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We have had many email responses to the website since April '08 and have kindly been given permission to print the following.
From: Amanda Smart :
30 April 2008.
I have just read your website about Sophia and your family's struggle against professional ignorance
I and my son are both sufferers of M.E.
I just wanted to say thank you for sharing your story
I found out about the website on our local groups website and will highlight your site each and every time I face
an uninformed opinion about this rotten disease
From:Dr Derek Enlander
28 April 2008
You have my sincere condolences, perhaps in some way, her life can rectify the wrongs that are prevalent.
Dr Derek Enlander
From: Jacqui Butterworth
30 April 2008
One Saturday morning I opened my PC and read of Sophie's treatment and cried, something I havent done for years (21yrs of ME/Lyme disease seemed to make me unable to feel emotion) Such a lovely, beautyful daughter.
I have been campaigning for nearly 20yrs for ME/Lyme disease sufferers and could not believe this kind of thing could happen in 2007. I have 4 children and would have been hearbroken if one had been treated like Sophie was. My heart goes out to you and I hope you have found some peace, if that is possible. I wish you well with what you are doing but dont wear yourself out, you must make time for you.
Love and best wishes,
From: Jane Colley
29 April 2008
Thank you so much for creating your website. I believe that what you are doing is so very important.
My own daughter had an ME diagnosis for five years. She started to be ill at the age of nine and at fourteen was told it was ME. By the time she was 17 she could no longer go to school, and was having difficulty standing up and swallowing. I knew very well that she had a physical illness, yet I kept being told that her illness was psychosomatic. I was very fortunate in that I was told about the Breakspear Hospital. There Elizabeth underwent a great number of tests and was found to be very ill. Lyme disease was one of the problems she had.
She underwent six months of treatment and further treatment in Germany the following year. She is now leading a normal life and has just spent the winter working in a restaurant in the French Alps. She got her life back.
At the time we found out about the Breakspear Hospital, her ME consultant who was kind, had absolutely no idea why she had become so very ill. I knew all along that I had to keep her out of the hands of the psychiatrists.
I am now a member of a group called Eurolyme. There is a young woman who belongs to this group who is extremely ill. She has sought help for her problems which are many. She has a lot of test results that show she is physically ill. Several weeks ago she was sectioned against her will. It causes so much distress to hear of another young woman being put through this sort of mental torture.
Sophia was a very beautiful and extremely brave young woman and I know that she would be so very proud of you for continuing to fight her corner.
With very best wishes
From: Lia Metz
04 May 2008
With rising sadness and rage I read all the documents and letters of the “docters”, that found themselves capable of treating Sophia. Oh my God, how she must have suffered form this awful illness and the denial of her pain and exhaustion. And you as a mom, you must have felt en still feel so powerless against the prepossessed, heartless and ignorent authorities. ME is absolutely a physical illness, no doubt about that. There are plenty scientific research articles known about the disorders found in neurological and biochemical markers. How can one deny these? I’m so sorry your beautiful daughters’ life ended this way. And I wish you all the strength you need to keep on fighting for justice, as well as for acknowledgment of ME. Your case should be appealed in the EU-Court to make a statement. Take care of yourself, with love and respect,
Lia E.B.W. Metz, dir. MEDIVERA
From: Paul Beith
29 April 2008
I saw your site about Sophie. I am so sorry that you are suffering the worst tragedy possible.
Thank you for making the site inspite of how upset you must feel.
Valuable resources and lives are squandered to help interest groups, such as psychiatrists. At the same time, when I tell authorities that location has a huge effect on ME people, they will not spend one minute to even discuss it.
I feel strongly that your site will eventually help alert the public to the crimes being committed against ME people. Thank you.
From: Sandi Harrington
29 April 2008
I am writing you concerning the loss of your most beautiful daughter, Sophia. Please accept my condolences for your great loss. Only the abuses you describe could have resulted in her quick demise. I cannot fully express my thankfulness to you for being such an intelligent caring mother who so loved and fought for Sophia, and your continued fight for us after her death. May your efforts be fruitful and be rewarded with much success!
I also suffer from severe M.E., but not yet as severe as Sophia‘s. Before I do die of heart or acute kidney failure, I hope to invest in cryonic technology, freezing myself until this world offers a real hope for us, and people have become more understanding. Until now, I have merely survived, never having had an adult life. Caring parents are not always the case. My paranoid narcissistic mother was unable to even believe that her daughter was ill, let alone so severely ill. Someone else’s child was ill, not hers! Diabetes was a terrible disease, not mine, though I was cured of diabetes - DM-II, not long after suffering from and being diagnosed with it, but she remained oblivious to that fact. Dad was aspergic and likewise had no empathy. I’ve merely survived since 03 January 1975 when I came down with what I initially considered “the flu”. But, this flu never went away and by summer I was paralyzed each day for five months. You know the story. Devastatingly, Mom in her own little self-absorbed world, and with Dad in his autistic world, were self-contained. They didn’t need me when I was well, let alone after I became ill. They never even called or visited until years later, and in reality they were merely visiting to see a house, not because she cared. Dad cared some, but much too little, and way too late. Yet, I often called and we visited them! Sadly, there are many diseases and conditions in the world and they are not as reprehensible as the governmental and medical authorities who have perpetrated this fraud upon our families and the world. I continued to love my parents, though heart-broken, understanding they had their own limitations. So, I cry in relief because you are such a refreshing breathe of fresh air! Will you adopt me? Just kidding! I hope you are receiving many responses today.
The medical establishment used to treat diabetics this way before ants were observed enjoying the sugar in a patient’s urine. Unfortunately, M.E. is a greater problem, neurologic, systemic, and not as easily detected. I live in Rancho Palos Verdes in Los Angeles County, California, USA. I am fifty-six and have been ill for thirty-three years. My scientific researcher and doctor, Dr. John Chia of I.D. MED in Torrance, Los Angeles County, California, USA, says I have chronic and persistent Coxsackie B-2 and Coxsackie B-4 of the polio family which are causing my "CFS" which he recognizes is actually Myalgic Encephalomyalitis. I have found hope in Dr. John Chia. His son, Andrew, was very ill with M.E., but is now feeling better and helps his father with their research. He says that he is among those called “dissidents“, for he has found the Coxsackie virus of the polio family, in particular, in our stomachs. Cultures have been grown and these have been sent to the University of Nebraska. Researchers there have also grown cultures using these biopsies. He feels that those less ill have a less serious virus than Coxsackie. Of course, Sophia’s malaria and apparent meningitis are certainly suspect as causative factors. How often do our doctors order an endoscopy to obtain biopsies of our stomachs where our enteroviruses live?
Though my PCP at that time was otherwise clueless and took a few years to understand, at last he finally referred me to this wonderful doctor. I feel so blessed to be able to have Dr. Chia as my doctor. It wasn’t until then that Dr. Chia mentioned undercooked shellfish as the possible source of my coxsackie virus. Only then did I realize the connection that shortly before I became ill I had eaten boullibaise in a famous ship’s restaurant in Los Angeles County! I had never been able to fit the former EBV diagnosis into my life. They had undercooked the crab or other shellfish in the soup! If my parents had just helped me in 1975! I later determined why my husband at that time did not help me, he was a sociopath with the same problem, no empathy. Dr. Chia has expressed his frustration in the fact that there are already so many medicines to help AIDS and cytomegalovirus patients, but not one for coxsackie virus! Please see this article, and these others if you have time and desire.
http://www.medopedia.com/chronic-fatigue-syndrome-stomach-virus *Please click on the Journal of Clinical Pathology link in the first *paragraph to see Dr. Chia’s articles. I have also found this very helpful book at Google Books Viral Disease, By P. J. Vinken, G. W. Bruyn, Harold L. Klawans, Robert R. McKendall
I was able to access this book via a Google Search, yielding the results on this first page of results when I desired to learn more about meningitis and malaria as enterovirus types: http://www.google.com/search?hl=en&as_q=meningitis+malaria+enterovirus&as_epq=&as_oq=&as_eq=&num=20&lr=&as
If you click on this result, Viral Disease - Google Books Result, you’ll be taken to the book itself, rather than just an abstract by accessing it from a home or search page. I tend to think this is the case. Hopefully, we will be able to read more than just a few pages. We need to help each other to find answers for our cause. Dr. Chia will be a speaker at this year’s “Invest in M.E.” conference in London.
My cardiologist Dr. Gary Kissel, respects and concurs with Dr. Chia that the now chronic pain in my chest is being caused by the Coxsackie virus in my heart. Of course, I have also suffered from nearly all the symptoms that Sophia suffered from. I cannot express the degree to which I appreciate the fact that you don't desire others to suffer as she did. I, too, after suffering decades, feel the same way. We must change this situation so newer and future patients receive the proper diagnosis and treatment. Of course, it is those who are well that can bring about real change. However, since we've had the internet and especially laptops and e-mail, this situation is changing, too. We are able to communicate while lying down.
Here, too, we are sent to psychiatrists initially, a very dangerous waste of our health, time, and energy. Though my psychiatrist was clueless concerning M.E., he was able to help me with my sleep which presents with the same problems as Sophia’s.
It wasn’t until Dr. Chia prescribed fentanyl patches, as well as Vicodin and Neurontin, to give me relief from the pain that I was finally able to be comfortable enough to sleep finally after decades of most limited, disrupted sleep and our delayed circadian cycles. I’ve been prescribed medicines such as Elavil, Temazepam, Paxil and Trazadone as well. These have been helpful over the years, though Elavil causes weight gain. However, I have recently found that larger doses of vitamin B-12 amazingly help both my adrenals, energy level and stamina, as well as reducing the level of pain! May your own pain be eased by making your daughter’s life and death become more meaningful by empowering the helpless, her fellow sufferers. And may God bless your loving efforts! We all appreciate it.
My heartfelt appreciation,
Sandi A. Harrington
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