Important note: Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research. The HFME not only does not support the concept of 'ME/CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis.I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail. I have written to two Attorney Generals, numerous MPs and solicitors - again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is accountable.
I have therefore decided to publish all letters and communications appertaining to my daughter's ordeal at the hands of the authorities, in an effort to ensure that this should never happen again to someone suffering from ME. I hope that the doctors and social workers involved in my daughter's care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.
Criona Wilson's lobby your MP campaign re WHO.
Dear Your MP,
Who Audits the WHO?
Myalgic Encephalomyelitis (ME) affects over 240,000 people in the UK and a quarter of these people are so badly affected that they are housebound or bedbound. The illness is neurological; it affects all systems of the body and commonly affects many young people. M.E. has been classified by The World Health Organisation (WHO) as a physical disease since 1969.
In 2005, a young woman called Sophia Mirza died after doctors refused to recognise her ME as a serious physical disease and instead had her "sectioned" in a mental hospital because she insisted that M.E. was a physical disease and not a mental illness. She never recovered from her incarceration and later died. Examination of her spinal cord after death confirmed she was physically ill and this was reflected by the Coroner at her inquest in 2007. (For more information see www.sophiaandme.org.uk )
Nobody in the UK is acting to ensure that this situation does not happen again. Despite this being an disease which is classified by the WHO as neurological, NICE (who are supposedly "mandated" to follow WHO classifications, but do not), have produced Guidelines for doctors that concentrate only on mental health.
Recently, attention has been focussed on the wrongdoings of our financial institutions and more recently on our Parliamentary system. Both these institutions were regarded as sacrosanct and above question. Time has proven our confidence in those institutions to be misplaced.
Now it is time to look critically at the WHO which last year received a contribution of over £20,000,000 from the U.K. for 2009.
Officials at the WHO have been repeatedly asked to explain what powers they have to ensure that signatories abide by their classification system and what sanctions they can and do impose if member states fail to do so. They have failed to answer these questions.
In the case of ME can you please ask the Secretary Of State for Health to explain:
1) Sir Liam Donaldson, the Chief Medical Officer of the U.K for the past ten years, is also an executive of the WHO. He has done nothing to ensure that M.E. is seen and treated as a physical disease in the UK; Why not?
2) Why NICE has not followed the WHO classification of ME as a neurological disease and how this can possibly be justified;
3) Why this physical disease is still being "managed" with purely psychological therapies with known adverse consequences;
4) Sir Liam apparently has no time to engage with the 240, 000 sufferers of this illness and yet can instantly devote his time and £7million of our money to an exaggerated influenza outbreak. How can this be?
My understanding of the situation is that our Health Ministry should take a lead from the World Health Organisation. When they ignore WHO Guidance and classification as they do in the case of ME, what remedy do we, patients and members of the public, have?
I look forward to your timely response,
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.
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 Críona Wilson (Sophia’s mother)
Read Sophia’s story by her sister, Roisin Mirza (seeking publication) “Treating a physical disease with mental health treatments is just that, mental.”
This book is about vastly more than Sophia’s six year battle with ME and what happened to her in the health care system, and what her carers went through. ‘Sophia and ME’ is not so much about what ME did to my sister, it was what Sophia did with her ME. Her journey was as much a spiritual journey as it was a physical battle. I have used flash back scenario’s in the book to share what my sister was like before she became ill with M.E,. including the year we spent travelling together in Africa.
‘Sophia and ME’ also includes diary excerpts of the last diary my sister was ever able to keep and it clearly shows her bewildered descent into the hell of ME. This book also shows Soph's amazing spirit and how against all the odds and DESPITE being un-believed by the medical profession Sophia did not turn into a bitter person, she actually turned all her pain and frustration and isolation into love of others, and her compassion was extraordinary.
The Story of Sophia and M.E. (from the Invest in M.E. website)
This is the heartbreaking story of Sophia, who through medical maltreatment and neglect, died of M.E. in 2005. This story illustrates all too tragically that M.E. is a serious neurological illness which is too often dismissed out of hand by doctors; sometimes with devastating consequences. An excerpt:
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.
The result of the inquest into the death of Sophia Mirza (on Invest in ME)
Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006 [On the inquest into the death or Sophia Mirza.]
'General Medical Council’s “duties of a doctor” (2001) state that doctors must make the care of the patient their first concern and they must not ‘give or recommend to patients any investigation or treatment which (they) know is not in their best interests, nor withhold appropriate treatments’. This was acknowledged on 15th June 2006 by Dr Susan Benbow of The Royal College of Psychiatrists in the Daily Telegraph. The GMC stipulations are clear enough, so why then are sufferers from ME/CFS excluded from such protection?
There can be few people in the UK ME community who have not by now heard the results of the inquest into the tragic death from ME/CFS of 32 year-old Sophia Mirza, the beloved daughter of Criona Wilson from Brighton. Although severely sick with medically diagnosed ME/CFS, Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act. '
[Note that this site does not support the use of the term/concept of 'ME/CFS']
Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006 [On the inquest into the death or Sophia Mirza.]