Lyme Disease Action
@lymediseaseaction.org.uk
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
Reposted by Lyme Disease Action
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
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
November 27, 2025 at 1:25 PM
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
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.
www.biorxiv.org
November 11, 2025 at 2:17 PM
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
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
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.
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...
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
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.
Reposted by Lyme Disease Action
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
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
October 10, 2025 at 10:23 AM
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
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
🌳 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
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
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
Reposted by Lyme Disease Action
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...
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...
October 6, 2025 at 12:21 PM
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...
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
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
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
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.
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...
Full event: www.youtube.com/live/H_nClQ2...
October 1, 2025 at 12:59 PM
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.
We supported this powerful @theguardian.com piece on Milly’s fight for a Lyme diagnosis. Her story shows why the UK urgently needs better testing, awareness & research. Read here www.theguardian.com/world/2025/s...
#LymeDisease @patrickbarkham.bsky.social
#LymeDisease @patrickbarkham.bsky.social
As my daughter got sicker and sicker, our quest for answers dragged on. How did we all miss the bacteria taking over her body?
I write about nature, but when Milly got sick with a mystery illness, it never occurred to me that a long-forgotten tick bite could be the cause
www.theguardian.com
September 28, 2025 at 9:08 PM
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.
September 28, 2025 at 8:31 PM
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
“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
#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
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
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
All change. Hope this new team can deliver www.gov.uk/government/n... @nationalvoices.bsky.social
Reposted by Lyme Disease Action
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
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
September 16, 2025 at 9:51 AM
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
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.
September 16, 2025 at 10:58 AM
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.
September 15, 2025 at 10:20 PM
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.
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
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.
@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.
September 5, 2025 at 10:45 AM
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.
@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
*look
September 4, 2025 at 8:17 PM
#Ticks and #tick borne diseases next perhaps? @bethpurse.bsky.social @geoffreycoxmp.bsky.social @smhopkins
Reposted by Lyme Disease Action
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.
Feedback from participants highlights how valuable this process can be for individuals, and for shaping future research.
September 3, 2025 at 10:45 AM
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.
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
🚨 New paper 🚨
How does livestock grazing impact tick-borne disease hazard? Our new study in the New Forest National Park used a paired experiment to find out.
Important for #rewilding and #conservation grazing schemes!
#Ticks #LymeDisease @ukhsa.bsky.social
www.sciencedirect.com/science/arti...
How does livestock grazing impact tick-borne disease hazard? Our new study in the New Forest National Park used a paired experiment to find out.
Important for #rewilding and #conservation grazing schemes!
#Ticks #LymeDisease @ukhsa.bsky.social
www.sciencedirect.com/science/arti...
The role of large ungulate grazers on Ixodes ricinus and tick-borne pathogens in the New Forest - a case study for future rewilded landscapes
Large ungulate grazers can manage habitats via conservation grazing, a practice using livestock to control vegetation growth, which has many ecologica…
www.sciencedirect.com
August 30, 2025 at 5:48 PM
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
August 20, 2025 at 1:10 PM
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/...
Rare tick detected in Oxford | Lyme Disease Action
www.lymediseaseaction.org.uk
August 12, 2025 at 8:22 PM
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 ?
New research from @gomes-solecki.bsky.social and team on using immunoglobulin class and IgG isotypes to distinguish different stages of Lyme disease. Could help identify early Lyme cases which are often missed by current serology tests. journals.asm.org/doi/10.1128/...
Class and isotype of VlsE-specific antibody differentiates Lyme disease stage | Journal of Clinical Microbiology
The order of switching between the immunoglobulin heavy chain (Fc) is time dependent,
progressing from IgM/D to IgG3/IgG1/IgA1/IgG2/IgG4 and later to IgE/IgA2. In this
study, we show that B. burgdorfe...
journals.asm.org
August 4, 2025 at 8:42 PM
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.
excellent!@healthfoundation.bsky.social has produced a strong and thoughtful critique of the govt NHS 10 year plan - strong on abolition of Healthwatch and Governors too! www.health.org.uk/reports-and-... @careopinion.org.uk @patientlibrary.bsky.social @davidjbuck.bsky.social @felly500.bsky.social
August 4, 2025 at 8:25 PM
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.