A Personal Story-Sheila
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
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
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
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
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
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
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
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
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
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
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
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
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.