RIP Sophia

http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm

The Story of Sophia and M.E.

When Sophia was young she joined 'Woodcraft'. She loved it.  She used
to attend their weekly groups as well as going camping with them.
She became very aware of  being her own person She was interested in
recycling and the eco movement in general.  Later on, although
diagnosed as having dyslexia at the, too late age of 17,  she did a
degree in art, whilst all the time keeping alive her deep interest in
organic foods, yoga, camping, cycling, music and a belief in personal
responsibility. She incorporated her art into all of these.  She had
a zest for life, second to none.  She believed that all of us were
responsible for our actions and that we should not accept bullying to
ourselves or others.

The following is an account of some of the main events of Sophia's
illness, severe ME.

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 hospitalised 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.

In 1999 when Sophia was 26, she 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 inspect 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 the electromagnetic
fields, which also included human beings. The block of flats was
filled with T.Vs, 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 exacerbated  her
symptoms.  I had not realised that architects build a `sway factor'
into tall buildings, in order for them to remain stable.

Sophia's 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 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 could not have visitors.
Her G.P. was at a loss as to what to do.
She suggested that I put Sophia `away in a home and get on with the
rest of my life`.  I did not agree with her. 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. she told me 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.  She said that she wanted
me out of the flat and independent carers installed.   In 2001 the
G.P. approached an M.E. clinic, as she said that she needed to
protect herself legally. Sophia asked me to research the clinic,
which would have cost  the local Health Authority, 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  a graded exercise regime, 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 this clinic.

By 2002 Sophia had to eat every 20 minutes, else her symptoms would
become even more severe.   The doctor told me that she had approached
a number of psychiatrists who had not wished to be involved in such a
case.  She then went on to say how lucky she was to finally get one
who agreed.   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.  They lied.

I had already given the GP 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 read these.
The psychiatrist visited Sophia for 20 minutes one morning.  He gave
her no physical examination, which I found strange, given that her
blood pressure was 80/60. He was unable to understand that
Sophia's `body clock' was constantly on the move and that mostly her
day-time was often in our night-time.
He did not seem to understand any of her myriad symptoms.

The following day he gave a lecture on M.E. using Sophia as a case
study, to a large number of  doctors; he had not asked Sophia for her
consent.  He wanted me to be present, so I went, though I had
reservations.   He had given everyone there a handout about Sophia
and our family.  It read like a novel with some horrendous so called
alleged `facts' in it.  He had taken poetic licence to new heights. I
was deeply shocked at the way he was misrepresenting Sophia's
symptoms to the doctors and started to object, at which point I was
ushered out of the room.

The following week he asked to see me at the hospital.  He insinuated
that it would not benefit Sophia if I refused, so I had no option but
to comply.  He  told me that if Sophia refused to go to the M.E.
clinic, or if she did not recover within the following 6 months, that
he would section her under the Mental Health Act.  He added that if I
tried to stop him, he would go to the courts to have me removed as
the nearest relative.  Furthermore, he said that if I did not open
the door when they would come to take Sophia away, that he would call
the police to `smash the door down'.  When I asked him how much
better Sophia would get by such actions he replied that it was `none
of your business, that it was for the courts to decide`.  He wanted
to arrange for me to see a psychologist so that I could be made
understand the good, he the psychiatrist, was doing to Sophia.  I
refused.

From January 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 her doctor, informing her of the
progress.  She did not want to know and said that she could no longer
look after Sophia and that she was passing Sophia over to one of her
colleagues.  Sophia asked for copies of her medical notes.  These
were given at the full price of £50, having first been sanitised in
case it would affect Sophia's 'mental health'. Despite no longer
being her G.P., 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, 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 dye had been cast; they were
determined on their course of action.

Between January and June 2003 I wrote letters to the Acting Chief
executive of the South Downs HealthTrust  making him aware of the
situation and how the World Health Organisation (WHO) classification
of ME as a neurological disease was being ignored.  He did not
reply.  I sent copies of this letter to The Courts and others in the
health field.   I made a video of Sophia which I gave to a
solicitor.  The solicitor visited her and assured both of us that in
no way did Sophia fulfil the criteria of a person who needed to be
sectioned.

In  July the professionals returned  - as promised by the
psychiatrist.  The police `smashed the door down' and Sophia was
forcibly removed and taken to a locked room within a 'secure' ward of
the mental hospital.  Despite the fact that she was bed-bound,  she
did not have even basic nursing care; her temperature, pulse and
blood pressure (which had been 80/60), were never taken, her bed was
never made, she was never washed, her pressure areas were never
attended to and her room and bathroom were never cleaned.  The nurse
asked me to cook for her as the processed hospital food made her more
ill.  Sophia also had to deal with many nurses constantly going into
her room and talking to her.

The psychiatrist made it quite clear to Sophia's solicitor that he
would not release Sophia.

However, two weeks later, after a tribunal lasting 8 hours, she was
released.
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 their maltreatment.
She never stood a chance.

A few weeks later her first G.P. removed Sophia  from her practice.
I visited the new G.P. (the 3rd) who Sophia had been allocated to,
and asked what her views on M.E. were?  She said that it was a mental
illness, but that she did not interfere with the patients, but let
them `get on with it`.  I thanked her and left the surgery. From that
point on Sophia never asked to see the doctor, neither did the doctor
come 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.  They also said that the psychiatrist was no
longer working there - hand washing, big time. Within these notes we
saw correspondence from Sophia's first G.P.  (who was not mine), to
the psychiatrist, asking him to section me !! I had not realised just
how far she 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 funds to pursue this
matter…..There is no further right of review against this decision".

Between 2003-05  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 i.e. sensations like knives stabbing into her head, that
this prevented 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 tolerate about 4
ounces of water a day which was used to moisten her mouth.  At the
end of October she developed an ear infection.  Her head and neck
swelled up like a football, she was in agonizing pain.

During these 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 classification of ME.  I promised.

From Tuesday 22nd November 2005 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 (3rd), only to be
told that Sophia had been removed from their list since July of
2005.  I said that neither Sophia or 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 itself.

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 tolerate the comfort of
me or anyone just holding her hand or sitting with her.  I knew that
my child was dying did 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
research being done on Sophia.  We readily agreed as we wanted others
to benefit from her 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 here in
Brighton.
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 grateful.

The final tests have yet to be completed, but up to the present time
the results of Sophia`s spinal cord show….." an 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 those seen during active infection by herpes viruses (such
as shingles)." They are continuing this research and hope to publish
a paper when completed.

The doctors, 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, they knowingly colluded in
sectioning Sophia, simply because she exercised her right not to go
into a particular ME Clinic. This is being done all the time to young
people behind the closed doors of Family Courts; blaming families and
then tearing them apart.  The children and their families have no
redress*.

During 2005 I was collating material to give to The General Medical
Council.  Before she died I told Sophia that I was not going to take
that route and that I was going `to go public' so that others could
hopefully be saved  such suffering.
She answered…"then it will all have been worth it"…… these were her
last words.

After Sophia 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.

Statistics show that 95% of the professionals and the public do not
believe that such an illness is possible. Of the people who dealt
with us many said that Sophia was making herself ill so that she
could get attention.  Some said that I was keeping her ill so that I
could have some meaning in my life.  Others 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,
what I feel, are criminal activities,  to be condoned by the
Establishment.  I have got over 190 letters written by the various
parties, between 2000 - 03, to support everything that I have said.
In no less than 66 of these was it said that Sophia has severe ME

The inquest on Sophia is to be held on Tuesday13th June 2006.  Once
this is completed I will open  up a website so that others are made
aware of what is being done to people who suffer from ME.  There I
will  post more detailed information of Sophia's `treatment'.
I 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 who
recognise and treat it accordingly.

I hope that this 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.  This site will be reviewed regularly. I
have been given permission for it to be linked with some other ME
websites  so that with co-operation and clarity we may all be able to
hasten the end of what can only be described as a `miasma of
professional criminal brutality`.

We have lost Sophia through their actions; we have nothing more to
lose. We have no fear, therefore we are free - 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 of
being incarcerated behind the locked doors of a mental hospital. This
was not allowed. In order to get any `help', she had to consent that
she was mentally ill; this she would not do.  She lived  out 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 if that will become a reality.


Sophia 1973 - 2005  It was a privilege  to have known her.


by Criona Wilson (Sophia's mother)