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lymediseaseaction.org.uk
Lyme Disease Action
@lymediseaseaction.org.uk
93 followers 71 following 81 posts
The longest established UK charity working on Lyme disease and associated tick-borne diseases. Accredited to the PIF Tick UK quality mark for trustworthy information. www.lymediseaseaction.org.uk
Posts Replies Media Videos
lymediseaseaction.org.uk
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
liverpooluni.bsky.social University of Liverpool @liverpooluni.bsky.social · Nov 10
1 in 5 people are experiencing pain, and in the UK over 34% of adults regularly experience chronic pain.

@benedictneuro.bsky.social and Prof. Michelle Briggs @lincneurosci.bsky.social discuss on the latest episode of Original Ideas 🧠💡🎙️▶️ liverpool.ac.uk/research/original-ideas/neuroscienceandpain/
January 14, 2026 at 1:24 PM
Reposted by Lyme Disease Action
patientsafetylearning.org
New blog on the hub this week - When lived experience is embedded at every stage of research.

Link: www.pslhub.org/learn/patien... #patientsafety
On a white rectangle green text at the centre says: "I've seen that when lived experience is woven into research from the very beginning, the work changes in profound ways". In the bottom right hand corner is a small green logo that says: Patient Safety Learning.
January 8, 2026 at 11:45 AM
lymediseaseaction.org.uk
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".
January 8, 2026 at 4:16 PM
Reposted by Lyme Disease Action
pifonline.bsky.social
🌟 @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
January 5, 2026 at 12:45 PM
lymediseaseaction.org.uk
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...
Light Relief | Lyme Disease Action
www.lymediseaseaction.org.uk
December 25, 2025 at 4:56 PM
lymediseaseaction.org.uk
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...
Chief Medical Officer’s annual report 2025: infections
Professor Chris Whitty’s annual report considers trends, successes and challenges in preventing and treating infectious diseases.
www.gov.uk
December 10, 2025 at 2:20 PM
Reposted by Lyme Disease Action
pifonline.bsky.social
🌟 @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
December 10, 2025 at 10:41 AM
lymediseaseaction.org.uk
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
arc-west.bsky.social NIHR Applied Research Collaboration (ARC) West @arc-west.bsky.social · Nov 28
🧭Are academic and community researchers on the same journey?

Our new blog explores insights from journey mapping with both groups.

Key themes:

🗣️ Communication
🎓 Training
🤝 Power sharing

Addressing these challenges will help move towards genuine collaboration.

arc-w.nihr.ac.uk/research-jou...
Research journeys of academic and community researchers - ARC West
Are academic and community researchers fellow travellers or just moving in the same direction? In this blog, the team behind the ARC West project to create a co-production community of practice reflec...
arc-w.nihr.ac.uk
November 28, 2025 at 12:14 PM
Reposted by Lyme Disease Action
pifonline.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
A bright blue background. In the top left text reads: How to find trusted health information on social media. In the top right is the PIF TICK logo. In the bottom left is a cut out of a poster about social media. To the right, text reads: PIF tips include: look beyond likes, look for trusted channels, who shared this, look for trust marks
November 27, 2025 at 1:25 PM
lymediseaseaction.org.uk
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.
www.biorxiv.org
November 11, 2025 at 2:17 PM
lymediseaseaction.org.uk
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
The Inquiry - Why are more people getting Lyme disease? - BBC Sounds
Lyme disease is becoming more common. But what’s driving that?
www.bbc.co.uk
October 29, 2025 at 7:13 PM
lymediseaseaction.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.
ippin.bsky.social International Patient and Public Involvement Network @ippin.bsky.social · Oct 27
How do you see AI fitting into the future of PPI storytelling? And what safeguards or opportunities do you think matter most?

Read the latest IPPIN blog post from Patrick Toland - 'Patient Voices in the Age of AI: Opportunity or Visibility Theft?'

intppinetwork.wixsite.com/ippin/post/p...
October 27, 2025 at 8:54 PM
Reposted by Lyme Disease Action
pifonline.bsky.social
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
A screengrab from YouTube showing four video thumbnails. Top left is a still from a video called Careers in the pharmaceutical industry with a man talking to the camera.Top right is a video called Why the pharmaceutical industry works with patients with a man with folded arms looking at the camera, not smiling.Bottom left is a video called Why NHS data is important for medical research with a woman talking to the camera, and bottom right is a video called The clinical trial process with the same woman facing the camera, not smiling.
October 10, 2025 at 10:23 AM
lymediseaseaction.org.uk
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
forestresearchuk.bsky.social Forest Research @forestresearchuk.bsky.social · Oct 14
🌳 How do new woodlands shape wellbeing and sense of place?

Research led by Dr Beth Brockett at Forest Research found communities see local tree planting as good for both nature and people.

🔍 Learn more: ow.ly/kLaK50XaSGB

#WoodlandCreation | #SocialScience
New woodland offers unique social benefits to local communities - Forest Research
Forest Research explored views and benefits of tree planting and woodland creation.
ow.ly
October 14, 2025 at 10:18 AM
Reposted by Lyme Disease Action
pifonline.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...
Bright blue background. On the left reads: Health information you can trust with a woman holding the PIF TICK. On the right it reads: Search our certified PIF TICK creators by health topic on piftick.org.uk. Underneath are check boxes that read: Evidence-based. Up-to-date. Easy to use and understand.
October 6, 2025 at 12:21 PM
lymediseaseaction.org.uk
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
gpollara.bsky.social Gabriele Pollara @gpollara.bsky.social · Oct 1
Host-directed therapies for infectious disease are here & coming!

Simple equation proposed to consider best interventions:
⭐ Microorganism + immune response = clinical presentation/status ⭐

Will require futuristic-sounding real-time diagnostics = exciting!

#IDSky #MedSky #ImmunoSky #TBSky
The Changing Paradigm in Infectious Diseases - Host-Directed Medicine: Implications for the Next Generation of ID Physicians
academic.oup.com
October 2, 2025 at 1:43 PM
lymediseaseaction.org.uk
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.
adamjkucharski.bsky.social Adam Kucharski @adamjkucharski.bsky.social · Oct 1
At our recent @lshtm.bsky.social event on misinformation, Chris Whitty gave some useful reflections on common causes and some important considerations for handling it.

Full event: www.youtube.com/live/H_nClQ2...
October 1, 2025 at 12:59 PM
lymediseaseaction.org.uk
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.
September 28, 2025 at 9:08 PM
lymediseaseaction.org.uk
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.
September 28, 2025 at 8:31 PM
lymediseaseaction.org.uk
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
rckjnsn.bsky.social Rick Jansen 🍉 @rckjnsn.bsky.social · Sep 28
“Many infectious disease experts don’t believe borrelia can survive blasting by doxycycline“

#Doxycycline is a #bacteriostatic, it does not kill, but prevents bacteria *replicating*. Eradication is by your own immune system. If that fails you do not get rid of #borrelia #lyme
September 28, 2025 at 5:45 PM
lymediseaseaction.org.uk
All change. Hope this new team can deliver www.gov.uk/government/n... @nationalvoices.bsky.social
Joint executive team to be set up across DHSC and NHS England
New joint executive team marks next steps of the transition to one organisation.
www.gov.uk
September 19, 2025 at 10:57 AM
Reposted by Lyme Disease Action
pifonline.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
A mid-green background. At the top is a large speech bubble with the text: PIF member webinar Multimedia health information 15 October 2025. In the bottom right is an illustration of a woman leading a webinar. In the bottom left text reads: Book your place: pifonline.org.uk/training-events/
September 16, 2025 at 9:51 AM
lymediseaseaction.org.uk
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.
September 16, 2025 at 10:58 AM
lymediseaseaction.org.uk
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.
September 15, 2025 at 10:20 PM
lymediseaseaction.org.uk
Interesting line up of speakers for this important topic. www.lshtm.ac.uk/newsevents/e... Something that @pifonline.bsky.social are tackling.
Health Misinformation: UNPACKED | LSHTM
Leading misinformation experts from LSHTM and other universities, the media, NGOs, and government will share their understanding of health misinformation challenges and discuss potential
www.lshtm.ac.uk
September 5, 2025 at 10:53 AM