Discussion in 'Fibromyalgia Main Forum' started by simpsons, Sep 7, 2009.

  1. simpsons

    simpsons Member

    hi rich thanks for your advise and kind response to my request for help with my dr and the m cycle hpose is still reading and learning so hope for me there. i will keep you updated and will also try epsom salts as i have positive prof k d m test for your poll

    i have a problem with using the board now though as i am very upset by no fools degrading comments about sofia mirza with no research of any intelligence the tragic death of sofia and her saint of a mother and sister their pledge to do anything in their power to help us all is only to be commended.

    as you will be aware the leading dr.s kerr chaudhri etc have been all over this case and there is no doubt the 25 per cent group got proper testing and its on the death cert.

    to slander this tragic death and the good work or this family is something i can not forgive. respect the poor girl who is dead from the diabolical treatment of uk dr's

    i have never received a positive or balanced answer from no fool who has only shown now to be a fool by stating slanderous opinions on her family and their Stirling efforts for the ME community not only in the uk but world wide is shocking and scandalous

    i see others have also been attacked and new comers to the board are also shocked and will leave if they haven.t already

    not only is this bad for everyones health and well being but now the board is no longer a positive place to be there have been others in the uk who have been causing a war and attacking those who at great cost to their health tried to help the community as a whole and now it si happening here also

    i refer you to john herds posting on co cure about the damage that this type of attack mentality caused in the eighties and think that members of the board who are seeming to inject with a poison ie no fool should be banned as others are calling for i see in his post

    the poor girl is dead may she rest in peace without people like no fool causing upset to her family by posting this type of rubbish

    it is extremely offensive and i did not think that sort of thing was allowed

    you will know well the evidence that the leading uk dr's and charities have on this case there is no doubt which any one who researched this with intelligence can see

    it is dangerous to allow this type of posting that has no basis in fact

    if you wish to ban me for this then that is fine but i cannot allow this to continue wtihout saying anything. we all have little energy as it is without this using it up no fool seems to be abusing people and causing a great deal of upset this can cause a relapse for some that may take years to recover from or perhaps not at all though for most hopefully it will only take a short time or at least i pray so

    thank you again for your prompt reply and great links i really like to see the one that explained the link with lime and ME very ver interesting. my dr is learning reading up and hopefully i can start soon under his supervision

    also the last lot of melatonin that i got from pro health made me feel quite odd the next day where as before it has always been good with no side effects is there any thing that could be the reason for my reaction to it this time please
    kindest regards

    [This Message was Edited on 09/07/2009]
  2. richvank

    richvank New Member

    Hi, simpsons.

    You are very welcome for my previous response.

    I'll be very interested to hear about your response to Epsom salts.

    I don't know why the last lot of melatonin would have affected you differently from the way the previous ones did. It's difficult to say whether it was something to do with the supplement itself or whether something changed in your body.

    I am aware of the story of Sophia Mirza, and I'm very sorry that the facts about her were misrepresented. I think it's well to keep in mind that the truth is the truth, regardless of whether an individual believes it or not.

    Best regards,

  3. simpsons

    simpsons Member

    many thanks
    kind regards
  4. simpsons

    simpsons Member

    i do not disagree as you can see they said that acute renal failure due to renal failure due to dehydration arising as a result of cfs (ME).

    it has reduced me to tears to read this again i suggest that you read and research all the information on her mothers website all the information on the 25% ME group and invest in me. i am ill and tired so will leave you tofind the web pages as you seem to have plenty of energy to post frequently. I do not wish to discuss this further. there is further evidence which cannot yet be published for legal reasons. perhaps if you read this you will see just
    how uk patients are treated and why we fight so hard. please let sofia and her memory rest in peace. when you have read all the evidence on her mothers site you will see

    The medical cause of death was
    1a) Acute aneuric renal failure due to dehydration
    1b) CFS
    2) Previous history of meningitis, dorsal root ganglionitis and hepatic steatosis.

    Sophia died as a result of acute renal failure arising as a result of Chronic Fatigue Syndrome (M.E.)


    Today, 13th June 2006, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England.

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

    Two pathologists could not agree which name to use - CFS, ME or ME/CFS.

    In the end it was stated that CFS is a modern word for ME.

    This is why CFS was used on the death certificate.

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

    This is her mothers own words from the invest in me website where you will find links to further tv coverage.

    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, 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 what we did 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 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.

    In 1999, 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.

    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 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.

    By 2002, Sophia had to eat every 20 minutes, else her symptoms would escalate to even more severe 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.

    The psychiatrist visited Sophia for 20 minutes one morning.

    The 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.

    The following 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.

    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 Sophia’s doctor, informing of 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.

    Between 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.

    The 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.
    They released 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 chance.

    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.

    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. I promised.

    From Tuesday 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 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 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 grateful.

    The final 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).”

    They are continuing their research and hope to publish their 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, 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.

    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.

    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 severe ME.

    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.

    Following the 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.

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

    by Criona Wilson (Sophia’s mother)