LYME DISEASE ACTION
Registered Charity 1100448
Registered Company 4839410
Founded as a charity November 2003.
PRESS RELEASE
9TH JUNE 2005
PRESS RELEASE
* Conference on Tick Borne Diseases to be held at Halifax Hall, University
of Sheffield on 17th and 18th June 2005.
* Topics to be addressed at the
Conference include Lyme Disease (Lyme
Borreliosis), other Borrelioses present in Europe, and other co-infections
that can be passed to humans by the bite of an infected tick.
* The ill health that can ensue in large numbers of tick-bite victims will
be discussed from a clinical
point of view. The Conference Keynote speaker,
Dr. Joseph Jemsek of North Carolina, has great experience in treating these
patients.
* The ensuing ill-health is characterised by severe ‘flu-like malaise,
overwhelming lassitude, muscle weakness, headache, sensitivity to light
and
noise, joint pain, upset digestive system, sometimes a characteristic rash,
sleep disturbance, tinnitus, poor concentration and memory loss,
irritability and cognitive disturbance sometimes leading to depression and
other symptoms affecting the brain. The symptom pattern varies
from person
to person. The other notable characteristic of this family of bacterial
diseases (spirochaetal diseases) is that they are often hard to diagnose.
* Are these infected ticks present in the UK? Are people in the UK
catching these infections? Can these infections be
adequately diagnosed in
the UK at the present time? These topics will be addressed by many expert
speakers. Please see the Programme on our website.
* Lyme Disease Action maintains that this threat is present and is
happening in the UK at the present time in spite of the
official position
that only 2000 to 3000 people per annum contract the infection. (See
reference (3) below). Lyme Disease Action maintains that there are
uncertainties and gaps both in the diagnostic procedure and possibly in the
the surveillance. In our experience there are
thousands more victims than
official estimates reflect.
* Lyme Disease Action is lobbying for prompt diagnosis and treatment for
patients. The consequences of a patient not being treated can be disastrous
for the patient, so where the symptoms are present prompt treatment
should
be given regardless of “diagnostic blood test” status of the patient.
* Lyme Disease Action is also lobbying the Government for much greater
measures to prevent the illness in the future, a much greater research
effort to be put into this field and real effort going into
raising the
awareness of the medical profession and the general public of the dangers of
Lyme and its associated hazards. This responsibility rests primarily with
the Government.
* Lyme Disease Action also addresses the above issues since the charity
feels that government
action at present is woefully inadequate.
* Lyme Disease Action has adopted the Evidence-based Guidelines for the
management of Lyme Disease published by The International Lyme and
Associated Diseases Society which is a professional society of physicians
involved in the care of
Lyme patients. Please see www.ILADS.org
* We follow the ILADS guidelines when we share information with UK and
European patients at present through a yahoo internet group, EuroLyme.
http://health.groups.yahoo.com/group/EuroLyme/
* Lyme Disease Action has a designated research fund which can receive
funds for research. Please see our
website. www.lymediseaseaction.org.uk
Or people wishing to support us generally can donate to our cause there
also.
* The media have acknowledged for several years
now that there are many
patients in the UK who are long-term sick and only able to receive
‘notional’ diagnoses such as having a chronic fatigue syndrome or a fatigue
spectrum disorder. The conference will address if this is connected to
current concerns about tick borne
disease.
*******
REFERENCE MATERIAL
* Press Contact:
– Please contact Sheffield University Press Office: Contact Danielle 0114
222 5339
– or Stephanie Woodcock, chairperson of Lyme Disease Action, 01326
375419/Mobile 0783 362 3713
or through www.lymediseaseaction.org.uk
or 53 Kernick Road, Penryn, Cornwall TR10 8NS.
– or Mrs Gill Reese, 01430 810274, gilly848@nullntlworld.com
trustee and co-organiser of conference.
* Other recent Medical Press items:
Patients:
(1) – Woodcock S. Lyme borreliosis: perspective of a scientist-patient.
Lancet Infect Dis 2005;
5: 70 – 71
(2) – Hamlen R. Lyme borreliosis: perspective of a scientist-patient.
Lancet Infect Dis 2004; 4: 603 – 604
Official Position:
(3) – O’Connell S. Lyme Borreliosis in ‘Medicine’ 33:5 Bacterial
Infections.
2005 The Medicine Publishing Company Ltd.
(most
recent issue)
Dr. O’Connell is the head of the Lyme Disease Reference Laboratory that
monitors England and Wales.
General Comment:
(4) – The Times, Monday May 30th 2005, ‘Alarm at sharp rise in tick disease’
by Valerie Elliott, Countryside editor.
(5) – The Field, June
2005. pages 18 – 21 “Breaking Covert – Lyme Disease,
the country’s hidden killer’ by Colin McKelvie.
Reference websites:
www.lymediseaseaction.org.uk (patients)
www.ILADS.org (Website for doctors who recognise that patients need help).
and the official UK position can be found at the Health Protection Agency
website. www.hpa.org.uk
Lyme Disease Action
9th June 2005