Lyme Disease UK was founded in March 2013 and has since undertaken many projects to help push forward advancements in awareness, diagnosis and treatment of Lyme disease in the UK.
- On 8th February, representatives from LDUK and other Lyme disease groups and organisations attended a meeting in Westminster, arranged by Teresa Pearce MP and her consitituent Deb Collins. MPs and members of the House of Lords were able to meet with doctors, researchers and patients with the aim of forming an All Parliamentary Party Group (APPG) which was achieved in March. Thanks go to Simon Hoare MP and Michelle Donelan MP for co-chairing this group.
- LDUK received a Top Lyme Disease Blog award from Feedspot
- LDUK launched its first big awareness campaign, ‘Wake Up to Lyme’ which was a huge success! Awareness packs containing leaflets, posters and other educational materials were distributed across the nation and put up in pharmacies, GP surgeries, supermarkets, post offices, vet clinics, libraries and schools. The campaign was a big hit across social media as well with our campaign Facebook posts being viewed over 220,000 times.
- LDUK representatives attended the AONM’s conference entitled Chronic Disease Uncovered – Lyme Disease, Viral Pathogens, Morgellons, Mould and More. Our awareness campaign materials were also distributed at the conference.
- A Scottish Lyme disease rally was held on 24th May to raise awareness of Lyme disease in Scotland as part of the global awareness campaign and protests, supported by LDUK. LDUK awareness materials were displayed and distributed.
- Alexander Burnett MSP sponsored and invited LDUK to hold an awareness event in Scottish Parliament following his motion ‘Lyme disease: a need to do more’ which was debated on the same day as the event. The drop-in awareness event was attended by approximately 100 people which included many Scottish MSPs, members of the Lyme Disease UK team, doctors with experience of treating Lyme, representatives from outdoor and recreational organisations as well as patients and carers.
- LDUK launched downloadable awareness presentations for schools, children and any special interest groups as well as an educational webinar
- The Fight Lyme Now campaign continued to gather momentum and almost 1000 patients have now participated in the MP endorsed patient survey. It’s not too late to add your voice if you are a Lyme sufferer and a UK citizen and help the campaigners meet their target of 1000 participants. Dr Chris Newton and Demetrios Loukas appeared on BBC Breakfast to talk about the campaign in more detail and group members shared their stories and drew attention to the campaign on radio stations around the country.
- Lyme Disease UK and the charity Lyme Disease Action took part in a Q&A exercise to try and address numerous differences between patients and the charity. The final document can be found here.
- LDUK group member Veronica Hughes has been appointed CEO of philanthropist and business man John Caudwell’s new Lyme disease charity, Caudwell Lyme Disease. Congratulations Veronica! LDUK members have been avidly completing the Caudwell Lyme Disease patient surveys, sharing their case studies and submitting photos documenting their Lyme disease battles. We are really grateful that LDUK features on the charity website. We wish Caudwell Lyme Disease all the best and thank you for giving patients in this country a voice!
- LDUK was invited to register as stakeholders in the NICE Lyme disease guideline writing process. The guidelines are due to be published in 2018. We attended a scoping workshop and submitted comments on the draft scope which were then published along with the final scope. These documents can be read here. Some of our members associated with other Lyme disease organisations and charities and also submitted comments as separate stakeholders so we hope that patient experience is accurately represented in the process.
- New charity Vis a Vis Symposiums set up by LDUK members launched. We look forward to many educational events in the future and wish the charity lots of good luck with fundraising.
- LymeAid UK, a charity established by LDUK members which provides grants for private Lyme disease testing, received its registration as an official charity. Congratulations!
- VIRAS launched a patient survey focusing on symptoms to explore the issue of misdiagnosis in the Lyme disease patient population and many LDUK members took part.
- Singer/songwriter Ren Gill launched his album ‘Freckled Angels’, despite battling Lyme disease.
- LDUK group members continued to bravely share their stories in the mediaLDUK group members helped to collect over 10,000 signatures for a parliamentary petition which now requires a response from the government.
- Many group members took part in a multimedia project, ‘In My Blood’ which was created by student journalists at Goldsmiths, University of London.
- Group members worked hard to collect stories on behalf of people too sick to attend the protest and created leaflets and posters for the event. Many members attended the protests in Bath and London and the 2016 events generated more media coverage than ever before. Rollo Skinner filmed interviews with Lyme disease patients and created a powerful short film.
- LDUK group member Emma Dolan Horlock and friends created an awareness video on Youtube, adding a Lyme disease twist to a Bob Dylan song.
- LDUK was invited to host a table at the third in the AONM series of conferences, ‘Lifting the Veil’ and ran its first successful fundraiser to purchase some banners, leaflets and other awareness materials. We are so grateful to everyone who generously donated to help spread the word about the work we do.
- LDUK group member Kellie Maher spearheaded a campaign, ‘About Time for Lyme’ with a large group of friends who took part in the obstacle race, Rough Runner. The team have been spreading awareness in the media and raised over £4000 for the charity LymeAid UK. Look out for future events from this dynamic team!
- LDUK members prepared a collective response to the government statement issued following the Lyme disease petition which generated over 1000 signatures.
- Jackie Elwin presented on behalf of LDUK at the NHS Sussex Community Foundation Trust Annual Infection Control and Prevention conference in Billingshurst.
- LDUK group member, singer/songwriter and vocal coach Rico Franchi launched his charity single ‘Getting Better’ from his album ‘Auditory Dreams.’ 50% the sales of the single are going to Caudwell Lyme Disease and LDUK group members shared and downloaded the single to help Rico chart on iTunes in the singer/songwriter category and raise money for a great cause at the same time.
- LDUK members took part in widespread media coverage of Lyme disease around the country as the Big Tick Project results were announced and naturalist and TV presenter Chris Packham gave free talks on Wimbledon Common.
- LDUK group member Deb organised an MP drop-in meeting on 6th September at Portcullis House to bring together MPs and Lyme disease sufferers and their loved ones to discuss raising awareness and fighting for change.
- LDUK group member Kellie Maher and two friends launched the About Time for Lyme website – an educational and awareness campaign.
- LDUK was nominated for the WEGO Health Activist Awards 2016 in the Best In Show: Community of Forum category!
- Model Michelle De Feo created an awareness campaign involving Front magazine, models, photographers and make-up artists.
- World renowned chefs Kirk Haworth and Nelly Robinson held two charity dinners in Australia and the UK to raise money for LymeAid UK and Vis a Vis Symposiums as well as an Australian Lyme disease charity.
- LDUK member James Pembroke created a compelling documentary , ‘Living with Lyme Disease’ which also featured other group members, doctors and scientists..
- In January 2015, LDUK group member Demetrios Loukas organised the first ever patient-lead Parliamentary Conference on Lyme disease which was opened and chaired by The Countess of Mar. Presentations were also given by group members Denise Longman and Peter Kemp. LDUK’s write up of the event and links to the presentations can be found here.
- The Lyme Disease Challenge kicked off in March and LDUK group members got involved and shared their videos and photos widely on social media in support of the campaign.
- In April 2015, The Big Tick Project was launched in the UK which is a collaborative research effort organised by the University of Bristol and UK vets across the country and backed by celebrity naturalist Chris Packham. The launch of this project sparked a lot of media attention and LDUK group members were interviewed by My Pet Online, BBC Breakfast, STV, BBC Radio Suffolk, ITV and also featured in The Daily Mail. A good round up of the publicity can be found on Joanne Drayson’s blog; Looking At Lyme.
- LDUK Co-Founders Louise and Natasha were grateful and honoured to be featured on the What Is Lyme website during Lyme Awareness Week. Every day during the month of May, people who help the Lyme community were acknowledged on this fantastic and informative website.
- LDUK members attended the 2015 London protest which made up part of the Worldwide Lyme Protest. Leaflets and tick awareness cards were handed out to raise awareness and encourage preventative measures.
- Group member Laura Brown created a presentation for school children to raise awareness of the dangers of ticks.
- Jenny O’Dea released her children’s book on tick awareness, The Adventures of Luna and Dips internationally in Kindle format on Amazon.
- LDUK helped to arrange for two patients to share their stories at American author Allie Cashel’s launch in London for her debut book Suffering the Silence: Chronic Lyme Disease in an Age of Denial
- In the wake of billionaire and philanthropist John Caudwell sharing his family’s battle with Lyme disease and announcing plans to set up of a new charity, LDUK members have been coming forward and sharing their stories in the press in an unprecedented media campaign to raise awareness of the disease.
- Representatives from the Academy of Nutritional Medicine joined LDUK Discussion Group and many group members have enjoyed attending their excellent three part Lifting The Veil conferences on chronic disease and infectious pathogens. Speakers have included Dr. Alan MacDonald, Dr. Armin Schwarzbach, Dr. Dietrich Klinghardt and doctors from the Breakspear Medical Group and a summary of the presentations given at the second conference can be found here. The AONM also became the official representatives for ArminLabs in the UK and so all testing enquiries should be sent to this organisation.
- LDUK group member and nutritionist Sally Wisbey was presented with an award by CAM for ‘Outstanding Contribution to the Community’ for her work in raising awareness of Lyme disease.
- LDUK group members Demetrios Loukas launched the Fight Lyme Now campaign with Dr. Armin Schwarzbach and Dr. Chris Newton to raise awareness of Lyme disease. Demetrios’ MP Neil Coyle hosted a survey on his website which has now been taken over by Robert Buckland MP and you can still take part if you are Lyme sufferer and a UK citizen. You can download the catchy song ‘Fight It’ for free.
- Co-founder Natasha Metcalf featured in a BBC Inside Out West documentary in January 2014 highlighting the problems and controversies surrounding Lyme disease testing and treatment.
- Group members Nicola Seal and Jenny O’Dea from Ticktalk Ireland featured on Katina Makris’ US-based radio show Lymelight Radio in April 2014 to discuss Lyme disease in the UK and Ireland.
- In May, group members organised and attended two UK events which formed part of the Worldwide Lyme Disease Protests 2014, garnering much media and public interest. The protests were held in two locations for the first time – Manchester and London. Waterloo MP Simon Hughes attended the London protest and promised to raise the issue of Lyme disease in parliament.
- In June 2014, LDUK group member Jocelyn Lees organised and funded The London Symposium of Tick Borne Diseases for UK medical professionals and veterinarians. Speakers included American Lyme disease experts Dr. Bernard Raxlen, Dr. Leo Shea, Dr. Elizabeth Valentine-Thon, Dr. Alan MacDonald, Dr. Daniel Cameron, Dr. Stephen Bock and Dr. Joseph Jemsek. We are all so grateful to Jocelyn for organising the symposium and for bringing so much knowledge to our shores.
- In December 2014, LDUK was nominated again by group members in 5 different categories for the WEGO Health Activist Awards: Best in Show Google +, Health Activist Hero, Best in Show: Community; Forum, Best in Show: Facebook, and Best Kept Secret
- LDUK group members Sophie, Val and Holly set up new UK based charity LymeAid UK to provide grants for people who suspect they have Lyme disease to carry out private testing at overseas laboratories.
- In April 2013, LDUK group members conducted a letter writing campaign to the Health Secretary Jeremy Hunt detailing our personal histories with Lyme, how we feel let down by the NHS, how hard it’s been to get appropriate testing and treatment and how many of us are getting into financial difficulty trying to fund private treatment. Our campaign was noted and the Department of Health were made very aware of the discontent we feel about the situation in the UK.
- In May 2013, LDUK group members took part in the Worldwide Lyme Disease Protest outside the Department of Health in London. We raised awareness and educated the public about Lyme disease, how to spot it and how to avoid it. We gave out leaflets, made banners and made friends. We also added our voice to the worldwide movement that got a considerable amount of media coverage.
- LDUK members also helped to collect signatures for one of the biggest petitions on Lyme disease the UK has seen with over 5,000 signatures at the time of handing it in to the Department of Health. It demands that Lyme becomes a notifiable disease not just when serologically confirmed but also in clinically diagnosed cases, so that accurate statistics can be compiled on its prevalence in the UK.
- Group members contributed to an awareness video to show the world how Lyme disease has impacted them.
- Over the summer of 2013, LDUK members contributed to a big media drive with many of us featuring in local and national publications telling our stories.
- In October 2013, a number of group members went to a Public Health England Lyme Disease Conference held in London. The Countess of Mar, a member of the House of Lords, opened the conference and specifically asked Dr Brooks and Dr Dryden to review and reply to the 59 questions LDUK group members had prepared and sent in advance. We hoped that this would encourage dialogue between PHE and our patient group and the questions were answered.
- In December 2013, we were nominated for several Wego Health Activist Awards including Best in Show: Community/forum and Best in Show: Facebook.
Group members have made lasting friendships and met up not just in the UK but across the world at various Lyme treatment clinics. The value of making new friends who have had similar experiences as you, understand what you’re going through and who provide real support, is priceles