Parliamentary Questions to Minister for Care Services | 24 April 2012

The Minister for Care Services, Paul Burstow MP, responded to a series of written questions about ME/CFS from Labour MPs George Howarth (Knowsley) and David Anderson (Blaydon) on Tuesday, 24 April 2012

Mr Anderson: To ask the Secretary of State for Health what research his Department has commissioned on myalgic encephalomyelitis in the last three years.

In his written answer, Paul Burstow replied:

The following projects funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme started in the last three years:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) interventions within the primary care setting: developing resources for support and self-management in primary care; and

Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with CFS/ME: a randomised controlled trial in secondary care.

In addition, the NIHR is funding a clinician scientist award on evidence based prevention, identification and treatment of CFS/ME in children and young people.

Mr George Howarth: To ask the Secretary of State for Health if he will publish each paper held by his Department on research evidence on myalgic encephalomyelitis in each of the last 20 years. [104435]

Paul Burstow:

It has been a long-standing principle of governance for health and social care research that there should be open access to research findings in all therapeutic areas including chronic fatigue syndrome/myalgic encephalomyelitis, once these findings have been subjected to appropriate scientific review.

The Department’s National Institute for Health Research (NIHR) has published a policy statement on open access to research. This is available on the NIHR website at:

www.nihr.ac.uk/research/Pages/Research_Open_Access_Policy_Statement.aspx

Mr George Howarth: To ask the Secretary of State for Health what programmes his Department has in place to raise medical awareness of myalgic encephalomyelitis.

Paul Burstow:

The National Institute for Health and Clinical Excellence has published guidelines on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis. There is also information available on the NHS evidence website, with a number of resources published by clinicians, charities and professional organisations.

Mr George Howarth: To ask the Secretary of State for Health whether his Department classifies myalgic encephalomyelitis as a neurological condition.

Paul Burstow:

The Department classes chronic fatigue syndrome/myalgic encephalomyelitis as a long-term neurological disease of unknown cause.

Mr George Howarth: To ask the Secretary of State for Health how many people (a) were diagnosed with and (b) died from myalgic encephalomyelitis in each year since 2005.

Paul Burstow:

This information is not available, as it is not collected centrally.

Mr George Howarth: To ask the Secretary of State for Health whether his Department considers the Perrin Technique to be an efficacious treatment for the symptoms of myalgic encephalomyelitis; and whether it is available as an NHS treatment.

Paul Burstow:

Decisions on the commissioning of complementary and alternative therapies and treatments on the national health service are a matter for the NHS locally. The National Institute for Health and Clinical Excellence clinical guideline suggests there is insufficient evidence to demonstrate that complementary therapies are effective treatments for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) so do not recommend their use. However, the guideline acknowledges that some people with CFS/ME choose to use complementary therapies for symptom control and find them helpful.

It is the responsibility of individual clinicians to decide whether a particular treatment option is appropriate for an individual patient, in discussion with the patient and based on the available evidence.

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