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 […]
Read moreThe UK government’s Independent Lyme disease reviews: a discussion with Prof. Chris Whitty
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 […]
Read moreA visit to the Rare and Imported Pathogens Laboratory
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 […]
Read moreSURVEY RESULTS: Lyme disease diagnosis and treatment on the NHS
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 […]
Read moreGiving Lyme Patients a Voice
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 […]
Read moreAdd your Lyme story
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 […]
Read morePATIENT SURVEY: What does Lyme disease cost the NHS?
Please note, this survey is now closed. We have received our target 500 responses and we are analysing the results. They will be published in due course. Thank you to everyone who participated in the survey. A MESSAGE FROM JOHN CAUDWELL To all those sufferers who have confirmed diagnosed Lyme disease in the UK, could […]
Read moreMeeting with Jeremy Hunt and Simon Stevens
BY JOHN CAUDWELL My Lyme Chief Executive, Veronica Hughes and I met Health Secretary Jeremy Hunt and the CEO of NHS England Simon Stevens to talk about the current problems surrounding lack of diagnosis, lack of treatment and therefore lack of care for LymeCo Disease patients in the UK. I spoke about the poor performance […]
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Daily Mail Report
A Daily Mail article published on 12th December 2015 quotes John Caudwell as saying: “I am crystal clear this is one of the most dangerous illness to mankind today. Lyme disease is damaging hundreds of thousands of lives.” John’s very brave decision to put his family’s suffering in the limelight to help others is given […]
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Round up on recent Lyme research news
Over the last few months, there has been a number of reports, papers, and studies announced on research for improving diagnosis and treatment of Lyme disease. In this latest blog we’ll aim to give an overview of some of these studies. Disulfiram for treatment of persisting symptoms Figures from the U.S suggest around 10% – […]
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