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
Nikki Ellis from Staffordshire is the subject of our most recent blog. After suffering from chronic illness for 12 years, she has at times been bedbound, requiring the help and support of her family to care for her daughter. After struggling to get a concrete diagnosis and experiencing mental health problems because of her illness, … More How a chronically ill patient found purpose and employment through her illness
After the success of last year, we’re once again looking for supporters to organise ‘Lymewalks’ in their communities during Lyme Awareness Month in May. What are Lymewalks? These are walks of any size and type that aim to raise the profile of Lyme disease among family, friends and community, and to raise money towards research … More Lymewalks 2020 – get involved!
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
In November 2019, a two day workshop was held in Liverpool by the NIHR’s Health Protection Research Unit in Emerging and Zoonotic infections (HPRU EZI) to review the research that has taken place on tick-borne diseases in the last couple of years, and identify gaps in knowledge and areas of research for future focus. The … More Report from RIPL and HPRU on the Lyme disease research workshop
2019 has been an extremely busy year for the charity, and for the world of Lyme in general. With new studies being published, a high profile for a time in the national media, and news of UK research on the horizon, many exciting things have happened and 2020 looks set to be a game changer … More Our 2019 in Review
We are delighted to announce that businesswoman, author and TV personality, Lara Asprey, has become an ambassador for Caudwell LymeCo Charity. She is a dating and relationship expert and CEO & Founder of Asprey Introductions, a matchmaking and introduction agency. In 2018 she became the face of brand new dating show ‘The Ultimate Matchmaker’ now … More Introducing our new Charity Ambassador
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% – … More Round up on recent Lyme research news
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!
If your child has been diagnosed with Lyme disease, you may be worried about how long they will remain ill or whether there may be any permanent effects. Most people who catch Lyme disease, and are treated for it promptly, do make a full recovery. This article gives you practical advice on how to look … More How to look after a child with Lyme disease
Catching any illness when you’re pregnant is frightening. Once you start reading about Lyme disease and finding more stories on the internet, this may ramp up to feeling terrified. Don’t Panic! The most important thing to remember is that treatment exists. The Centers for Disease Control and Prevention (CDC) in America has also addressed the … More What to do if you catch Lyme disease when you’re pregnant
Teaching at home Do your children know how to tell a tick from a spider? Do they know which kind of flies drink blood? Do they know how to protect themselves from Britain’s most dangerous parasite? We have downloadable worksheets to teach them how to avoid tick danger, without scaring them off playing outside! There … More Teach your children some tick bite safety
As it’s Lyme Awareness Month, the weather is improving, and thoughts may be turning to summer holidays, this week’s blog features our top ten tips on how to best protect yourself from ticks whilst camping. Camping holidays are a fantastic way to enjoy our beautiful countryside and bring families or friends together. You can give … More Ten ways to beat the blood suckers when you go camping this summer
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
