Approach your GP carefully if worrying about #Lyme disease. They know there is a lot of poor info on the internet, so stick to facts and have a look here first www.lymediseaseaction.org.uk/resources/se...

Gosh - all those familiar faces who helped us from May 2010 all the way through to publication in Jan 2013! Huge thanks to you all for keeping going and growing and strengthening the JLA to where you are now.

Pain systems in the brain light up when people are rejected. Would this amplify pain of people with post treatment #Lyme disease? They are rejected, not investigated & not even considered to have a real problem. @liverpooluni.bsky.social seems to have abandoned the area. @benedictneuro.bsky.social

New blog on the hub this week - When lived experience is embedded at every stage of research. Link: www.pslhub.org/learn/patien... #patientsafety

Worth noting that health organisations accredited to the @pifonline.bsky.social #PIFTick have proved that they have "obtained, recorded and referenced up to date, relevant and trustworthy evidence sources".

🌟 @lymediseaseaction.org.uk is now PIF TICK re-certified. This means its health information continues to be: - Evidence-based - Up-to-date - Easy to use and understand Get PIF TICK certified: pifonline.org.uk/pif-tick/how... #HealthInformation #PIFTICK

Happy Christmas to everyone out there and here's looking forward to some research insights on #Lyme disease in 2026. If you didn't know how a sheep #tick could disguise itself at Christmas, try this jigsaw. Best on tablet or PC. www.lymediseaseaction.org.uk/what-you-can...

Don't know where we'd be without brilliant @pdfsam.org Just used it to split out #tick-borne disease specific parts of Chris Whitty's CMO annual report for circulation. Gets 38Mb into something more easily readable, esp on mobiles! www.gov.uk/government/p...

🌟 @encephalitisint.bsky.social is now PIF TICK re-certified. This means its health information continues to be: - Evidence-based - Up-to-date - Easy to use and understand Get PIF TICK certified: pifonline.org.uk/pif-tick/how... #HealthInformation #PIFTICK

A real challenge is the start of the journey. #Researchers are signposted by their university department interests. #Patients are signposted by their (sometimes desperate) needs for solutions. Often the paths never even cross. @jameslindalliance.bsky.social

Social media can be a great way to find health information, but there are risks when using and sharing content. Our updated guide for the public gives tips on how to find trusted health information on social media. Download at piftick.org.uk/guide/how-to... #PIFTICK #HealthInformation

Now we know when we have the best chance of collecting nymph #ticks for demo - at night, in November, when it's damp! Wonderful study - big thanks to the persisting researchers. @hannahvineer.bsky.social www.biorxiv.org/content/bior... Night hunting #cats need continued tick protection.

BBC World Service asks 4 experts about #Lyme disease. www.bbc.co.uk/sounds/play/... First quick summary fails to say it was a mother, Polly Murray, who pushed for investigation of the arthritis outbreak in Connecticut. Why are patients always brushed aside? @patients-association.org.uk

AI can gather stories in the blink of an eye. But from where? Only from stories all ready digitally told. Potentially useful (many of them) but potentially misleading, so safeguards on context and date are vital.

Topics from the use of health data for research to the medicines supply chain are explained in a new set of videos from @abpi.bsky.social. The series of short clips cover key topics central to the ABPI work and mission. Head to their YouTube page to see the full list here: lnkd.in/ecCH_hPN

To bring people outdoors is undoubtedly good for their mental health. We do need to make people aware of #ticks and #Lyme disease in a way that does not put them off outdoor activity @newforestnpa.bsky.social @saragandy.bsky.social @bethpurse.bsky.social

We are very happy to announce the new-look PIF TICK website is now live. The revamped PIF TICK website helps people find trusted health information and avoid dangerous misinformation. See the updated PIF TICK website here: piftick.org.uk Read the news story here: pifonline.org.uk/news/pif-tic...

Paper for consideration by those looking at post treatment #Lyme disease. #Lyme arthritis solved, so what about other manifestations caused by interaction of #Borrelia with #immune system? Any #research interest out there thinking of #PPIE? (said more in hope than expectation). @nihr.bsky.social

He also emphasised that uncertainties must be acknowledged, or trust is lost. You cannot reach people (to inform on misinformation) if they do not trust you.

A mistake to support it perhaps, as not fair to encourage people to spend money on those T-spot tests which have been shown not to be useful. A desperately sad story, and we do need more UK research.

It doesn't help, does it. Really sorry for the girl and her family. We have a Reality Check page which mentions that T-spot tests have been shown not to be useful. www.lymediseaseaction.org.uk/about-lyme/r... NB some late Lyme cases can test -ve if immunosuppression, or early inadequate treatment.

Quite right. That is why amoxicillin is recommended by NICE when a second treatment is needed. Point about doxycycline is that it penetrates spinal fluid well and sometimes that is needed. Need #research on UK patients, though, which is not happening @ukhsa.bsky.social @hpruezi.bsky.social

All change. Hope this new team can deliver www.gov.uk/government/n... @nationalvoices.bsky.social

Are you joining our webinar exploring best practice in multimedia health information on 15 October? Speakers include: - @josephfreeman.bsky.social from NHS England - The Worst Girl Gang Ever Foundation - @askawayhealth.bsky.social Book here: pifonline.org.uk/training-eve... #HealthInformation

For infected insect bites it is vital that #pharmacies carefully follow criteria & CKS guidance cks.nice.org.uk/topics/insec... in case of #Lyme disease rash. The antibiotics for infected bites will not cure #Lyme and may make diagnosis harder by affecting later blood test results.

Excellent talk by Prof Chris Whitty @lshtm.bsky.social Health #Misinformation event. Pointing out that doctors, academics, public health must say where there is uncertainty, or they lose trust. In UK #Lyme disease there is a lot of uncertainty and we must acknowledge it or we won't solve problems.

Interesting line up of speakers for this important topic. www.lshtm.ac.uk/newsevents/e... Something that @pifonline.bsky.social are tackling.

This was what we meant to repost. @ukceh.bsky.social @bethpurse.bsky.social @geoffreycoxmp.bsky.social @smhopkins.bsky.social #Ticks and #tick borne diseases next perhaps? TBDs on the rise and public and clinicians not fully aware. Research on UK patients is needed to inform guidelines.

#Ticks and #tick borne diseases next perhaps? @bethpurse.bsky.social @geoffreycoxmp.bsky.social @smhopkins

JLA final workshops are a collaborative space for patients, carers and healthcare professionals to agree on the research priorities that matter most to them. Feedback from participants highlights how valuable this process can be for individuals, and for shaping future research.

Really interesting study- thanks to all of the researchers. @royalforestrysoc.bsky.social @newforestcommoner.bsky.social @moorlandassoc.bsky.social

Need to find #ticks for tomorrow's #MelplashShow nr #Bridport. Land around is v dry but finally, one nymph! Need to show everyone how small a tick is so they can avoid #Lymedisease. Come and get some sane, #PIFTick (no pun!) accredited info. @georgemcgavin.bsky.social @milesking.bsky.social

A report from @ukhsa.bsky.social of a rare tick found in Oxford - Hyalloma marginatum. Climate change is bringing changes, so watch out for strange ticks. www.lymediseaseaction.org.uk/latest-news/...

Sounds as if could also apply to European Borrelia - @anjag-5342.bsky.social ?

Difficult for politicians to take on board that NHS organisations and health professionals do not always know best about health. Some aspects of it, yes, but others, definitely not.

At last stats for #Lyme disease reported cases in 2024. Slightly fewer than 2023, except East of England - big increase from 46 in 2023 to 77 in 2024- more awareness? SW had most cases per head of population by a long way. @ukhsasouthwest.bsky.social @lapdevon.bsky.social www.gov.uk/government/p...

Hope this was based on valid test and he has correct treatment. #Lyme disease is easily curable if treated early but can often be horrendous if not, and worse when you are not believed. Reality check Q&A here www.lymediseaseaction.org.uk/about-lyme/r... @erinbiba.bsky.social @emmajourno.bsky.social

Our library of #References is critical to our #evidence base & it is v good news that the superb #Mendeley Desktop, which we have used for 15 years, is here to stay blog.mendeley.com/2025/07/09/m....

Last week, we exhibited at #HSRUK25 and had a great time connecting with colleagues across the health and social care sector. Many attendees were already familiar with or involved in JLA PSPs, and it was a fantastic chance to introduce others to the impactful work of PSPs.

Not just an ethical imperative, but a clinical imperative that will accelerate research in the right direction @jameslindalliance.bsky.social @ippin.bsky.social @jamesfm55.bsky.social @penarc.bsky.social

Not yet circulating in the UK, but if you are going on holiday to Europe, or elsewhere overseas, be aware, and take an insect repellent with you. It will also deter #ticks!

A bit damper out there and the ticks are on the move. They are part of our #wildlife, but you don't want one on you! We can offer a choice of tools - take your pick. @moorlandassoc.bsky.social @richmondramblers.bsky.social @themessyecologist.bsky.social www.lymediseaseaction.org.uk/what-we-are-...

🌟MISINFORMATION EVENT🌟 Join our @lshtm.bsky.social Health Misinformation: UNPACKED event to hear from leading voices on how to understand and combat the rising tide of health #misinformation in the UK 🗓️ 15 September 2025 ⏰ 13:00-17:00 GMT 📍 LSHTM Get tickets 👉 bit.ly/LSHTMHealthM...

MPs might be interested in a #PIFTick accredited UK charity's view of #Lyme disease. youtu.be/eXfo1DFoU-0 @chrisbloore.bsky.social and @lisasmartmp.bsky.social Maybe let colleagues & @commonshealth.bsky.social know that UK research is needed.

Putting to bed that 'anecdotal tale' especially here in Europe, and confirming for the naysayers that mosquitoes truly are not vectors for the Lyme Disease pathogen. parasitesandvectors.biomedcentral.com/articles/10....

Has our view as a patient organisation dealing with tick-borne diseases changed? When we look out at who we try to converse with, is our view A or have we changed it to B? Find out what we said at the European conference here www.lymediseaseaction.org.uk/latest-news/...

1 in 10 people have been harmed by health misinformation. We are proud to partner with @ipsosintheuk.bsky.social's Ethnography Centre of Excellence to highlight this important issue. Our new film explores the impact of health misinformation – and how we tackle it. www.youtube.com/watch?v=OpCX...

Outdoors in the New Forest, working or walking? You're invited to join @ukhsa.bsky.social study to look at possible exposure to Lyme disease and tick-borne encephalitis virus (TBE). @newforestcommoner.bsky.social @newforestnpa.bsky.social @forestresearchuk.bsky.social @royalforestrysoc.bsky.social

Definitely. The ratio in short-chain acids in the smell of our skin results more or less attractive for ticks. Attractiveness depends too on the starvation of the tick. A good repellent would mimic a “disgusting” combination. This is a fertile field for research

Think you know what a #tick looks like? would you spot this if behind your knee? Awareness is key to avoid #Lymedisease. Check your skin with fingertips! @frptweets.bsky.social @royalforestrysoc.bsky.social