Sophia Mirza's Inquest

FROM THE 25% ME GROUP

(Permission to repost/re-use)

Many people will no doubt be aware that the 25% ME Group was one of the main
charities to call for the cancellation of the PACE/FINE trials from the very
onset.


The 25% ME Group remains the only ME charity specifically supporting
severely affected sufferers of ME (ICD10: G93.3).  As such, we represent the
interests of severely ill ME patients, many of whom are so ill that they are
totally bedridden, some of whom are wholly dependent on carers for the basic
functions of daily living and others who are lucky enough to be able to
leave home in a wheelchair occasionally!

In addition to calling for the cancellation of the PACE trials, we also
called for the suspension of the FINE trials aimed directly at our client
group (ie, the severely affected) using techniques wholly inappropriate to
the house and bed bound sufferer.

This would also apply to any future funding into such trials!

Some members of the medical profession, especially those within the field of
psychiatry, have consistently maintained that ME (Myalgic Encephalomyelitis)
is not a neurological condition in spite of the fact that for almost fifty
years it has been consistently reported to be a neurological condition.
Well-respected medical professionals including Dr Richardson, Dr Ramsay, Dr
Aitchinson, Dr Dowsett, along with many others, reported findings confirming
this fact. As we all know, the World Health Organisation has also classified
ME as a neurological disease which the government and the NHS also
officially accept.

As many of you will be aware from the latest news concerning the tragic
death of one of our members, Sophia Mirza, an Inquest was held on 13th June
2006, in Brighton Coroners Court, England and the cause of death was stated
as:-

'The verdict was Acute aneuric renal failure due to dehydration arising as a
result of CFS'

At the Inquest the pathologist also stated: -

'ME describes inflammation of the spinal chord and muscles. My work supports
the inflammation theory. There was inflammation in the basal root ganglia.'

Pathologist, Dr. O'Donovan, also stated that Sophia probably died of
dehydration, technically acute aneuric renal failure.

He also stated that dorsal root ganglionitis is a pathological condition. He
said that psychiatrists were baffled by her illness but that "It lies more
in the realms of neurology than psychiatry, in my opinion."

Based on the latest findings and the fact that this condition is a
neurological disease, we now call for and demand that central government
funding is now released in order to fund the gene research studies currently
being undertaken by Dr Kerr (at London) and Dr Gow (at Glasgow University).
In addition, we also call for the vital research studies that have been
conducted and funded by ME Research UK (formerly MERGE) to be allocated
central government funding.

As mentioned above, there has been much reporting of inflammation in ME by
many renowned scientists over the last fifty years, much of which has been
dismissed out of hand by psychiatrists (who have a vested interest in
denying the biological nature of the disease in favour of a psychiatric
one). Now because of the definite and official findings from the case of
Sophia Mirza, we also feel it is extremely important to development autopsy
protocols to ensure tissues are retained and appropriately stored for future
examination at major international ME/CFS research centres.

For too long, much of the medical profession, especially psychiatrists, have
continued to denigrate patients with ME, even to the point of locking them
up in secure psychiatric units (as also happened in Sophia's case) and have
refused to acknowledge the overwhelming body of evidence from around the
world that ME is a physiological disease. This must change!

Following the outcome and reported findings from the Inquest, in addition to
the fact similar findings have been contained within medical journals at
various times over the last fifty years, it is now time for funding bodies
such as the MRC to seriously and urgently release funds for the research
bodies as mentioned above.

In part of her summation at the Inquest, the Coroner said that Sophia had
been an attractive and vigorous young woman until she was struck down by
illness.

She suffered substantially and became extremely unwell and was effectively
housebound and bed-ridden. Her Mother was her devoted carer.

Our thoughts and very best wishes are sent to Criona, Sophia's mother, who
has tirelessly campaigned for recognition of her daughter's illness to be
acknowledged as a serious neurological condition.

During this time we wish to relay our sincere sympathies and condolences to
Criona for her loss and to wish her strength to continue in her campaign for
justice and in her fight to assist others with this condition. To this end
we, as a national support group for the severely affected, will continue (as
we have done in the past) to support Criona to this end in any way we can!

Website: http://www.25megroup.org