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
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
The National Institute for Health and Care Excellence has today published guidance on Lyme disease, for NHS doctors, for the first time. The official guideline can be read here. Our summary of the guideline and FAQ The 5-minute Caudwell LymeCo guide, What does the NICE guideline for Lyme disease say?can be read here. There is … More The NICE guideline for Lyme disease is now published
The All Party Parliamentary Group (APPG) for Lyme disease hosted a ’round table’ meeting for Lyme disease patient group representatives in the House of Commons on Tuesday 23rd January 2018. Caudwell LymeCo was represented at the meeting by the charity’s Chief Executive Veronica Hughes, to outline the charity’s requests for the parliamentary group to consider. … More The All Party Parliamentary Group for Lyme disease meeting with patient representative groups
The NICE Guidelines research recommendations can be read in full here Our version is designed to be read in 3 minutes. Are you ready? 1. Develop a “core outcome set” for studies of Lyme disease We need a standardised list of all Lyme symptoms, and a number rating to indicate severity (e.g. from 1 to … More The NICE Guidelines Lyme Research Recommendations IN 3 MINUTES
December 2017 An independent enquiry into Lyme disease, commissioned by Jeremy Hunt on behalf of the Department of Health, has just been published. Origin of the Independent Enquiry Back in spring 2016, the founder and sponsor of Caudwell LymeCo Charity, John Caudwell, and the charity’s Chief Executive, Veronica Hughes, met Health Secretary Jeremy Hunt and … More UK Government’s Independent Enquiry into Lyme Disease
DISCLAIMER: Caudwell LymeCo charity shares public domain information, which it believes to be reliable, in good faith. It should never replace the advice of a qualified physician with a license to practise medicine. If you believe any information on this website to be incorrect, you are invited to contact the charity using the Contact page. … More Do the Draft NICE Guidelines acknowledge chronic Lyme disease?
The UK Department of Health’s recently published Independent Enquiry into Lyme disease made a variety of research recommendations. This blog post comments on these, and compares them with the research recommendations made in the Draft NICE Guidelines for Lyme Disease. Please note that comments are on the Draft version of the NICE Guidelines. The finalised … More Research Recommendations in the Government’s Independent Reviews compared to the Draft NICE Guidelines
When the Wintour family found out that one of their sons, Adam, had Lyme disease, they decided to do something constructive about it. So they organised the Bowood House Triathlon. The tireless organiser, Laura, press-ganged most members of the connected Broadhurst, Wintour and Lambton families into participating – somewhat against their will, we have been … More Fundraising Triathlon for Lyme disease Research
At Caudwell LymeCo we hear so many stories about lives ruined and the devastating effects of Lyme disease that we sometimes wonder if anyone actually recovers from this horrible illness. So we are happy to share a story with a happy ending. Above all, we want to share the very important lessons to be learned … More Interview with a Lyme disease success story
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!
This September Rob Berridge ran the Windsor Half Marathon and raised over £700 for Caudwell LymeCo. He became the very first of a growing number of fundraisers who are volunteering to run marathons in aid of Lyme disease research. The money Rob raised will be spent on desperately needed research into Lyme disease. Lyme has … More Thank you to our first marathon runner!
Caudwell LymeCo was grateful to speak to one of the world’s leading experts on safe tick removal, known as Tick Man Dan. Proof of his expertise is the fact that he has personally removed more than 300 ticks from his own body, and does not have any tick borne diseases! He makes educational and entertaining … More How to check for ticks
Caudwell LymeCo received a press release today announcing that the EU has given a €2 million research grant to Netherlands-based Innatoss Laboratories to develop an innovative diagnostic test for Lyme borreliosis. We congratulate Innatoss and wish them every success in their interesting and important work. The researchers at Innatoss have already proven their ability to … More EU gives Innatoss €2 million funding to develop a new Lyme diagnostic test
Caudwell Lyme Disease CEO, Veronica Hughes, has been offered a position as a lay member of the NICE guidelines committee for Lyme disease. The committee will meet regularly for approximately the next two years, to evaluate and discuss published research on Lyme disease and use this as the basis for new, evidence-based treatment guidelines for … More NICE Guidelines Committee for Lyme Disease
John Caudwell and Veronica Hughes met Professor Chris Whitty and scientific colleagues at the Department of Health on 23rd May 2016. The purpose of the meeting was to discuss the independent enquiry into Lyme disease which Health Secretary Jeremy Hunt, and C.E.O. of NHS England Simon Stevens, have asked Professor Whitty to commission following their … More The UK government’s Independent Lyme disease reviews: a discussion with Prof. Chris Whitty
John Caudwell and Veronica Hughes visited Public Health England’s scientific campus at Porton Down in Wiltshire, including a tour of the Rare and Imported Pathogens Laboratory (RIPL) where the specialist Lyme disease testing for England and Wales is carried out at the request of NHS doctors. We met Professor Derrick Crook, Director of PHE’s National … More A visit to the Rare and Imported Pathogens Laboratory
Caudwell LymeCo charity ran a survey of UK Lyme disease patients from February to April, 2016. The survey asked patients about the care they had received for their Lyme disease on the NHS. We have produced a PDF document which gives the aggregated responses to each question in the survey. Please note: The information and … More SURVEY RESULTS: Lyme disease diagnosis and treatment on the NHS
A visit to the Health Secretary and CEO of NHS England On 29th February 2016, John Caudwell and Veronica Hughes hand-delivered a selection of thirteen patient case studies to health Secretary Jeremy Hunt and to Simon Stevens, C.E.O. of NHS England. These case studies were selected to demonstrate the serious lack of care available for … More Giving Lyme Patients a Voice
Read patient stories This page offers some patient stories.These stories are published as submitted, and not edited or verified by Caudwell LymeCo Charity. Add your story We invite you to add your own story, by writing in the text box at the very bottom of the page. Please include information about: Symptoms that helped you … More Add your Lyme story