Severe MESophia Mirza - Your Responses

What a wonderful mother Criona is. I gave my Mum a big hug after reading Sophia's story. I had been bedridden for a few years and was always terrified of the Doctors so avoided them at all costs. My Mum even told the Dr that wanted to visit that I was too ill to see him - only with M.E. can you understand that one!

This is horrendous but typical of the so called medical profession's attitude that if we can't explain it doesn't exist.

I hope that there will be more research so that there can definitive proof of this horrible disease, and that people will get the treatment they deserve and need!

As a fellow suffer of this nightmare illness I have to say after reading your brave daughter's fight against this moved me to tears.

I am not known to cry - a fully grown man of 44, I am now into my 6th year, soon planned to get married but my girlfriend is very worried about what to expect - the outlook will be for her having to deal with me as I get worse. I have got to the stage where I can no longer breathe through my nose channel despite 4 operations. They have said there is nothing more they can do so I am now finding myself becoming very fatigued by about 11am sleeping for about 9 hours per day and again during the night, I have lost a lot of  weight gone from 12 stone down to 9 stone in one month.
I wish the government would put more money into research to find a cure for this bad painful illness.
I really share your deep loss I have sent your link to Sophia's page to all my friends around the world.
my warmest regards for bringing in a wonderful person your daughter
your loving friend
Iain

I recently came upon Sophia's story on you tube and I thank you for bringing the awareness needed so that hopefully one day, even my own family will take me seriously.  It would be great to find a doctor who would take me seriously too especially since it has been easy to be coerced into doubting myself as some sort of mental basket case instead of someone who feels like they've got the flu a lot of the time and has to patiently wait for life to be worth living again.  Imagine if you had the flu for decades...what would you do?  Can you remember the joint and muscle pain that made you groan with the dinky die flu?  That's what its like non-believers.

I had mycoplasma pneumonia once and did not even know it because it was so mild in comparison to the norm for me at the time.

I am glad Sophia never doubted herself, her lesson here on earth was obviously learned better than some of the rest of us.  Bravo Sophia.

No words can take away your grief. Sophia was lucky to have such a wonderful mother as you Criona, who obviously believed in her daughter 100%. I too have such a mother, bless you mum.
My ME/CFS is not severe, but even so I feel that my life is "on hold".
It began with flu on 22 September 2004.
I live with the hope that one day there will be a cure for this life crippling illness.
I have found that niacinamide helps a little -  from an alternative doctor. Vitamin B12 first in tablet form now injections - from the only specialist clinic in Sweden ( Gottfriesmottagningen ). This is by no means a cure just something that made a difference to me. I hope it can help someone else too, until there is a cure.

I have been sick for three and a half years, also looked after by my mother who works very hard to maintain a stable environment so that my health doesn't decline any further.  The disease is a formidable one, but the opposition and suspicion faced by sufferers and their carers is overwhelming.  I'm haunted by the damaging and obtuse comments that have been made over the years by various doctors, and while Sophia's story is tremendously sad and infuriating, I feel a little less alone for having read it.

These doctors have a lot to learn. My mother has had M.E for years, but has done vast research into ways of treating it...into medical negligence, into post-traumatic stress disorder & how it can trigger off M.E/CFS./Thyroid problems.
It is the great medical scandal of the past few centuries.
Well done for putting up a fight...thousands wouldn't! xxx

I have just read Sophia's story to which I could not believe how disgusting Sophia and yourself were treated and the tears streamed down my face. First of all I just wanted to say how beautiful Sophia was and she is an absolute credit to her mother and, in fact, of all us. I have suffered with ME/CFS  for almost 3 years but nowhere near as severe as Sophia suffered and I can't imagine how she had the strength to carry on especially in the disgraceful way she was treated by our so called trusted doctors etc. Thank you so much for sharing Sophia's story with us all and I hope and pray this will make people wake up and realise just how disabling condition ME/CFS really is and how difficult it is for ME/CFS sufferers' families to watch there loved ones go through this chronic illness.

Thank you so much for sharing your daughter's story, and for writing so well. I am glad I found this Web site. Thank you for your work in publicizing this and supporting research. Someday it will be a tremendous help for those who are too sick to do it themselves. I hope you will continue, because you are doing a good job.

The logic of 95% of doctors is astoundingly horrific. It seems a daunting thing to change. If they need physical proof, I believe we are getting close to providing it. But what can we do when even in the face of unquestionable physical evidence, nearly all doctors are stuck in their magical catch-all "all in the mind", psychological, somatisation explanation for anything and everything they don't understand and can't admit to not knowing. And even with new research findings, they don't want to learn something that would make them have to admit that they were wrong.

My heart goes out to Sophia's family for all they have suffered in the name of ignorance, and to all the others who have contributed to this page. 
I have just begun my battle to find a diagnosis for my symptoms, which began 7 months ago.  Despite seeing three different doctors (GPs), and my surgeon (I had a hemi-colonectomy in February), I was treated as just another anxious/depressed/hysterical female.  I finally happened upon a sympathetic doctor, when I walked into ER one evening to have my B/P checked as I felt so terrible.  (I was still working fulltime at this stage, just a few days before I "crashed".)  My B/P was the highest it had ever been..... thanks to the increased dosage of anti-depressant prescribed by the last well-meaning doctor I saw!  He, just as the others before him completely ignored my statement that I knew something was wrong with me and that I wasn't depressed, except by my health issues. 
However, at last I was being taken seriously.  The new doctor (older and wiser than the rest), listened to me and immediately devised a course of action.  I am now seeing a Neurologist and have had various tests to rule out the myriad of neurological diseases out there.  I have been reading intensively over the past two weeks since becoming housebound, and I came to my own conclusion just yesterday - that I have Myalgic Encephalomyelitis/CFS.  (It is better known as M.E. in New Zealand where I was born, though I now reside in the U.S.)
I see the Neurologist in one week and I will be very interested to see if he has drawn the same conclusion.  I will be going to the appointment armed with every piece of information regarding M.E., just in case he is not as informed as I would like. 
I would like to encourage everybody out there to be as proactive as they can be in their own health issues.  Just as Sophia's mother found (and I hope and pray that that is the worst case we will ever have to read about) .... you have to stand up for what you believe is right, and you have to fight.  I almost threw in the towel a few weeks ago when I felt too tired to fight anymore.  My dear husband wouldn't allow me to though, and now I am looking forward again with the knowledge that SOMEBODY is doing SOMETHING to try and figure me out.
I began this fight hoping for a benign, operable brain tumour (CT scan ruled that out), then maybe Myasthenia Gravis with an enlarged thymus that could be removed and send me into remission, but the EMG tests and blood tests all came back negative.  I am hoping the MRI of my brain and spine that I had a few days ago will prove valuable as a diagnostic tool. (Resource: An Overview of the Canadian Consensus Document - A Clinical Case Definition and Guidelines for Medical Practitioners).  I encourage all who have ME/CFS to read this 28 page document, print it out, and take it to their care provider.
Love and peace to all, Nettie
P.S.  Roisin, please feel free to use any of my comments for your book, and good luck with the publishing.

Thank you so much for sharing your daughter's story, and for writing so well. I am glad I found this Web site. Thank you for your work in publicizing this and supporting research. Someday it will be a tremendous help for those who are too sick to do it themselves. I hope you will continue, because you are doing a good job.

The logic of 95% of doctors is astoundingly horrific. It seems a daunting thing to change. If they need physical proof, I believe we are getting close to providing it. But what can we do when even in the face of unquestionable physical evidence, nearly all doctors are stuck in their magical catch-all "all in the mind", psychological, somatisation explanation for anything and everything they don't understand and can't admit to not knowing. And even with new research findings, they don't want to learn something that would make them have to admit that they were wrong.
 

Dear Criona,

Sophia is that butterfly that flapped its wings on one side of the world and causes a hurricane on the other side of the world. We are all drip fed a diet of trusting in the knowledge of doctors and paying homage to their elevated place in society. However, as many of us know, there are some unscrupulous healthcare professionals who disgrace their profession and who would rather cease to breathe rather than to admit an error in their judgement. That you have survived their wrath is testament to your strength and integrity.

Sophia is so very lucky to have you as a mother. You are a guiding light out of the hellish darkness that Sophia was forced into and you should feel certain that you have support and admiration from other people with ME/CFS and their families.

ME/CFS appears to be the modern day leprosy. Those who are affected are so weak as to not have the breath to make their voice heard and those who have a modicum of strength are up against the injustice of misdiagnosis and can ill-afford to ruffle the feathers of the establishment who jangle the keys to psychiatric wards in defiance. By sharing your story, you and Sophia are helping to make treatment for PwME less treacherous.

From the heart: thank you and very best wishes from a person with M.E.
 

I can't believe this happened to anyone. What a brave, wonderful young woman - with an equally amazing mother.

I am 20 & have had CFS (as we call it in Australia) for 2 years. I am seeing a fantastic dr. who accepts & treats CFS as a physical illness & I am so insanely determined to get better & raise awareness of CFS and help others with CFS. I will do everything in my power to make this world understand this illness.

I first heard of Sophia's story in my CFS dr.'s clinic - he has it on his wall as part of his push to prove it's a physical illness.

I hope with everything I have I live to see a cure & a cause found for this horrible illness. I wouldn't wish it on my worst enemy.


Natalie

Sophia's story has deeply touched me and my family. I would like to tell Sophia's mum that although her story has ended in tragedy I would like to say the following.

As an ME sufferer I was feeling very down. I wanted my life back. I was angry, depressed and my doctor seems very reluctant to discuss my ME. I have at times felt very isolated and lonely. When I am out in public, on GOOD days people find it hard to believe that I am ill.

You must be so proud of your daughter, although she suffered in life she has given so much hope to other sufferers. I think at last people are starting to realise that this is a devastating illness thanks to tests done on Sophia

Amanda

Keep fighting on. I am just going through what you have been through.

My daughter has been sick for eight months now, still no answers.

Doctors tell us it is all in her mind. She has been in a mental health unit for a month now.

They are giving her electric shock treatment for depression which I am concerned about.

She blacked out last September, now has weakness down her right side, has severe headaches, fatigue, etc.

I'm very concerned. God bless

Catherine

Thank you so much for your courage in standing up to the medical profession's ignorance of ME.

Having lived alone with severe ME for four years and having spent the last 18 months bed bound I was sickened to hear about the gross mistreatment Sophia received. Her story makes my own battles with doctors and social care services for a basic standard of care seem almost bearable in comparison - words I never imagined I would hear myself say!

As unbearable as the physical symptoms may be, harder still is the stigma and disbelief directed at sufferers from the very people who are paid to 'help' us.

ME is NOT psychological and no one would ever choose to live this way. If they were to experience the devastation of this illness, even for a day, doctors would never question its validity again. I hope now the welfare system will finally open its eyes and begin to take some action. It's just a travesty that hope for change had to come at the cost of a life.

I just don't want to hear what he's got to say any more.

Sarah

I read the story of Sophia and like many people felt a deep sadness, as well as anger that such ignorance about the illness is still prevalent amongst the medical profession.

I was diagnosed in 1989 with ME and since that time have changed doctors. My current doctor has repeatedly recommended me to see a psychiatrist and even when I did and the psychiatrist said there was nothing wrong with me my GP still wanted me to see another. When will they stop telling us it's all in our head?

I'm now in a position where I can't work because I don't feel well enough and the doctor won't sign me off sick so I can claim sickness benefit because he doesn't believe in ME/CFS. I've nowhere to live as I've had to move out of my house because I can't afford the mortgage and at the moment severely overdrawn at the bank. I can't change doctors because they all say they're full.

I can fully understand and empathise with the way Sophia felt. I've now stopped going to the GP and order my medication over the internet. I just don't want to hear what he's got to say any more.

Helena

Dear Criona,
Thank you just doesn't seem adequate but it's all I have.
Thank you for BELIEVING Sophia, Thank you for BELIEVING us with M.E.
When there are too many people treating us with disapproval and utter contempt, those who BELIEVE us are a sanctuary.
Thank you for so much.

Tiffy

First of all my heart goes out to you for the loss of your daughter and the unimaginable suffering she underwent.

I feel quite angry and frustrated on your behalf at the insensitivity and arrogance displayed by the social worker, psychiatrist and GPs as described in your story. They appear to have been incapable of offering sympathetic and necessary medical and emotional support to Sophia and of making her suffering worse by dismissing the evidence of her own experience and thus increasing her isolation. Their conduct as portrayed in your account violates normal standards of justice and basic human rights.

It was something of a relief to read that the police, ambulance staff and coroner showed a markedly different attitude towards you and were able to show the humanity so lacking in the members of the medical and nursing profession who had formerly been responsible for Sophia's care.

I think your experience highlights the need for a comprehensive list of professionals who are sympathetic to and understanding of ME so that other sufferers do not have to go through what Sophia went through.

I wish you all success in your attempts to receive recognition and appropriate compensation for the medical neglect of Sophia and also for your attempts to campaign for others in a similar position to your daughter.

I find your determination, courage and hard work in the face of the illness and subsequent loss of your daughter quite admirable.

Kind regards

Barbara

My 12 yr old son has CFS/ME.
He is not as ill as most and does have a small amount of life illness permitting!( nothing like what a lad his age should have but not as bad as many sufferers I've read about.

It scares the living daylights out me that any one could and was treated this way
and its happening in this world now!

Well done for taking her fight further and for the little people of this world.

I hope you win her fight for your peace mind and everyone who lives with CFS/ME.

God bless
Zana

Ignorance is bliss. Unless you are suffering from M.E. or CFIDS as is it sometimes referred to.

This is a world-wide epidemic and your daughter is the first documented hero. Bravo for the fight for her dignity and the courage you showed in the face of threat and humiliation.

My thanks to you for allowing her body to be studied...so that some knowledge might be gleaned for future victims of this devastating illness. Since the cause is currently not known any and all information will be a giant leap for the medical field.

I only hope that the barbaric treatment of M.E. sufferers will become a thing of the past because of your daughters passing and the gift you offered all of us.

Thank You

Barbara

I am utterly speechless, how can this happen? I cannot even imagine how Sophia's family must feel. I sincerely hope that all the work and fundraising that is being done will bring this dreadful disease to the forefront of the medical profession and that all GPs will have at least some understanding of how to help sufferers and their families.

Dear Criona,

It's the 25th November here in Australia, not sure if that's what it is in the UK right now, but that does make it the anniversary of Sophia's death down here at least.

I didn't know Sophia, I heard about her death through the grapevine at first, and later through sites like this one.

What happened to Sophia was horrible, wrong, terrifying.  I know the pain of losing loved ones (and the pain of anniversaries), but I can't even begin to imagine the pain of losing your daughter, so please accept my heartfelt sympathy and condolences. 

No one should have to experience what you and Sophia went through.

If (when?) it happens to me, I won't have parents to kick up and fight like you have fought.   I'm glad for Sophie that she had you.

And now you are making a difference for us all and I watch what you do with interest and hope.

I'm 40, I got ME/CFS (it mostly gets called CFS here) on 14 August 1998 and I've been sick ever since.  I'm watching my life slip away and I am eternally grateful to people such as yourself who can fight the fight on behalf of those of us who can't. 

All strength to you, and thanks.

Alison
xx

Dear Criona,
I too applaud your daughter Sophia for holding firm to what she knew was right for her.

As a mother myself (and a CFS/ME sufferer since 2003), I can only imagine your pain at the loss of your daughter. She sounds like someone I would have loved to share with.

My immediate thought to your story and that of Sophia's, was of how much I could relate to Sophia's wishes of not wanting to see another Dr. No matter HOW sick. Why?

One, they either don't believe you, or two, if they do (at least a little anyway), they don't TREAT you! So what good is it anyway?

I'm a 48 year old married sick women with CFS/ME - I also have 2 young children - I had a grounded career before illness struck for 24 years - so I speak from intelligence when I say the above comment. It sounds "ignorant" to most ears - but most people have no idea what it's like to live with this dreaded illness that can end your life that doctors don't believe in - that you're made to feel insecure and that you're making it up - or that you have that "attention getting" illness.

It's no wonder we don't want to see another doctor. It's simply too much energy to have to explain yourself - prove yourself sick - and even have to give them the definition of the illness in detail! I'm with Sophia all the way. She did the right thing. You did the right thing. She knew from her soul what was best for her and so did you. And that's the best you can do. Period. So don't let anyone ever let you feel differently.

P.S. My 10 year old daughter Sophie has dyslexia (as your Sophia) and my 13 year old daughter appears to be having symptoms of CFS/ME.

May your Sophia be resting in peace. She will live long now as her story will become part of important history.

Like many others I was shocked, deeply moved and angered by Sophia's story. I developed ME after becoming ill in India 8 years ago and like everyone with this horrible illness, have struggled against stupidity, ignorance and arrogance in medical circles and sadly society at large with regard to the attitudes towards this much misunderstood condition.

I have been moved to tears on many occasions when thinking of Sophia and the tragic waste of a precious life. She was the same age as me when she died and from what I can gather would be the sort of person I would seek out as friend which brings her plight further to home.

My husband and I run a support website for Christians with ME (www.cwme.co.uk) and all our members feel the same about her and are in total admiration for her brave family who have our complete support.

What happened to Sophia is a Human Rights issue and should be seen as such by the authorities. I pray that this book about her will help to raise public awareness of this illness which is all too often swept under the carpet in embarrassment by the medical world.

My thoughts and prayers are with Sophia's family as they battle on with great courage to see justice done.

My heart swells with pride at Criona's courage and strength to follow through with her complaints to the authorities when most people would have given up from anguish at their child's death. Most would try to just move on, try to forget the bad times and remember the good times.

It is easy to see where Sophia got her incredible courage and strength. I hope Criona knows that her fight for PWMEs worldwide in memory of Sophia is appreciated more than words can express.

I believe Sophia's death and Criona's persistence will have positive results for millions of patients around the world.

To Sophia's family,
I first read of your sister's sad death when I saw the inquest posted on the internet and I cried, ( I don't easily cry). She was so young and pretty and came across as being a lovely, thoughtful young woman. I could not believe that this kind of treatment could happen in 2006.

I have had ME 20yrs, been through the mill etc and I have written to a great many MPs, PMs, health authorities etc and just felt as if I have been wasting my time when this kind of thing happens. I do wish your mum all the very best in her fight for some redress at the way Sonia was treated.
All the very best and look after your mum.

I have just read some of the comments about my sister Sophia Mirza. Thank you all so much for the support you have shown my mum and Sophia also for telling us how this affects you.

In a few weeks time it will be the one year anniversary of my gorgeous and funny and talented sister's death. If you knew her before she got ill she was like a force of nature. Talented, funny, generous she had loads of friends and was very much a person who lived her life to the full. She had courage and was original and so much more.

M.E. was the cruellest thing to ever happen to Sophia. I will not go on about how much she suffered because it is an unbelievable amount. To top it all her illness was not recognised as a neurological disease and so there was the added burden of trying to get the authorities to understand the true nature of her illness. Unfortunately for us all Sophia suffered even more than was necessary. My amazing sister has paid with her life but she all she wanted was that if only one person was helped by her experience it would all have been worth it for her.

I am writing a book about Sophia. It is not just about her M.E although that will be addressed in the book. Sophia was not a victim she was a warrior. She took the bar of courage and didn't just raise it higher, she threw it into orbit. Sophia was an exceptional human being and her story is amazing. I am so proud of my sister and my mum and all the people who helped during Sophia's life and death and there are many unsung hero's to this story. My eldest brother also went above and beyond for our sister.

Just reading your comments and knowing that other people who have this ME are feeling less isolated because of Sophia is great. I am not sure how to go about getting the book published at the moment and am still writing the book but I would love to use some comments that I have read about my sister here. If anyone wants to leave a message about Sophia that I am free to put in my book about her can they say that its ok? Thank you very much.

Thank you again for your kind comments and love you have shown for my amazing sister.

Roisin xxx

My heart goes out to you Criona Wilson, mother of Sophia. Your brave decision to go public and to pursue this event after Sophia's death is highly appreciated and respected by myself, a fellow sufferer.
Most people would have wanted to go public after such barbaric treatment of their precious child, but would not have found the energy after all the pain and suffering that you have been through.
I can only thank you from the bottom of my heart for finding the energy and courage to do so.
My thoughts are with you and I am right behind you.

Sending you blessings and may Sophia rest in peace.

Dear Criona,
You are not alone in your fight for proper treatment for people with ME. Your decision to go public with Sophia's story and to take on the 'authorities' responsible for her mistreatment is brave.

Reading ME group is campaigning for local services and a letter published in our local paper included mention of Sophia Mirza and the dangers of not diagnosing and treating ME as a physical illness.

Thank you for caring about other people with ME,

Elaine

Dear IiME,
I just had to write to say that I am amazed at the courage that Mrs. Criona Wilson has shown following the sad death of her daughter, Sophia.
Apart from coping with her own personal grief she has, quite rightly, fought for justice on behalf of her daughter.
This is a heavy emotional burden for any one person to carry.
Therefore when I read that Mrs. Wilson is hoping that her fight will also help other ME sufferers, I feel truly humbled that at this difficult time in her life she is still able to think of others.
I would like to say "Thank you," to Mrs. Wilson and her family and I send my best wishes to them.

from
Caroline

May the beautiful Sophia be resting in glorious peace. x

When Sophia's death is viewed relative to Gulf-related illness, or Gulf War syndrome as it is commonly tagged, the time that she spent in Africa assumes crucial importance..... read here

I went to an article that was in a newspaper in the US. I had read about the horror of Sophia and her desperate family and of Sophia's ordeal of which I think her death was the gift of a horrible life that should never have happened. Her poor father was basically shunned, Sophia was treated as badly as Hitler treated his captives and all with the blessings of her country. I have had CFS/ME and FM for over 4 decades but was only DX'd in the late 90's.

The suggestions and hints of this being a functional thing stung me to the core. Now here we are 40 years later and they still think this does not exist.

Please pass on my heartfelt thanks to her Mum. Her Meridian interview was brilliant and I am sure all the work she has done will bear fruit

Thank you for your courage and determination on our behalf. I believe it could be one of the most significant steps forward for the acceptance and treatment of the disease. God bless you and comfort you.
 

I do hope that Criona wins the case against the medical profession as you know how 'they' cover up for each other. Will she need money to fight this as for he to win this case would really make doctors etc twice about how they treat ME sufferers, it would help get the illness recognised. Could a fund be set up in her daughters name because I cried when I read about what had happened to her as I felt that we had not moved on in 20yrs. Criona needs all the help and support that we can offer.
 

100% behind her all the way, as I'm sure, are ALL of the REAL ME community.