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
There can be a lot of misunderstanding around Lyme disease – such as what it is, and how it affects people, both in the short and long term. We recently asked our social media followers what they wish other people knew about Lyme disease, and we got a wide range of responses. Some wished for … More What you wish people knew about Lyme disease
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?
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
For this week’s blog feature, we’re sharing the story of Lyme patient Tracy Dopson, who wrote in to the charity with this piece on her experiences, and what she wants others to know. If you’re often asked by friends and family how you are, and you don’t know how to reply, or how to explain … More Living with Lyme disease…….and I’M FINE!
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
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
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
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?
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