Sophie Mirza's story reaches national media

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At last Criona Wilson has had at least part of the story of her daughter's abuse at the hands of the UK psychiatric profession, and her subsequent death from M.E., published in the UK national media. her website is

http://www.sophiaandme.org.uk/



They told dying daughter she was lying, says ME mother Criona Wilson:

http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece

(comments can be left or the letters to editor address is letters@thetimes.co.uk )



"As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.


“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.” "
 

Kati

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It sounds like the press in UK has caught up with the injustice and bigotry of the health care system. May this be the saving grace into taking Wessley down and out.
 

CJB

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It's hard to believe this happened in a first-world country in the 21st century. It wouldn't be any more shocking if they had burned her at the stake. Why is it so easy for the medical profession to ignore the evidence that this is an organic problem. for the sake of the small number of people who WOULD try to fake it, they punish so many who are really sick. To think that the coroner was the only medical professional who ever looked for a physical cause.

Her death grieves me so. Rest in peace, sweet one. Your passing was tragic, totally avoidable, but hopefully not in vain.
 

Abraxas

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Thanks Min, the Times seem to be doing a fair job of covering ME recently. Did this really have no coverage in the national media at the time? Shocking if so.
 

boomer

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These media articles that provide opportunities for people to comment at the end are a good opportunity to raise awareness of M.E. with the general public. The more feedback the more likely to keep this article posted.
 

Quilp

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At last Criona Wilson has had at least part of the story of her daughter's abuse at the hands of the UK psychiatric profession, and her subsequent death from M.E., published in the UK national media. her website is

http://www.sophiaandme.org.uk/



They told dying daughter she was lying, says ME mother Criona Wilson:

http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece

(comments can be left or the letters to editor address is letters@thetimes.co.uk )



"As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.


“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.” "
Were does psyquackery end and criminality begin ? Human compassion can flow so freely, meandering its way through the complex machinations of human existence. An irresistable force of nature against the immovable righteousness of those that have turned the other cheek. How far does that cheek have to turn, how many eyes have to be averted. It's there right in front of you, the truth. How can so many people be so wrong so many times. This is a crime that doesn't have a name, this is a name that doesn't have a crime.

Thanks for the article, love, Mark
 

Abraxas

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As far as I'm aware the story was only aired on the local television:

http://www.youtube.com/watch?v=0Y_T5ylWUv4
Thanks. It's an important story to be covererd in a national paper for the simple fact that it was proven that she actually died from ME, in contrast with Lynn who was assised to die which would hopefully strengthen the publics awareness of the seriousness of ME.

(btw, did anyone find out more what happened to Lynn's body which was donated for research?)
 
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There is a rumour that inflammation similar to Sophie's was found in her spinal cord, but this has still to be officially confirmed as far as I know.
 

Wayne

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Threats of Incarceration

One of the replies on the times article mentions somebody in Britain with ME who was threatened with sectioning...

A close friend of mine has suffered with ME for the last 20 years or so... he too was called a liar and malingerer...and also threatened with sectioning... he moved to France last year and gets the treatment needed... its not perfect but now at least there is some relief.
Makes you wonder if Sophia's case is just the tip of the iceberg.
 

Mithriel

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They can't talk about the horrendous number of children who have been taken into care and locked psychiatric wards because children are dealt with by special courts which are held in secret. It is meant to safeguard children who are abused, but the weasels are hiding behind the "no publicity" rules.

The harm they have caused is incalculable and the smarmy condescending way way they talk about their treatments as cures and imply that it is the patients refusing to believe that is the problem incenses me.

The public and health officials may be fooled but they know the truth and so do we.

Mithriel
 

oerganix

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Yes, Wayne, we had a guy on here earlier who had been "sectioned" in UK. Refusing medical treatment the patient thinks is deleterious or useless is converted to being "a danger to oneself".

The push in on in the US to amend the diagnostic bible to include cfs as a somatizing illness. I think the psych industry is afraid of being exposed for the quackery that so much of it is, so it is trying to psychologize illnesses as much as it can, to keep "market share". In the US they are trying to get the requirement of having two doctors' signatures to forcibly commit someone, to only one signature required.

Unfortunately, when someone is committed, it is the police who help incarcerate them. A relative of mine was forcibly committed. He was never violent but had had a history of verbally and brilliantly mocking the local police and when they removed him from the courtroom by four well armed cops, they tripped him at the top of a long flight of stairs, while he was in handcuffs. As he fell, he suffered a hernia that had to be surgically repaired. They claimed he was "trying to escape". I was there and he did nothing that was non-cooperative. The locals were not about to stand up to the police, so nothing was ever done about it. In fact, our family feared that he might not even make it to the mental institution to be "evaluated" since it was a several hundred mile trip in a police car with the same cops who basically tossed him down a flight of stairs in front of everyone. I believe my brother may be suffering from a viral or bacterial infection of the brain and nervous system, just as I believe I am. Many of his symptoms match those I read about on Lymenet in an article where a psychiatrist writes with compassion of the neurological damage and the resulting behavioral problems caused by the spirochete that causes Lyme disease. My brother has two patents and has invented a number of other things he couldn't afford to patent.

I add the youtube link to many of my comments on other sites where there is doubt about seriousness of the illness or the cruelty of the medical industry and the way they cling to their ignorance. Sometimes a picture is worth a thousand words.
 
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It has been a while since an article "hit me" such as this one did. I was accused of Munchausens by Proxi and was "Investigated" for 5 (very long) years before the charges were dropped. My son Blake was ill, could not attend school, and I fought for him when he did not have a voice nor have the strength to eat or get out of bed. His illness began at age 14 and he was not diagnosed until he was 20 years old, thus professionals and abusive family members felt that "I was making my son ill." They did not believe Blake was ill.....they could not believe a 3.5+ GPA student who played 5 sports first string could just stop participating in life; with no medical explanation. Once the medical explanation came in....it took some time for "belief" to sink in. I live in CALIFORNIA. I drive race cars, own a ranch, am in politics and am a GOOD PERSON. I love giving to others and being part of a socially conscious group of people that genuinely care about humanity. This disgrace, discrimination and prejudice against and about our disease is World Wide/Universal. As ill as I am with this disease, the more articles I read such as this only IGNITES my passion and energy level to fight for other children out there who are sufferers. I will not stop until this is a "recognized" illness and one in which patients and caregivers are treated properly. Thank You so MUCH for this post. Blessings, Julia...http://vlgonvalcyte.wordpress.com/
 
T

thefreeprisoner

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Hi Julia,

I'm so sorry to hear about what's happened to you. All this stuff just sounds so ridiculous, so Victorian (although it does sound to me like the Victorian doctors who treated Neurasthenia did so with a lot more compassion and understanding than some psychiatrists these days) and you can scarcely believe it until somebody tells you their personal story and you realise it is true.

After a high profile court case in this country about the ridiculous made-up illness 'Munchausen's by Proxy" it has been seriously discredited here and is no longer allowed to be used in a court of law as a medical definition. The guy who I believe coined the term, Roy Meadow came very close to being struck off for serious professional misconduct. (Read his Wikipedia entry if you haven't already -- I found it an eye-opener.) Pretty much every guilty verdict in every trial at which he was an expert witness was quashed.

It's people like this that make me very angry indeed.

So I am amazed at your courage. I know what it's like to be taken to court and it was one of the worst experiences of my life; and I suspect the stress played a large part in my current relapse of ME (not that I believe it is all mind over body, but I have heard that stress can be one of the factors that wakens up a viral infection) I can't even begin to imagine what it was like being charged of child abuse.

WELL DONE and BLESS YOU TOO - you're an inspiration to us all for pulling through.

Rachel xx
 
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A lot of people here have had awful experiences. I think I was one of the lucky ones. I got ill in my final year of school (Well the year you can leave school), because of this, the authorities didn't get involved, when I did not attend. Also, I still lived at home, so I had no worries regarding mortgage, rent, bills, etc. By falling between the gaps, I learnt that the doctors knew nothing, and that my body needed rest. I am sure this has contributed to the improvement in health. I also know that not everyone has this space within the disease, to reduce, over many years, some of symptoms.

I have just listen to Dr Bell's talk. He mentions how AIDS was't taken seriously, even when people were dying. It was the virus that grabbed the attention for those patients. This historical footnote has convinced me that nothing but absolute proof of the cause will change the situation. Hopefully Dr Elizabeth Unger will be the start of a new CDC CFS research program. ;)

Sorry my thoughts are a little scatty, but you know what I am saying.
 

Abraxas

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I have just listen to Dr Bell's talk. He mentions how AIDS was't taken seriously
I just read the transcription of Dr Bells talk too. This is what he said about AIDS:
Back in 1980 when AIDS first came on the scene, people were saying it was a type of psychosomatic illness and this went on for several years even with patients with HIV were dying, they were saying "Well, it's a real bad psychiatric disease." [laughter] I'm not kidding... there was a big controversy.

Then the virus was discovered and the research took off from there. It didn't take off right away, it actually took a couple of years for people to get the message that this was really important. The reason they got that message was because patients started getting HIV from blood transfusions. When that happened the politics started to change. But HIV as a retrovirus, a human retrovirus, is now somethng that can be treated quite well.
 

fds66

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Thanks for posting the link. I saw this in the paper today and it is the second article in the Times this week I think.
 
D

DysautonomiaXMRV

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I wonder if people are universally aware that Sophia's mother made an official complaint to the GMC (General Medical Council) in the UK and, the end result was no action was taken against the individuals involved in Sophia's care, despite her death.

In a lot of ways Sophia is an unwitting political martyr, but more so, a terribly sick young lady with a horrific illness that was simply not believed.