Swire Stages Lyme Disease Seminar
10 November 2008
A one day seminar on Lyme disease was held at the House of Commons today by a local MP in a bid to raise public awareness.
The seminar entitled ‘Evidence for change’ was organised and chaired by East Devon MP Hugo Swire and was inspired by a constituent from Sidmouth who suffers from the disease.
Mrs Stella Huyshe-Shires contracted the disease in 1999 but was not diagnosed until 2002 and then only because she insisted on a blood test and a referral to a neurologist. She came to Mr Swire because she was concerned that knowledge of the affliction amongst GPs and consultants was insufficient.
Lyme borreliosis is an infection caused by spiral-shaped bacteria called Borrelia burgdorferi, which is carried by some types of ticks which live on sheep, deer, badgers and other warmblooded animals in forested, heathland and moorland areas.
Infected ticks can transmit the organisms during blood feeds, when they may be attached to the skin for several days if left undisturbed. The most common problem associated with the infection is a rash spreading from the site of a tick bite, but other more serious problems can occur. These include a viral-like meningitis, facial palsy, other nerve damage or arthritis.
Hugo Swire MP said, “Lyme disease is like an alien - the bacteria tries to take over your body. It is very serious and can make you permanently disabled. We need to be more aware of its dangers and more open to its diagnosis and more determined in its treatment.”
Areas in the UK where people acquire Lyme borreliosis include many popular holiday and outdoor activity destinations such as Devon but also the New Forest, Exmoor, the Lake District, the Scottish Highlands and Islands, North York moors, Thetford Forest and the South Downs. It is understood that at least 50% of infections acquired in the UK are known to have been acquired in the southern counties of England.
“No vaccine against Lyme disease is currently available, so tick awareness, appropriate clothing in tick infested areas, and early removal of attached ticks remain the most important prevention measures,” said Mr Swire.
He said that in recent years there had been a significant increase in the cases of Lyme disease, from under 200 in 1997 to nearly 600 in 2005. The disease was often unrecognised causing it to remain undiagnosed in some individuals for significant periods of time such as with his constituent Mrs Stella Huyshe-Shires.
Mr Swire said his concerns focused on the UK’s complete reliance on the Lyme disease guidelines set down by the Infectious Diseases Society of America (IDSA) despite the fact that the causative organisms and symptoms differed in Europe.
“Patients say that the range of their symptoms is not recognised and that despite continuing symptoms some are denied antibiotic treatment beyond a 28 day course because of the use of these guidelines. This is clearly unacceptable.”
Mr Swire cited The Attorney General of Connecticut who recently uncovered serious flaws in the IDSA’s process for writing the current Lyme disease guidelines. In particular he found that the guidelines panel “improperly ignored or minimised consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
Hugo Swire said, “Given this background it seemed an appropriate time to re-consider the evidence and to argue for the development of UK guidelines for the diagnosis and treatment of Lyme disease.”
MPs, the Health Protection Agency, infectious disease consultants and other clinicians all attended the seminar. But Mr Swire was disappointed that no members of the Department of Health decided to attend despite being invited.
The speakers included sufferers Mel Clarke, Paralympics archer and Mrs Stella Huyshe-Shires as well as experts Dr David Owen, a GP specialising in Lyme Disease, Professor Sarah Randolph, Professor of Zoology, University of Oxford who gave a summary of what she thought the significant driving force for the apparent rise in cases of Lyme disease and other tick-borne diseases in UK were and Dr Sue O’Connell Head, Lyme Borreliosis Unit from the Health Protection Agency who talked about the case for maintaining the existing diagnostic and treatment guidelines and the rationale behind them.
After the event Mr Swire said, “It was a very useful seminar although it was disappointing that the Government failed to send a Minister or a representative from the Department of Health. What is clear is that there is a problem agreeing a clinical case definition for Lyme disease. However, on the positive side there are a number of practical things that can be done such as setting up a national disease register to monitor people who have been bitten by ticks.
“Further, we need to raise awareness of this disease and clinicians need to better co-ordinate diagnosis and treatment as all were agreed that early treatment is vital. Additionally, the United Kingdom should immediately develop its own guidelines rather than continue to rely on The Infectious Diseases Society of America (IDSA) guidelines on the diagnosis and treatment of Lyme disease.”
Ends
Notes to editors
NOTE TO EDITORS
For more information please call Caroline Cartland on 0207 219 1757
Also attending the seminar were;
Dr Barbara Bannister, Consultant in Infectious Diseases, Royal Free Hospital
Dr Stephen Wright, Infectious Diseases Consultant, UCL Hospital for Tropical Diseases
Professor Tim Peto, Infectious Diseases Consultant, Churchill Hospital
Graham Jukes, Chartered Institute of Environmental Health Chief Executive
Mr Clarke (father of Mel)Majorie Monnickendam, Health Protection Agency
Dr Robert Smith, NPHS Wales Dr Sarah Chissell Dr Tanya White
Dr Sarah Purcell
An Early Day Motion (No 958) was submitted on 19th February 2008 by Julia Goldsworthy MP. 87 signatories
That this House acknowledges that Lyme disease, also known as Lyme borreliosis, is a serious and potentially chronic disease which is becoming more widespread across the United Kingdom; notes the growing body of evidence which suggests patients with the disease are frequently subject to misdiagnosis and under-treatment; is concerned that the disease appears to be under-reported and inadequately investigated; and calls upon the Government to put in place a national strategy for reducing the growing toll of ill-health caused by this disease, including the development of clinical guidelines specific to the UK for the use of all medical professionals dealing with patients with this disease.
The Attorney General of Connecticut: (http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284)
