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Lyme Disease Action @lymediseaseaction.org.uk · 6d

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

Gabriele Pollara @gpollara.bsky.social · 8d

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

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Lyme Disease Action @lymediseaseaction.org.uk · 7d

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.

Adam Kucharski @adamjkucharski.bsky.social · 8d

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...

Lyme Disease Action @lymediseaseaction.org.uk · 10d

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.

Lyme Disease UK @lymediseaseuk.bsky.social · 10d

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

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

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Lyme Disease Action @lymediseaseaction.org.uk · 10d

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.

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Lyme Disease Action @lymediseaseaction.org.uk · 10d

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

Rick Jansen 🍉 @rckjnsn.bsky.social · 10d

“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

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Lyme Disease Action @lymediseaseaction.org.uk · 19d

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

Reposted by Lyme Disease Action

Patient Information Forum @pifonline.bsky.social · 22d

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/

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Lyme Disease Action @lymediseaseaction.org.uk · 22d

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.

Lyme Disease Action @lymediseaseaction.org.uk · 23d

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.

Lyme Disease Action @lymediseaseaction.org.uk · 29d

Important to look a cohort detail - did these have an average Lyme disease duration of 6 days? doi.org/10.1016/j.eb... Were they just anxious 'cos of social media? We need follow up of more late diagnosed to find predictors of true PTLDS!

Redirecting

doi.org

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Lyme Disease Action @lymediseaseaction.org.uk · Sep 5

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

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Lyme Disease Action @lymediseaseaction.org.uk · Sep 5

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.

Lyme Disease Action @lymediseaseaction.org.uk · Sep 4

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

Dr Steven White @drstevenmwhite.bsky.social · Sep 4

*look

Reposted by Lyme Disease Action

James Lind Alliance @jameslindalliance.bsky.social · Sep 3

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.

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Lyme Disease Action @lymediseaseaction.org.uk · Aug 30

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

Sara Gandy @saragandy.bsky.social · Aug 29

🚨 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...

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

Lyme Disease Action @lymediseaseaction.org.uk · Aug 20

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

Lyme Disease Action @lymediseaseaction.org.uk · Aug 12

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

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Lyme Disease Action @lymediseaseaction.org.uk · Aug 4

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

Lyme Disease Biobank @lymebiobank.bsky.social · Jul 16

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

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Lyme Disease Action @lymediseaseaction.org.uk · Aug 4

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.

Mark Gamsu @markgamsu.bsky.social · Aug 4

[email protected] 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

Lyme Disease Action @lymediseaseaction.org.uk · Aug 2

Note 39% of cases are "long standing". Essentially these have have no IgM response in the test, but strong IgG. If repeat tests of last year's cases not included, these likely to be new late diagnosed. How are they doing after treatment we wonder?

Lyme Disease Action @lymediseaseaction.org.uk · Aug 2

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...

Common animal-associated infections (England) annual report: 2024

www.gov.uk

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Lyme Disease Action @lymediseaseaction.org.uk · Aug 1

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

Lyme Disease Action @lymediseaseaction.org.uk · Jul 23

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....

Mendeley Desktop is Here to Stay.

We previously announced that Mendeley Desktop would no longer be available for new downloads and installations (more details here). Many of you told us how much you love Mendeley Desktop …

blog.mendeley.com

Lyme Disease Action @lymediseaseaction.org.uk · Jul 9

Yes indeed. Several NHS orgs have #PIFTick accreditation inc NHS England Health Education. Health charities may not be "official" but this verifies we produce only evidence based info. pifonline.org.uk/about-the-or...

Members of the Patient Information Forum (PIF) - Patient Information Forum

PIF is a truly cross-sector organisation. Our membership includes NHS trusts, health charities, international companies, healthcare professionals and more.

pifonline.org.uk

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Reposted by Lyme Disease Action

James Lind Alliance @jameslindalliance.bsky.social · Jul 9

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.

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