Sophia was the
youngest of my four children. As a child she had chicken pox. When
she was 17 she was a passenger in two separate car crashes. Shortly
afterwards, she was hospitalized with suspected meningitis and was
given a lumbar puncture. At 19 she went travelling and working in
Africa, before which she had to have multiple vaccinations. Whilst
in Africa she had two doses of malaria.
Sophia got the ‘flu. She could not recover from it. By December of
that year she could only leave her bed to have a bath. In June
2000, she was moved into the tenth floor of a high-rise block of
flats. There, she would have a bath each day where she relaxed for
about an hour. Within three months she “crashed” and had become
bed-bound. I could not understand why, as she had done nothing
different during this time.
I then heard
about a carbon monoxide detector. I bought one and sited it near
the ventilator shaft in the bathroom. It registered positive ++. I
informed the council and the gas board who sent a man around to see
it. He flashed a torch around in the shaft and said that it was
fine. He did not seem to understand the seriousness of it and
treated me as if I were invisible. From that point onwards any sort
of chemical, such as soap, powder, perfume, detergent, cleaning
liquids, car fumes, etc. sent Sophia into further decline. She was
also badly affected by electromagnetic fields, which also included
human beings. The block of flats was filled with TVs, radios, etc.
She had also the multiple symptoms of ME including severe pain. She
became even more ill, if that were possible. She also felt the
building swaying in the wind which, in turn, escalated her
symptoms. I had not realised that architects build in a “sway
factor” to tall buildings in order for them to remain stable.
room had to be completely “blacked-out” and she also wore eye pads
as any form of light seared her eyes and affected her in other
ways. She had to wear ear plugs as any noise or sound, even the
sound of a voice, made her even more ill. She could not bear to be
touched for the same reason, even though she craved the human touch
and the comfort it gave. Since that time she had been unable to
have either a bath or a hair wash as water too magnified her
symptoms. She was only able to lie on her right side. She had, for
most of this time, been unable to speak. She had been unable to
read or write, listen to the radio or have any electrical gadgets in
her room. She was unable to have visitors. Her G.P. was at a loss
as to what to do. The G.P. suggested that I put Sophia “away in a
home and get on with the rest of my life”. I did not agree. Years
ago, I had nursed patients with all sorts of diseases; never had I
seen anyone so profoundly ill in so many diverse ways, as Sophia.
During one of
my visits to Sophia’s G.P., I was told that Sophia had made herself
ill and that I was keeping her ill and as long as I was looking
after her she would never recover. The G.P. said that it would be
better with me out of the flat and independent carers installed. In
2001, the G.P. approached an M.E. clinic, telling me, for legal
protection of the G.P. and the surgery. Sophia asked me to research
the clinic, which cost thousands of pounds. They told me, when I
pressed them for long-term results, that patients usually revert to
the point from whence they started. I spoke to a couple of
ex-patients who were afraid to have their names used; they said that
this clinic was run on the lines of mental health and used Graded
Exercise, although it claimed to be a neurological clinic. They
also said that when patients did not get better that they were given
a different diagnosis before being sent home. Sophia elected not to
go to the clinic.
Sophia had to eat every 20 minutes, else her symptoms would escalate
to even more
heights. The doctor told me that a number of psychiatrists had
been approached who had not wished to be involved in such a case,
adding how lucky we were to finally get one who would agree. I
voiced my fears that Sophia would be removed from her flat; both the
doctor and subsequently the psychiatrist assured me that this would
never happen. This proved untrue, later.
I had already
given the G.P. copies of Margaret Williams’ “Denigration by Design”
and “Information for Clinicians and Lawyers” by Marshall, Williams
and Hooper; I now gave copies of these to the psychiatrist. It
would appear as if neither of them had even read these.
psychiatrist visited Sophia for 20 minutes one morning.
psychiatrist gave her no physical examination, which I found
strange, given that her blood pressure was 80/60 and was unable to
understand that Sophia’s “clock” was constantly on the move and that
mostly her day-time was in our night-time.
The psychiatrist did not
seem to understand any of her myriad symptoms and the following day
gave a lecture on M.E. to a large number of doctors; never having
asked Sophia for her consent.
The psychiatrist wanted me to be
present, though I had reservations, and gave everyone there a
handout about Sophia and our family, (which I only received later as
part of the pack of Sophia’s notes).
It read like a novel with some
horrendous so called “facts” that I did not recognise as a true
representation. I was also shocked at the misrepresentation of
Sophia’s symptoms to the doctors and started to object, at which
point I was ushered out of the room.
week the psychiatrist asked to see me at the hospital, in a manner
that I interpreted that would not benefit Sophia if I refused. I
had no option but to comply. I was told that if Sophia refused to
go to the M.E. clinic, or if she did not recover within the
following 6 months, that she would be sectioned under the Mental
Health Act, then added that if I tried to stop this, then the
psychiatrist would go to the courts to have me removed as the
nearest relative. Furthermore, if I did not open the door when they
would come to take Sophia away, that the police would be called to
“smash the door down”. When I asked how much better Sophia would
get by these proposed actions, the reply was given that it was “none
of your business, that it was for the courts to decide”. The
psychiatrist wanted to arrange for me to see a psychologist so that
I could understand the good, that the psychiatrist, was doing to
Sophia. I refused.
2003, Sophia had started to improve; she was able to tolerate some
light, talk, sit up and have a few visitors. This continued and I
wrote in detail to Sophia’s doctor, informing
the progress. The G.P. did not want to know and said that Sophia
could no longer remain a patient and that Sophia was being passed
over to a colleague. Sophia asked for copies of her notes. These
were given at the full price of £50, having first been abridged in
case it would affect Sophia’s “mental health”. Despite no longer
being her doctor, this very same doctor, along with the psychiatrist
and social worker tried to enter the flat to section Sophia in May
2003. They were not allowed in. I then phoned the doctor and said
that Sophia was devastated and that she did not want to be sectioned
and that she was willing to go into a different clinic. The doctor
said “it’s too late for that now”. The die had been cast; they were
determined on their course of action.
January and June 2003, I wrote letters to the Acting Chief Executive
of the NHS Primary Care Trust and to many others, making them aware
of the situation and how the World Health Organisation (WHO)
classification of ME, as a neurological disease was being ignored.
No replies were received from the Trust directly. I made a video of
Sophia, which I gave to a solicitor. The solicitor visited Sophia
and assured both of us that there was no way that Sophia fulfilled
the criteria of a person who needed sectioning.
In July, the
professionals returned - as promised by the psychiatrist. The
police “smashed the door down” and Sophia was taken to a locked room
within a locked ward of the local mental hospital. Despite the fact
that she was bed-bound, she reported that she did not receive even
basic nursing care, where her temperature, pulse and blood pressure
(which had been 80/60), were never taken. Sophia told me that her
bed was never made, that she was never washed, her pressure areas
were never attended to and her room and bathroom were not cleaned.
The nurse asked me to cook for Sophia as the processed hospital food
made Sophia more ill. Sophia also had to deal with all the nurses
constantly going into her room and talking to her.
psychiatrist made it quite clear to Sophia’s solicitor that Sophia
would not be released. Sophia’s solicitor then requested a tribunal, which was held two weeks after
Sophia’s sectioning. The tribunal lasted 8 hours.
Sophia. It was too late; the damage had been done. Sophia
relapsed, not to where she had been before, in Spring 2003, but to a
hell-hole to which she had never been. She never recovered from
this “treatment”. For her it was the equivalent of being in a
tsunami from May - July, but this one was man-made.
She never stood
A few weeks
later, her G.P. removed Sophia from the practice list of patients.
I visited the new G.P. who Sophia had been allocated to, and asked
what their personal views on M.E. were? The response was that it
was a mental illness, but that the new G.P. did not interfere with
the patients, but let them “get on with it”. I thanked the G.P. and
left the surgery. From that point on, Sophia never asked to see the
doctor, neither did the doctor ask to see her. The hospital sent a
letter saying that we could now have copies of Sophia’s notes - we
had been trying to get them for over 8 months. Within the letter
from the hospital they said that the psychiatrist we had seen was no
longer working there. Within these notes we saw correspondence
from Sophia’s first G.P. (who was not mine), to the psychiatrist,
asking for me to be sectioned !! I had not realised just how far
that G.P. was prepared to go in order to have independent carers
looking after Sophia.
We tried to
take legal action. Funding was refused on the grounds that …
“there was insufficient evidence of clinical negligence … and that
there were no significant human rights issues which would justify
the use of public finds to pursue this matter ... There is no
further right of review against this decision”.
Between 2003 -2005,
Sophia struggled hourly / daily to get back to the point of health
she had prior to her incarceration. By July 2005, it seemed as if
she had started to progress. In September, this monster of a
disease took another turn. Sophia had become allergic to any and
all types of food. Physically, she could eat, but the reactions
were so severe, e.g. knives stabbing into her head, that this
precluded her body being able to accept the food. Five weeks later,
any sort of water or liquid had similar devastating effects on her;
her glands would balloon-up and she felt as if the circulation in
her legs was being cut off. She could only bear about 4 fluid
ounces of water a day, which was used to moisten her mouth. At the
end of October she got an ear infection. Her head and neck
swelled-up like a football, she was in agonizing pain.
weeks, I asked her on a regular basis if she wished me to call a
doctor? Her answer was always the same, “no”. Way back in 2003,
when she knew that the doctors were treating her as a mental
patient, (and ignoring what the WHO said about M.E), we discussed
the subject. She asked me never to let a doctor near her who did
not concur with the WHO. I promised.
22nd November, Sophia could not move an inch, neither
could she sleep. On Friday 25th she died. I did not
cry. I gave thanks that I had been able to keep my word that she
would never be locked-up in a mental hospital again. All my
grieving had been done during the previous 6 years and especially
during the last 9 weeks, when I used to walk the streets with tears
streaming down my face, knowing that there was nothing that I could
do to help or comfort Sophia. Family and friends came to say their
goodbyes to her. Four hours later, I phoned the new doctors, only
to be told that Sophia had been removed from their list since July
of 2005. I said that neither Sophia nor I had removed her name.
They did not seem interested. The doctor did not come out. I then
called the ambulance men, who in turn called the police and the
coroner’s staff. The ambulance and police staff were kindness
Those last 9
weeks were something else. I had to take the responsibility for
implementing Sophia’s wishes. By virtue of this monster of a
disease, she still had to remain in blackout conditions and in
isolation as to do otherwise would automatically tip her into
another unknown hell. Even when I knew she was in agony and that
she was virtually on her death-bed, she could not have the comfort
of me or anyone even holding her hand or sitting with her. I had to
know that my child was dying and do what caused her least pain,
irrespective of my own feelings. We each had our own agony, as did
the rest of our family and friends.
An autopsy was
performed on Sophia. No cause of death could be found. A fortnight
later more tests were carried out with the same results. Her heart
was then sent away for testing which still showed up no
abnormalities. Simon Lawrence from the 25% ME Group asked us if we
would consider some research being done on Sophia. We readily
agreed as we wanted others to benefit from Sophia’s life and death.
Sophia’s spinal cord was taken away for research by Dr Chaudhuri in
Romford and Dr O’Donovan in Cambridge. Permission for this was
granted by the coroner. I understand that the coroner was unusual
in allowing such research to be performed. Everyone at that office
was most helpful to the two doctors involved. For this I am so
tests have yet to be completed, but up to the present time the
results of Sophia‘s spinal cord show …
“unequivocal inflammatory changes affecting the
special nerve cell collections (dorsal root ganglia)
that are the gateways (or station) for all sensations
going to brain through spinal cord. The changes of
dorsal root ganglionitis seen in 75% of Sophia‘s spinal
cord were very similar to that seen during active
infection by herpes viruses (such as shingles).”
are continuing their research and hope to publish their paper when
social workers, chief executives, courts and others were well
informed in writing, by me, of all the events that were about to
unfold in early 2003, and yet, Sophia was “sectioned” as a result of
exercising her right not to go into a particular ME Clinic. There
are many similar calamities being reported of young M.E. patients
being separated from their families behind the closed doors of
Family Courts; and families being torn apart. The children and
their families appear to have no redress.
During 2005, I
was collating material to give to The General Medical Council.
Before she died, I told Sophia that I wanted “to go public” so that
others could possibly be saved such suffering. She answered … “then
it will all have been worth it” … these were her last words.
died, I asked, as her “personal representative” to see all her
notes. This was refused. I was told that I would have to go
through the courts in order to access them.
I have read
suggestions that 95% of professionals and public do not believe that
such an illness is possible. Of the people who dealt with us, about
50% said that Sophia was making herself ill so that she could get
attention. The rest said that I was keeping her ill so that I could
have some meaning in my life. A mixture said that she just wasn’t
ill at all, that it was all “in the mind”. I do feel that I owe it
to Sophia and all the other sufferers and their families not to
allow this story to be airbrushed out of history. I have over
190 letters written between 2000 - 2003 to back up everything that I
have said. In no less than 66 of these, was it said that Sophia has
The inquest on
Sophia is planned to be held on Tuesday13th June 2006.
Once this is completed we are planning to open up a website so that
others are made aware of what is being done to people who suffer
from ME. There, we will be posting more detailed information of
Sophia’s “treatment”. We also wish to use this site later on as a
directory for the names of those doctors, scientists, organisations
or individuals, in the U.K., who really do believe that they, like
the World Health Organisation, recognise that this is a physical
neurological disease, and treat it accordingly. We hope that it
will make it easier for all ME sufferers and their families, as well
as professionals, to have instant access to many names that they can
trust. The intention is that this site will be reviewed regularly.
Hopefully, the proposed website could be linked to other websites of
similar interests to publicise best practices.
loss of Sophia, I and my family feel we are free to speak the facts
as experienced by Sophia. Whatever we say or write now will not
bring her back to us. Sophia wanted to get better and live, but she
needed to be able to live as a “free person”, not ruled by fear,
incarcerated behind the locked doors of a mental hospital. This was
not allowed. In order to get “help”, she had to agree that she was
mentally ill; this she would not do. She lived her beliefs. I have
never in my life known a braver or more courageous person than
Sophia. She was an inspiration to us all. I do believe that every
parent would say exactly the same about their child who is suffering
from ME. It was Sophia’s wish that her living and suffering should
not be in vain, but that it would help others. Only time will tell.
1973 - 2005 It was a privilege to have known her.
by Criona Wilson
Link to the ITV Meridian interview
with Criona Wilson
Link to the Inquest into the Death of Sophia Mirza.
(Translations are available)
Add your comments to our Sophia response
Link to Criona's own web site
(see our May 2008 newsletter here)
You Tube - My Sister by Roisin Mirza
and What of Sophia?