Lyme disease is spreading rapidly
The World Health Organisation has issued warnings about Lyme disease, publishing statistics which indicate that new cases of Lyme disease are around 300,000 a year and increasing at 14% year-on-year in Europe.
Anyone can catch Lyme disease. Ticks can be found in urban parks and gardens, as well as in forests and the countryside. There are over 3,000 new cases of Lyme disease a year in the UK (Public Health England) – that’s 8 people per day. But given the lack of a truly reliable diagnostic test and treatment, the true figure is thought to be much higher. Thousands of people are suffering in silence, or unaware of the real cause of their illness.
The current situation: patients need better care
Many people with Lyme disease report feeling abandoned and ignored by the NHS. The government’s independent enquiry of 2017 reported that there is a lack of understanding and training in the medical profession around spotting Lyme disease, delays in diagnosis, and the consequent development, for many, of life-limiting symptoms.
Some patients pay private doctors and try experimental treatments – some of which consist of taking open-ended courses of antibiotics for many months – with varying outcomes.
These treatments are only available to those with the funds to pay for them, which are usually substantial. We think this is not fair. These treatments are also unproven and we know of many people who undertake treatment but are not ultimately cured.
Up to 1/3 or more of Lyme patients still suffer symptoms after treatment. Some people are too ill to work ever again.
Why do we have these problems?
There are three key elements causing this situation.
- There is not currently a ‘gold-standard’ or truly reliable test to diagnosis Lyme disease
- There is little and low-quality research on treatment for Lyme disease
- There is a lack of clinical experience of Lyme disease
We aim to address these elements by raising money to fund desperately needed research that will help to resolve this situation.
Why Caudwell LymeCo?
We are a UK charity raising money for Lyme disease research.
We need research done in the UK, because American or other overseas patients may have different strains of the bacteria, and get different research results.
We educate the public on disease awareness and prevention
If people are more aware of how Lyme disease can be caught and prevented, then our hope is that less people will suffer.
We offer information and support to Lyme disease sufferers.
We provide information on diagnosis and treatment based on the The National Institute of Health Care and Excellence (NICE) guidelines, which we helped to form, as well as a place for sufferers to receive support throughout this sometimes isolating and debilitating illness.
Every penny donated goes to research. Our sponsor, Mr. John Caudwell, pays all the core costs of Caudwell LymeCo Charity, including staff salaries.
Which research do we need?
The National Institute of Health Care and Excellence (NICE) has published Lyme disease treatment guidelines for NHS doctors. They include research recommendations.
Caudwell LymeCo aims to help fund this research.
How much do we need?
The estimated amount needed for this research is