young children are constantly being exposed to the dangers. There is an increase in so many illnesses in children which would appear to many, to relate to chemical exposure.

In his book, Martin highlights how the govt, industry and the insurance industry are doing everything possible to deny any connection. The Govt. cannot afford to admit it - to do so would result in untold claims for compensation. But after Mad cow Disease and the foot and mouth crisis - does anyone now believe anything that the Government says on this matter?

What has driven me to attend this book launch

My daughter, had been an ME sufferer for more than 10 years. She died, by her own choice , on her 27th birthday. She walked out of her flat in the middle of the night, it was the first time she had been out alone for years.
She took an overdose. It was 9 days before her body was found by her partner 250 yards from her flat and 25 feet from the place the police had parked their cars when they had said that they were carrying out a through search for her. They have since been forced to admit that they did not search that area. They were alerted 2 and a half hours after she left the flat and took the overdose, so there is every possibility that she would be alive today if they had acted in a more efficient manner.

It was nearly 3 years ago and we still await the inquest. I must say that in some way I felt a sense of relief. She was no longer suffering and in constant pain. Any parent will know how difficult it is to see a child in so much pain and to be unable to do anything to help.

In fact, shortly before she chose to die, her ME was much better. She was able to get to the toilet unaided and even move around the flat for no reason other than for the joy of being able to move and do what, we able bodied people, take for granted.

She was considerably better but in no way well enough to return to work.
She had in the past experienced major problems with the Benefits Agency and had been treated in such a horrendous manner she had said that she would
never be able to apply for benefits again. Applying for benefits for an
invisible illness, with no diagnostic test is hell. The result largely depends on the beliefs of the doctor sent to examine you.

It makes planning your life impossible. My daughter needed her benefits to maintain her flat and her independence.
Her first application for DLA was turned down; the second resulted in Mobility at High rate and care at lower;
the next application was completely rejected. She was for most of the
bed bound, unable to sit herself up and totally dependent on her partner.
Meanwhile he was being hounded by the Benefits Agency to return to work.
It took 18 months to get to Tribunal during which time she had to live with the thought that if her benefits were not reinstated, she would no longer be
able to maintain her flat. She was too ill to attend the Tribunal .She
did however, receive the Care element of DLA for 3 years which meant that her partner, on whom she depended, was no longer hounded by the Benefits Agency.
But she was not awarded Mobility, as the doctor believed her condition was 'all in her mind'. She was too ill to take the matter further and to do so
could have resulted in the Care element being withdrawn. So she had a
couple of years free from the constant stress of filling in forms for an illness with ever changing symptoms As the time got closer for her to re-apply she was adamant that she could
never face the stress again. Her action meant that she never had to.

I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life.

Shortly after her death, I was told that she was the third ME sufferer in
our area who had taken similar action. There seemed to be little
information on this subject that many people prefer to ignore. I decided to attempt to set up a register of those ME sufferers in UK who had ended their life I also requested information from any sufferers who had felt suicidal.
The response, I am sorry to say was overwhelming. I was contacted by so many people who felt that they did not want to live for another 2 or 3 decades with such a terrible illness, and with no hope of a cure. The reading was harrowing.
They talk of the isolation, the lack of understanding by the medical profession and the difficulty of applying for benefits. Those too severely affected to be able to leave their homes are left with no support and no treatment.
.I would like to read a few extracts from the m ails I received

Extracts from register read at this point

These people are in a state of despair. I do not believe that they are depressed - they are simply taking a realistic approach to their situation

ME sufferers and their carers must take whatever action is necessary to ensure that money is made available for research into the physical cause of this illness and for a diagnostic test to be made available.

I feel that only a mad man would say that the illness so many thousands over the world are suffering - with similar symptoms is 'all in the mind'...but then I have read that 'most psychiatrists are mad'.. And having in fact worked for one in the past - I do believe that there's a lot of truth in that statement

If in some small way my daughter's death has made a difference - I will not feel that she has died in vain

Thanks to Martin for producing this book.