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Rememberance Day

1st JULY - 20TH AUGUST 2009


  1. Andy Burnham letter - Questioning why Sir Liam Donaldson Chief Medical Officer of England
     and Executive of the World Health Organisation (WHO) is failing to implement their rulings.
  2. 1st response
  3. Analysis
  4. 2nd response
  5. 25% M.E. group (1)
  6. To D Lepper (2)  (MP)
  7. Medical Research Council (3)
  8. Psychiatrist (4)
  9. Spinal Report (5)
10. W.H.O. clarification
11. WHO rulings
12. Sophia's Prism - A picture of the bureaucracy surrounding Sophia.


Mr Andy Burnham
Secretary of State for Health
House of Commons
London SW1A 0AA

Dear Mr Burnham,                                                                                                 1st July 2009

In 2005, my daughter 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 2006. (For more information see www.sophiaandme.org.uk). 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.

Nobody in the UK is acting to ensure that this situation does not happen again. Despite this being a 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 by me 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 explain to me:-

1)    Sir Liam Donaldson, the Chief Medical Officer of England and an advisor to 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?

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,

Yours sincerely,

Críona Wilson

    •    To avoid any loss, a copy of this letter has also been Emailed to you.





Ms Shelley Wilson                                                                                                                         Criona Wilson
Customer Services Centre                                                                                                               Brighton
Ministry of Health
House of Commons
SW1A 0AA                                                                                                                         1st August 2009

Dear Ms Wilson,

Thank you for replying to my letter which I sent to Andy Burnham. At the end of your letter you said that you hoped that your reply clarified the Department's position. In truth I can only say that it continued to obfuscate the facts for me, rather than clarifying them. In order for me to be able to understand what you are saying I shall quote your letter and then write my understanding of this, in red, beneath the paragraph.

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"I am very sorry to read of your daughter's death and can understand your wish to raise your concerns about her treatment and care. It would not be appropriate for the Department to comment on a clinical decision made in a specific case, but I note that you have raised the subject of CFS/ME in general with the Department previously and would like to take this opportunity to assure you again that the Government does recognise CFS/ME as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such."

If the doctors, psychiatrists, GMC, Sir Liam Donaldson as well as yourselves deem it 'not appropriate' to comment on individual situations, then, please tell me, who can? All of these 'individual sufferers' of ME combine to make up the 240,000 suffering from the disease in this country. I would be grateful if you would tell me who is responsible? Who is accountable?

By referring to ME as a 'distressing condition' and 'managing it', you imply that ME is not the severe physical disease that it is.

As you may know, the National Institute for Health and Clinical Excellence (NICE) recently published clinical guidelines on the diagnosis and management of CFS/ME. Clinical guidelines are recommendations by NICE on the appropriate treatment and care of people with specific diseases or conditions within the NHS. They are based on a thorough, systematic review of the best available evidence. NICE is an independent body that develops its guidance without Government intervention. You may, therefore, wish to raise your concerns directly with NICE's Chief Executive, Andrew Dillon: www.nice.org.uk.

As regards your understanding that the NICE guidelines for ME are based on a "thorough systematic review of the best available evidence", I believe that you have been misinformed. If you read the enclosed pages (1) about the trials, you will realise just how few and flawed they were. Even your own letter to my MP David Lepper in 2006 (2) states how closely you work with the Medical Research Council (MRC), allocating £2.1 million to the research of PACE and £830K to FINE.

You also named the doctors involved in carrying out these 'trials' as being Dr Peter White (Psychiatrist), Dr Michael Sharpe (Psychiatrist), Dr Trudie Chalder (Psychotherapist), Dr Alison Wearden (Psychologist) and Professor Morris (Psychiatrist). These same doctors 'advise' the Government as regards ME. I am not aware of any neurologists being involved in any trials. To me, this does not even make common sense: to employ psychiatrists, psychologists and psychotherapists to investigate a physical neurological disease.

In their letter, dated 2005, (3) sent to me by the MRC via my MP, they state that "high quality research in particularly areas of strategic importance may be given priority in competition for funds, and this is the case in CFS/ME". It therefore seems beyond doubt that this body together with your own Department concurs in the fact that research into ME is best done by the psychiatrists, despite the fact that the World Health Organisation (WHO) classifies it as a physical neurological disease G93.3.

You mention the World Health Organization (WHO). The WHO classifies CFS/ME as a neurological disease, and in the International Classification of Diseases it is coded G93.3. The Department has long recognised the WHO classification of CFS/ME, and this is the definition used in the Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, which was published by the Department of Health in October 2006.

Given that you say the Department recognises the WHO's classification of ME as a neurological disease, i.e. physical, why then does the Department, by using wording such as 'Management of Chronic Fatigue Syndrome' etc still sideline the fact that ME is a physical disease, and so continue to misinform the public?

As you were advised in previous correspondence, graded exercise therapy and cognitive behaviour therapy (CBT) were included in the research trial PACE (Pacing, Activity and Cognitive behaviour therapy: a randomised Evaluation), a large scale UK-wide trial to evaluate the value of adding specific therapies to patients' usual medical care provided in specialist clinics. These approaches were shown to benefit some people, but previous trials were criticised for being too small or selective to evaluate their effectiveness definitively. I should emphasise that it is important that this research is done, as, while some patients have been helped, it is the case that some have reported a worsening of symptoms when these treatments have been applied outside of research settings.

All patients recruited to the PACE trial received detailed patient information literature and signed a consent form to confirm that they understood the full details and implications of taking part in the trial. This trial was supervised by an independent steering committee and data monitoring and ethics committee. There was no question of compulsion.

I have not written to your department previously, although I have written a number of times to my MP who forwarded your letter to me. Whilst numerous words are given to Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), it is obvious by its absence that no Government money is earmarked for research into the physical genesis and treatment of ME. Were this to be the case for those suffering from cancer, AIDS and many other physical diseases, there would, quite understandably, be an outcry.

CBT, which is often – wrongly – described as psychotherapy, is in fact a form of psychological rehabilitation and there is good research evidence for its effectiveness in other physical illnesses such as heart disease and chronic low back pain.

As you rightly said, "CBT is a form of psychological rehabilitation", which is defined in the dictionary as "pertaining to that which is mental in origin". I find it impossible to understand how the Department would condone such so called ‘treatment’ for such a severe polio-like physical disease. All people who are ill or have surgery have to pace themselves, this is so that they do not overdo things and thus hinder their recovery. To use this as the correct way of ‘curing’ ME , without having biomedical investigations of the disease, is quite unbelievable.

Six months before my daughter Sophia was sectioned, her GP asked the psychiatrist to have me, Sophia’s mother, sectioned in a mental hospital (4); I understood this was because I supported Sophia in agreeing with the WHO, that ME is a physical disease. I was not a patient in that practice. I do not understand how a carer for a severely ill patient could be considered for sectioning, other than allowing those same doctors a free rein, to do as they will, without any accountability.

When Sophia died, a post mortem was carried out which showed no cause of death. Simon Lawrence from the 25% ME group asked if we would allow her spine to be sent for research; we agreed. This showed categorically that Sophia’s spine contained a major infection which had caused her numerous severe symptoms (5). If biomedical research is not carried out, there will be many others with ME who will suffer and die in agony as did Sophia.

As you have also been advised, the Department funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at https://portal.nihr.ac.uk. Some of these projects receive external funding from research councils and charities.

You mention vast amounts of money in general. I know of around £11 million which has been spent on clinics delivering CBT and GET and where this money has come to an end some of these clinics are no longer functioning. I do not know of one penny that has ever gone to the biomedical research of ME.

There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes and possible therapies. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.

You are aware that the Medical Research Council (MRC) is one of the main agencies through which the Government supports biomedical research and remains committed to funding scientific research into all aspects of CFS/ME, including evaluations of other treatments and studies into the biological basis of the condition. The MRC always welcomes high-quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding. Awards are made according to their scientific quality.

I would question that such flawed and small scale research on a psychological basis could, in any way, be described as "Government supports biomedical research and remains committed to funding scientific research into all aspects of ME"……….and that "Awards are made according to their scientific quality". This is stretching the bounds of credibility too far. I would appreciate details of any research of a biomedical nature into ME that has been granted.

Finally, you may know that funding for CFS/ME services is a local matter for Strategic Health Authorities and Primary Care Trusts. The National Service Framework (NSF) for Long-term Conditions, published in March 2005, sets out a clear vision of how health and social care organisations can improve the quality, consistency and responsiveness of their services and help improve the lives of people with long-term conditions, including CFS/ME. NHS organisations are expected to demonstrate that they are making progress towards achieving the level of service quality described in the NSF.

It is difficult to understand how such a gravely debilitating disease, such as ME is not being highlighted at a national level, but relegated to local level where it may or may not be addressed. You speak about it as a 'condition', thus allowing others to disbelieve the severity of this terrible disease. It is still being 'managed' whilst other equally debilitating disease, such as polio, cancer and swine flu are actively being addressed

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I am at a loss as to understand how Sir Liam Donaldson CMO, who is also an executive of the World Health Organisation, and thereby required to implement it’s rulings, still stands by and does nothing to stop the abuse by some psychiatrists and doctors as well as the General Medical Council, of patients suffering from ME. Even the Department of Health, through its silence condones his non-action. I do believe that by allowing such cruel inhumane practices to continue he is failing both in his duty as Chief Medical Officer and as an Executive of the World Health Organisation. I believe that this is criminal. After all Niemoller (POEM) rightly made the point that people who stood by and did nothing, allow such inhumanity to succeed.

I would still appreciate clarification of what Sir Liam Donaldson believes as regards to the disease ME. Can you tell me what is he planning to do to address the plight of thousands of children and adults suffering from this serious neurological disease, who at best, are offered no help, while at worst face being incarcerated in a mental hospital with no redress.

In conclusion, my understanding of your letter, which you say is the view of the Department of Health can only lead me to the belief that whilst giving lip-service to the rulings of the World Health Organisation which states that ME is a physical disease G93.3, the Department is happy to not only allow ME to be 'treated' as a mental illness, but to ignore the WHO classification.

I look forward to hearing from you.
Yours sincerely

Críona Wilson


"First they came for the Communists, and I didn't speak up, because I wasn't a Communist.
Then they came for the sick, the so-called incurables, and I didn't speak up, because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up, because I wasn't a Jew.
Then they came for me, and by that time there was no one left to speak up for me."
Niemoller 1946

















In Spring 2009 I wrote and phoned to various members of The World Health Organisation (WHO). The answers I received did not make sense. In May I wrote a letter to Dr Chan, Managing Director of the WHO. Earlier this month, the WHO suggested that I get in touch with the Ministry of Health, which I had already done. I asked Andy Burnham:-

"1) Sir Liam Donaldson, the Chief Medical Officer of England and an advisor to 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?

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 received an e-mail from the Department of Health purporting to clarify certain 'facts' about ME. However, in so doing, they failed / refused to answer the original questions. I did not understand their convoluted ‘explanations’ and told them so. In turn, this letter was answered by a different person who, once again, appeared to waffle at length about issues I had not questioned, yet ignored the pertinent questions.

According to the WHO's Constitution, their rulings take precedence over and above that of the countries who contribute to them; England is one of them. Whilst the WHO guidance on swine flu (so far having less effect on the population than seasonal flu) is being implemented, guidance on ME which affects hundreds of thousands with devastating consequences for life, is actively ignored – why ?

As an executive of the WHO, Sir Liam Donaldson is duty bound to implement their rulings, but chooses not to do so; he has knowingly ignored his duties. I believe that Sir Liam Donaldson is committing a criminal act. Whether he likes it or not, the buck stops with him.

The techniques used for not addressing and correcting a situation appear to follow standard procedures:-

1) Failing to tell the truth. 2) Convoluted machinations about issues that were never part of the questions. 3) SILENCE regarding the conduct of those responsible and the inevitable silence through the written word.

Because of such mendacity and silences my daughter Sophia, suffered agonies beyond belief and finally died. How many more patients suffering from ME must continue to endure such an inhumane sentence?

Críona Wilson

September 2009


2009    World Health Organisation (WHO) – Dr Chan.

2007-09    Executive of WHO – Sir Liam Donaldson.

1997-2009    Ministers of Health – Alan Johnson and Andy Burnham.

1997-2009    Chief Medical Officer – Sir Liam Donaldson.

1997-2009    Wessely psychiatric school, who advise the Government on ME.

2007    Baroness Scotland – did not deal with such issues.

2007    Lord Goldsmith – did not deal with such issues.

2006-2007    General Medical Council (GMC) examined complaints against the 6 doctors – they                         were cleared. They employed psychiatrists as their 'specialists'.

2006-2007    Social Services examined the complaint against the social worker- she was cleared.

2006 June    Sophia’s Inquest – result: she died from ME.

2006    Independent research on Sophia’s spine – positive proof of infection.

2005    post mortem – no cause of death identified.

2005    November 25th - Sophia died. The 3rd GP, Dr Clarke, refused to visit to confirm her death             as she too, unbeknown to us, had struck Sophia off her list.             

2004    Legal aid refused – “no significant human rights issues.”

2003    August 8th - Although no longer her GP,Dr Firth removed Sophia from her practice.

2003    July 23rd –Sophia was released from the mental hospital by a Tribunal.

2003    July 11th – Police smashed down Sophia’s front door in order to enable Sophia's ex G.P, the psychiatrist and the social worker to forcibly remove her from her home and incarcerate her in a mental hospital.            

2003    June 23rd – the social worker, Catherine Connolly, lied under oath,therby committing             perjury, in order to ensure that Sophia was 'sectioned'in a mental hospital.             

2003    June - Chief Executive of Brighton Hospital, Dr Rosenberg, would not answer the letters             sent him.

2003    May 21st – The Court Manager ignored the letters sent regarding Sophia’s imminent illegal             sectioning.

2002    Dec 9th The psychiatrist, Dr Baginski, threatened to ‘section’ Sophia if she did not get              better within six months or, if she refused to enter the Romford Clinic.

2003    Dr Firth asked for Sophia’s mother, who was her carer, to be sectioned.

2002    Dr Firth finally secured a psychiatrist, Dr Baginski, who would agree with her i.e. that ME               was a mental illness.                         

2000 – 2002    Dr Firth GP asked a number of psychiatrists to become involved with Sophia’s                           case. They refused.

2000    Sophia is officially diagnosed with Myalgic Encephalomyelitis (ME) by Dr Hartley.

1999    Sept. - Sophia got ‘flu’. By December she was bed-bound for 95% of the time.