"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.

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.

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

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