2020 was a difficult year for many. At times, life has seemed at a standstill whilst the pandemic has raged all around us.
In the 2019 version of this blog, we remarked on how 2020 looked set to be a game changer of a year in terms of the profile of Lyme disease. After a year of important research discoveries, workshops and other activities, it certainly promised to be. The arrival of the coronavirus put paid to many exciting plans – however, they also provided opportunities to forge new paths.
Read on for our year in review, looking back at the charity’s key activities and successes in 2020, which are largely thanks to you – our supporters and donors.
We’ll also look at the key developments and news from within the Lyme community.
In 2020, Caudwell LymeCo and its supporters raised over £33,000 towards Lyme disease research. We are so grateful to those who made this possible, as many charities saw a significant fall in income.
- reached over 580 people with our free Lyme awareness talks after moving them online – well over twice the amount we reached last year.
- helped over 200 people through our patient information and advice service.
The year began with news from across the pond that Canadian pop start, Justin Bieber, had Lyme disease.
This created a flurry of interest on Lyme in the media, and Rosie was invited to speak about it on BBC Radio Stoke.
The report from the Lyme disease research workshop in Nov 2019 was finally published by RIPL (Rare and Imported Pathogens Laboratory). This was hosted by Public Health England and the Health Protection Unit for Emerging and Zoonotic Infections. Patient groups and charities such as Caudwell LymeCo were invited to share their research priorities.
Rosie delivered the first awareness talk of the year to The Outrigger Club in Staffordshire – the last in-person talk for some time!
We met with Public Health England to discuss our support and involvement in Lyme disease research.
We also welcomed new Trustee, Jo Seabright, who was a massive support in 2019. You can check out our Trustees here.
February bought the first of our virtual quizzes! This was before the lockdown Zoom quizzes took over……
Rosie was interviewed for Pharmafield website and magazine about Lyme disease and how the pharmaceutical industry could support the fight for better treatments.
You can read the interview here.
As the UK went into lockdown, we moved our awareness talks online, in anticipation of many outdoor organisations having more spare time for their staff!
A study out of Stanford University found that antibiotic azlocillin was found to be effective in eliminating the bacteria that causes Lyme disease when tested on mice – perhaps more effective than doxycycline.
In April we delivered our FREE Lyme disease awareness and education talks, to staff and volunteers at The Woodland Trust, Forestry England and Staffordshire Wildlife Trust, with great feedback.
To find out more or book a talk in your community – or to become a volunteer and deliver talks yourself – visit our talks webpage.
A new study was published on the increase of cases of Lyme disease in the UK. Like the paper published by BMJ Open in the Summer of 2019, it provided evidence of increasing annual incidence of Lyme disease, and that the number of cases diagnosed in primary care is notably higher than the those officially confirmed via laboratory testing.
And this was the month where fundraising took an exciting turn with the 2.6 Challenge.
Our supporters helped raise well over £2,000, including Milly Flynn (right) who ran a 26 minute online fitness class.
May was busy as we carried out our special content for Lyme Awareness Month.
This included a blog from some of the top nutritionist clinics on the impact of diet against Lyme disease, a Q&A with UK Lyme researcher, John Tulloch, and tips from a psychologist on dealing with mental health when chronically ill.
We supported Wear Lime for Lyme Day and it was great to see all the photos shared on social media.
We reached over 25,000 people with our awareness-raising posts on social media throughout the month.
May was also when we launched our partnership with Kidunk Clothing, and when singer and Lyme patient, Toby released his charity single, raising funds for Caudwell LymeCo and LDUK.
June saw Caudwell LymeCo volunteer, Justine Shuttleworth feature on BBC Radio 4 show One to One.
The series is about taking control of your life when faced with a crisis. Justine became ill six years ago and over the course of 18 months, saw 14 doctors, nine psychiatrists and a hormone specialist. Eventually she was diagnosed and treated for Lyme disease.
In the episode, she shares her experiences and describes how she regained control of her life. You can listen to it here.
Caudwell LymeCo wrote an article abut Lyme disease for Singletrack Bike Magazine.
We noticed that ticks and Lyme disease were often discussed in their forum and wanted to make sure they had the correct information available for their followers.
With over 2,000,000 visitors to their website each month, we were grateful for such a fantastic opportunity to raise awareness with people who likely spend lots of their time outside and on trails.
In July, we launched Walk, Ride or Climb for Lyme – our first ever virtual challenge. This was in response to the cancelled events across the UK because of the coronavirus pandemic. During the month, 73 year old Sandie Clements walked a mile every day, after recovering from a fractured spine and sciatica.
We also launched the Tick Detectives resource with Kidunk – a free downloadable fact sheet about Lyme, written especially for young children, with their input. This was sent out digitally to thousands of nurseries and forest schools. We hope to roll out hard copies ready for Spring/Summer 2021.
Rosie featured on Lake District Radio to talk about Lyme disease. She also delivered free talks to two running clubs, and another Wildlife Trust.
We contributed to an article for a feature in a trail running magazine.
And another UK study was published, this time on understanding the decision making of GPs when it comes to diagnosing Lyme disease. As suspected, this showed a lack of confidence and a reliance on blood testing from medical professionals, showing the importance of further research and education – and a better test!
In August, Public Health England (PHE) released news confirming the diagnosis of a patient with babesiosis, the first recorded case from ticks in the UK.
A second patient has also been admitted to hospital with a probable case of tick borne encephalitis (TBE) – the second case recorded.
Though these are the first officially recorded cases, there will be others who have not been diagnosed.
We also launched a partnership and social media campaign with SimplyV, who provide Tick Twister tools here in the UK. They donated 10% of their sales during August to our charity’s research fund.
We welcome new Trustee, Emma Sandbach to our board this month – Emma is a public health consultant with a background in epidemiology, so her experience will be invaluable when considering future research plans.
We also had some fantastic fundraisers for Walk, Ride or Climb for Lyme. The North Coast Numptys – a group of 7 young men – took on an epic 500 mile ride across Scotland and raised over £12,000!
We also had the support of a returning fundraiser in Chris Sergeant. He took on a 300km mile loop cycle ride in 1 DAY, between Richmond Park and New Forest – two hot spots for Lyme. He completed the challenge and raised well over £2,000.
And Milly Flynn fundraised for us again, running 75km in a month to raise will over £1,000 again!
In September, we published a free, downable rash resource for Lyme patients (and doctors!).
This was in response to the increasing number of people who were having their rashes diagnosed via virtual appointments with their GP.
We were hearing of misdiagnoses, and knowing how tricky it might be to decipher the rash from a photo, we created the document to give patients some solid information on the erythema migrans rash.
We also went through the questions they might expect from a doctor to ascertain the cause of their mark, so they can have the relevant information to hand for their appointment.
The resource has since been downloaded over 150 times. We hope this will come to be a useful resource in peak tick season for 2021.
We had more fantastic fundraisers this month. Millie Bromley-Davenport ran the RightMove marathon and raised over £2,200 for Caudwell LymeCo and Mind.
And we had some more Walk, Ride and Climb for Lyme Legends, including the Dutfields who took on all three activities, and 3 year old Mable who went on a hike with her dad and her dog!
If you’re interested in fundraising for us in 2021 – get in touch with us at firstname.lastname@example.org or visit our Fundraise For Us webpage.
This month, we shared the exciting news that we would be launching our own independent research programme for Lyme disease.
After meeting with the Department of Heath and Social Care in Sep 2019 to discuss co-funding a project into Lyme disease diagnostics, we were awaiting their latest government spending review and budget. These were delayed because of Brexit, and then pandemic hit, putting a stop to the talks continuing.
We didn’t want to delay life-changing research for any longer than necessary, so we made plans to strike out on our own and get things moving.
After months of hard work, we had the necessary steps in place, and will be opening up for applications to our Innovation fund in later Jan 2021. Read more about our plans for research here.
We haven’t given up on working with the government and lobbying for them to invest in research. We will pick this conversation back up with them once the pandemic is over.
We also delivered an awareness talk to over 40 staff and volunteers at Gloucestershire Wildlife Trust.
And a clinical study conducted by U.S. practitioner Dr. Richard Horowitz found that an eight-week course of the proven leprosy drug dapsone, combined with doxycycline and rifampin, was effective in improving symptoms in 98% of patients suffering from chronic Lyme disease.
It’s thought that the dapsone combination therapy helps to break down the biofilms that protect the Borrelia bacteria.
Further trials are needed to confirm its effectiveness, but could this exciting discovery have the potential to relieve suffering of millions of late stage Lyme sufferers across the world?
November saw the amazing Monologues For Lyme campaign. Run by international voice coach, Rachel Preece, this was a month-long sharing of music and acting performances from TV, movie and West End actors with the aim to raise awareness of Lyme disease.
Rachel caught Lyme in 2019 after pruning a tree in her mother’s garden in Ross-on-Wye. She called the Caudwell LymeCo helpdesk for support after she failed to get the right treatment from her doctor.
As a thank you and to help spread the word, she set up the campaign and raised almost £1,300.
You can see the performances on the Monologues for Lyme Facebook page.
During this month, we became a registered member of the Association of Medical Research Charities (AMRC), which is a hallmark of high quality research – another important step towards our work.
And a study from Yale University was published after scientists found a protein with the human body that can protect it from Lyme disease.
The scientists claim that stimulating the boost of the protein within the body could help fight the infection, and that the findings in general could also help diagnosing the disease.
BBC’s Morning Live ran a feature on the threat of Lyme disease to dogs and humans – and how the risks are increasing throughout winter. They shared the story of Louise and her dog, Poppy. Both caught Lyme from tick bites whilst out walking, but whilst Poppy recovered, Louise was still ill 7 months on.
We contacted the programme makers to see if we could help her. Though it is always sad to see stories of Lyme, we are glad to see awareness raising features on mainstream TV.
We delivered online awareness talks to Sussex and Suffolk Wildlife Trusts – our sixth and seventh Trust of the year.
And a new study was published which gave further evidence of what many have thought for some time – that Lyme disease can alter the body’s immune system and make some more susceptible to autoimmune disorders.
THANK YOU TO EVERYONE WHO HAS SUPPORTED, FUNDRAISED OR DONATED TO US IN 2020.
Our future plans for 2021
After a year of uncertainty and delay for many of us, we are so excited to be giving our first grants for research in 2021.
Our research priorities fall to testing and treatment, as we feel this are the biggest areas in terms of impact for patients.
This is likely to be a long and difficult process, but we hope this can be the beginning of exciting research work here in the UK.
We do this for the many Lyme patients suffering now, and to help protect those future victims.
We also aim to deliver more free awareness talks across the UK, expand our fundraising events programme, and recruit more volunteers and ambassadors to help support our cause and raise the profile of Lyme disease and its sufferers.
How you can help
There are many ways you can get involved and make a difference to our research and awareness work.
If you would like to donate, you can do it here.
If you would like to become a LifeLyme member, you can do that here.
If you would like to volunteer to deliver talks, fundraise, or be an ambassador for Lyme in your community, please get in touch with us here.
To discuss other ways of getting involved, contact Rosie Milsom on 07342 882111 or email email@example.com.