Notes for Editors

Lyme Disease UK would like to connect with journalists from all media outlets and to help out with features on Lyme disease. We can put you in touch with Lyme disease sufferers, doctors and other experts to aid your work. Patient stories and photos available.  Facts and stats are available on our website.  Please send links to any published stories if you wish us to share them via our social media channels.

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What is Lyme disease?

Lyme disease is caused by a spirochaetal bacteria from the genus Borrelia. It is most commonly transmitted through the bite of an infected tick. Ticks can be found all over the United Kingdom, often in woodland and grassy areas but also in urban parks and gardens. Around 1,000 serologically confirmed cases occur in the UK each year, however Public Health England estimate that there could be around 3,000 new cases per year. Data is incomplete and the true number is likely to be much higher.

The need for greater awareness of Lyme disease

It is vital to inform people about Lyme disease, because everyone who goes outside is at risk and the illness is often misdiagnosed due to a lack of knowledge amongst doctors.

  • Current testing methods are inadequate giving false negative results, and we do not have a test which can tell us when Lyme disease has been cured. It is essential for doctors to be aware of the signs and symptoms of the disease so that it does not go undiagnosed. Many doctors are unaware of the NICE guidelines for Lyme disease which were published in 2018 or The RCGP’s Lyme Disease Toolkit.
  • Treatment is more likely to be effective if Lyme disease is diagnosed early.
  • Early symptoms can include an Erythema Migrans (EM) rash in the shape of bull’s-eye rash (but the rash can also be atypical in appearance), swollen glands, fever, headaches, numbness and tingling, muscle and joint pain and fatigue. If the disease is left untreated it can result in cardiac problems, chronic pain, neurological complications and other disabling symptoms.
  • Awareness is crucial as people need to learn how to protect themselves, their families, and their pets from this potentially dangerous disease. In 2016, the Big Tick Project discovered that a third of dogs checked in a study had ticks attached which their owners did not know about.
  • Lyme disease is sometimes misdiagnosed as conditions with similar or overlapping symptoms such as chronic fatigue syndrome, depression, fibromyalgia and multiple sclerosis. Many of the members of our Online Community group have had difficult and prolonged experiences trying to obtain an accurate diagnosis.

About Lyme Disease UK

Lyme Disease UK is a UK registered charity providing patient support and raising awareness of Lyme disease. We are the largest patient support network in the UK and we have over 11,000 members in our Online Community on Facebook. We are stakeholders in the NICE Lyme disease guidelines and were stakeholders in the independent reviews on Lyme disease commissioned by the government. Our mission is to prevent any more UK residents from facing the devastating consequences of being misdiagnosed and untreated for Lyme disease. We hope to achieve this by working to ensure that:

  • All front line medical staff in the UK are aware of Lyme disease and at least one doctor in each team has completed the RCGP online course on Lyme disease.
  • Every UK household is aware of the risk of tick bites and Lyme disease and understands prevention methods and symptoms to look for.
  • We provide support and knowledge to every single UK resident who is infected in 2020 as well as continuing to provide support to those already suffering with Lyme disease. 

Media interest in Lyme Disease

Media interest in Lyme Disease continues to grow particularly since celebrities such as Justin Bieber, John Caudwell, Yolanda Foster, Ally Hilfiger, Avril Lavigne, Matt Dawson and Nell McAndrew have been talking publicly about their struggles with Lyme disease.  Our members regularly appear in the national press and on TV. We can provide a list of links to articles and TV appearances if this would be of interest.

Suggested text for tweets

  • Protect yourself from ticks by wearing tick repellent, sticking to well maintained pathways, doing regular tick checks, carrying a tick remover tool, wearing long- sleeved tops and tucking trousers into socks. #WakeUpToLyme
  • To check yourself for ticks: Check all outer layers of clothing and gear. Inspect every part of your body including the less visible areas like between the toes, the waistline, groin and behind the ears. Remember, ticks can be as a small as a poppy seed. #WakeUpToLyme
  • After visiting an area with ticks, have a shower and put all clothes unwashed in the tumble dryer on the highest heat possible for at least 10 minutes. #WakeUpToLyme
  • A popular myth is that if the tick has been attached for less than 24 hours, there is less of a chance that #Lymedisease has been contracted. This is not true. No minimum attachment time to transmit the infection has been established. #WakeUpToLyme
  • Remove any embedded ticks as quickly as possible using a tick removal tool or fine-tipped tweezers. #WakeUpToLyme
  • Early symptoms of #Lymedisease include a rash, known as erythema migrans (this is diagnostic of Lyme disease but it isn’t always present); Fatigue; Muscle Pain; Joint Pain; Headaches; Fever and Chills; Neck stiffness; Nausea; Digestive Issues. #WakeUpToLyme
  • Left untreated, Lyme disease can become extremely serious and lead to complications including cardiac issues, neurological disorders and mobility problems. Early diagnosis and treatment are crucial. #WakeUpToLyme
  • Lyme disease is a bacterial infection and is treated using antibiotics. #WakeUpToLyme
  • If you have been bitten by a tick and have an erythema migrans rash, a blood test is not necessary. Your GP should start treatment for Lyme disease immediately. #WakeUpToLyme
  • Blood testing for #Lymedisease is flawed. Lyme needs to be a clinical diagnosis based on symptoms and signs. #WakeUpToLyme
  • Approximately of Lyme disease patients never experience the erythema migrans ⅓ rash, and even if present can be atypical in nature. #WakeUpToLyme
  • If you are prescribed antibiotics for #Lymedisease by your doctor, take the full course even if you start to feel better. #WakeUpToLyme
  • #Lymedisease can be difficult to diagnose because symptoms can be varied and fluctuating. Lyme disease also mimics many other conditions. #WakeUpToLyme