In the House of Lords yesterday…

June 3, 2008

Representatives from BRAME (Christine and Tanya Harrison) and The ME Association were present ‘Below the Bar' in the House of Lords on Monday 2 June to listen to a series of questions to Health Minister, Lord Darzi, on the subject of ME/CFS.
There was a very good attendance, including some well known parliamentarians, from all sides of the House of Lords.

Thanks to the Countess of Mar for initiating this mini debate and extracting from Lord Darzi a very clear statement about the government's position on the classification of ME/CFS, and to Baroness Howe for raising the issue of why the Royal College of General Practitioners are classifying CFS as a mental health disorder.  The reply from Lord Darzi – ‘I will encourage the Royal College of General Practitioners to look at the WHO classification, which, as I said earlier, is that it is a neurological rather than mental condition' – is very encouraging.  For exchange of correspondence between MEA and RCGP on this issue see here

A full transcript of the House of Lords Questions and Answers follows. 

Monday, 2 June 2008.

      The House met at half-past two: the LORD SPEAKER on the Woolsack.

Prayers—Read by the Lord Bishop of Portsmouth.

Introduction: Lord Mogg

Lord Mogg—Sir John Frederick Mogg KCMG, having been created Baron Mogg, of Queen’s Park in the County of East Sussex, for life, was introduced between the Lord Bassam of Brighton and the Lord Brittan of Spennithorne, and made the solemn affirmation.

Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

2.43 pm

The Countess of Mar asked Her Majesty’s Government:

Whether the current NHS review will include consideration of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a long-term neurological condition.

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): My Lords, the Government recognise that CFS/ME is a poorly understood condition that can be very distressing to patients, their families and carers. The long-term conditions pathway is one of the care pathways that strategic health authorities are examining as part of the NHS next stage review. The review, which is being led by local multidisciplinary working groups, will increase awareness and ensure better care for people with CFS/ME and will help to support local delivery of the NSF for long-term neurological conditions.

The Countess of Mar: My Lords, I thank the Minister for that reply. Does he appreciate that, despite the fact that it has been 40 years since the World Health Organisation recognised ME as a neurological disease and 20 years since the Department of Health did so, adults are still sectioned or deemed as lacking in capacity and children whose parents are blamed for their illness are put on the at-risk register or are made wards of court, with people from both these groups forcibly put into mental hospitals? This has been described to me as abuse by professionals. What has been the outcome of the CMO’s 2002 recommendations on the £8.5 million supposedly spent on CFS/ME, which has apparently come to nothing, and what will happen in the future?

Lord Darzi of Denham: My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition of an unknown cause. My ministerial colleague Ann Keen reaffirmed that position at the meeting of the All-Party Parliamentary Group on ME in January of this year. Subsequent to the CMO’s report, the Government allocated funding of £8.5 million for two years, 2004–05 and 2005–06, to set up specialist CFS/ME services where none existed previously. These centres, of which there are 13 across the country, would improve services for those with CFS/ME.

Baroness Tonge: My Lords, when I was a student, I had a professor who, when asked the cause of a very difficult disease, would usually reply, “Nobody knows, tiddly-pom”. I suspect that ME falls into the “nobody knows” category. It is welcome news that pathways are being set up to look at this condition and to decide what is to be done in the health service, but how long will it be before the condition is taken seriously and protocols are in place to deal with the very real consequences for patients of this disease?

Lord Darzi of Denham: My Lords, I thank the noble Baroness for acknowledging that for many years there has been a heated debate about CFS/ME among researchers, practitioners and patients. In fact, few illnesses have been discussed so extensively. The underlying issue is whether more research and development should be undertaken in this field not just on the symptomatology but on a diagnostic test so that we can at least plan different treatment protocols. In August 2007, NICE looked at the evidence relating to treatment protocols and recommended cognitive behavioural therapy and graded exercise therapy, as there was some evidence to support their suitability in the treatment of this condition.

Lord Swinfen: My Lords, so far as I could hear, the Minister failed to respond to the noble Countess’s point on patients with this disease being sectioned and children being put into care as a result. Would he be good enough to do so now?

Lord Darzi of Denham: My Lords, I have acknowledged that CFS/ME is a neurological condition, but I am not aware of the circumstances in which associated illnesses might require sectioning. The noble Countess wrote to me about one specific case and I shall respond in relation to that.

Baroness Howe of Idlicote: My Lords, can the Minister explain to the House why the Royal College of General Practitioners continues to insist on categorising CFS as a mental illness?

Lord Darzi of Denham: My Lords, the Government have made it clear that they consider that CFS/ME should be classified as a neurological condition. It is for professional bodies to look at the evidence base and I will encourage the Royal College of General Practitioners to look at the WHO classification, which, as I said earlier, is that it is a neurological rather than a mental condition.

Earl Howe: My Lords, is the Minister aware of the work of the charity Tymes Trust—I declare an interest as a patron—which specialises in supporting young people with ME, particularly with regard to their educational needs? Does he agree that recognition of CFS/ME by teachers, social workers and, indeed, GPs is of fundamental importance and that imaginative ways need to be found to help children with ME who cannot cope with mainstream schooling?

Lord Darzi of Denham: My Lords, I am aware of the charitable contributions in this important area. In fact, many charities in this field have contributed to the development of NICE guidelines specifically in relation to children. I could not agree more with the noble Earl in emphasising the importance of engaging the family, the need for a diagnosis to be confirmed by a paediatrician and the need to support a return to education. These guidelines, which were issued as part of the NICE guidelines, have been welcomed by the Association of Young People with ME and provide a positive lever in improving services for children and young people with CFS/ME.

Lord Elystan-Morgan: My Lords, is it not the case that under Section 31 of the Children Act 1989 a child can be placed in care only if he or she is suffering significant harm or is at risk of significant harm and that therefore any connection with ME can only be on the basis of a misdiagnosis?

Lord Darzi of Denham: My Lords, I am very grateful for that intervention.

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