Charity update – how we’re working through the coronavirus pandemic

We hope that this finds you and your family safe and well. We know you will have received lots of communications and information from all sorts of organisations over the past couple of weeks, so we won’t take up too much of your time.  We simply wanted to share some information on Lyme disease and the coronavirus which … More Charity update – how we’re working through the coronavirus pandemic

Meet Toby – the Lyme disease sufferer releasing a charity single

In this week’s blog we’re delighted to introduce Toby, a singer/songwriter from Cambridge who is releasing a charity single that will benefit Caudwell LymeCo and other UK Lyme charities. Toby, 25, has suffered with Lyme disease for over 13 years and feels passionate about raising awareness and contributing towards research that will improve diagnosis and … More Meet Toby – the Lyme disease sufferer releasing a charity single

We’re in the Big Give Challenge and it starts tomorrow!

We are delighted to have been selected to take part in this year’s Big Give Christmas Challenge! It’s the UK’s biggest online match funding campaign, which helps many charities raise millions each year towards worthy causes, and gives donors an amazing opportunity to double their donation towards the causes they care about. How does it work? … More We’re in the Big Give Challenge and it starts tomorrow!

Claims that “most Britons who think they have Lyme disease actually suffer from chronic fatigue syndrome” further prove the need for accurate testing

Yesterday, Science Media Centre held a briefing for scientists and journalists to discuss the state of the evidence on the number of UK Lyme disease cases, and the controversy around the tests and diagnosis. The meeting was instigated following concerns around the accuracy of the study published back in July that found cases of Lyme … More Claims that “most Britons who think they have Lyme disease actually suffer from chronic fatigue syndrome” further prove the need for accurate testing

Reactions to the BMJ Open study on Lyme disease – and what’s next?

It’s now been one week since the BMJ Open published a study based on the records from a GP medical database of 8.4 million people from between 2001 and 2012, that ultimately suggested a much higher number of annual cases of Lyme disease than in previous estimates. It’s likely that you saw the news and … More Reactions to the BMJ Open study on Lyme disease – and what’s next?

NICE Quality Standard for Lyme disease now published

The NICE Quality Standard for Lyme disease was published yesterday (10th July 2019). The quality standard covers diagnosing and managing Lyme disease in people of all ages. It also includes raising public awareness about prevention. It aims to work alongside the NICE Guideline for Lyme disease, helping to improve care of Lyme patients and increase … More NICE Quality Standard for Lyme disease now published

Progress needed in patient treatment under the NICE guideline

Caudwell LymeCo has just run a survey of over 200 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we reported were based on the responses given by patients and we have not independently verified them with their doctors or diagnostic laboratories. … More Progress needed in patient treatment under the NICE guideline

Comments by Lyme disease patients on the NICE guideline

Our recent survey asked patients about their experience of diagnosis and treatment for Lyme disease since the NICE guideline has been published. It showed that there have been some improvements – but there are some areas which could be much better. We decided to make the last question a free text entry, so people could … More Comments by Lyme disease patients on the NICE guideline

NHS Quality Standard for Lyme disease at Second Stage

Last week, the QSAC (Quality Standard Assurance Committee) for Lyme disease met for the second and final meeting on the quality statements that will be provided for doctors, nurses, and other clinical staff when dealing with Lyme disease. The aim of quality statements A “quality standard” contains brief action-focused statements about a specific patient experience … More NHS Quality Standard for Lyme disease at Second Stage

LymeCo Survey Results: Is the NICE Guideline being followed?

The guideline will be one year old in a few weeks’ time: how many doctors know what it says? Caudwell LymeCo has just run a survey of 212 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we report here are based … More LymeCo Survey Results: Is the NICE Guideline being followed?

What to do if you’ve just been diagnosed with Lyme disease

So you’ve just been diagnosed with Lyme disease. Now what? 1. Don’t panic! The amount of doom and gloom about Lyme disease on the internet may make you think you have something worse than anthrax. Just remember that more than half of people who catch Lyme disease recover completely, and even a sizeable proportion of … More What to do if you’ve just been diagnosed with Lyme disease

Survey: Is the NICE guideline for Lyme disease being followed?

Caudwell LymeCo began the year 2016, as soon as the charity was founded, by giving UK Lyme disease patients a voice with our survey of 500 people. The survey highlighted years of neglect for almost all our respondents, alarming delays in their diagnosis and, for most, insufficient treatment that left them unable to resume their … More Survey: Is the NICE guideline for Lyme disease being followed?

Warmest February weather on record triggers tick breeding season three months early

This February is set to be the warmest since records began for many parts of Britain. The mild sunny weather is not only bringing the pleasure of freakishly early spring flowers, but also starting what could feasibly be the earliest British tick breeding season in over 100 years. The tick breeding season in Britain usually … More Warmest February weather on record triggers tick breeding season three months early

Caudwell LymeCo’s 1,000 Bracelet Challenge

What is the Caudwell LymeCo Bracelet Challenge? Our challenge is simple. We want 1,000 people wearing Lyme awareness bracelets and starting conversations about Lyme disease Donate £5 for research and tell others how to keep safe. What is Lyme disease? Lyme disease can hit anyone at any time. You can catch it from the bite … More Caudwell LymeCo’s 1,000 Bracelet Challenge

Marathon runners set new record for Lyme disease research

Seven outstanding volunteers have completed marathons in aid of the Caudwell LymeCo research fund this year, setting a new record as the first people in the UK to run marathons to raise money for Lyme disease research. Together they have raised tens of thousands of pounds, which will go towards vital research to help find … More Marathon runners set new record for Lyme disease research

The first year UK marathon runners raise money for Lyme disease research

This April, seven volunteers will become the first in the UK ever to run marathons to raise money for Lyme disease research. All the runners are raising donations for the Caudwell LymeCo Charity research fund, and six of the seven have never run marathons before. “These runners are making a real difference by supporting Caudwell … More The first year UK marathon runners raise money for Lyme disease research

How to raise money for Lyme disease research without giving anything!

You can now raise money for desperately needed Lyme disease research without actually donating a penny. All you have to do is some online shopping! Go to the Easyfundraising.com Caudwell LymeCo page. Sign up as a Caudwell LymeCo Charity supporter. Download the Easyfundraising browser button, so you remember to go to your shopping websites VIA the easyfundraising … More How to raise money for Lyme disease research without giving anything!