🧠 Brain fog is one 🔝 challenging symptoms of lupus, yet there was no specific way to measure it... Until now!
Prof @lupusreference & our Chair @jeanette_lupus explain the new Lupus Brain Fog Severity Scale #LBFSS.
Lupus Europe is proud to have contributed to its development
✅ Comparison of #LBFSS - #Lupus #BrainFog Severity Scores in 378 lupus participants with and without brainfog 🌪🌩🦋 The median LBFSS value is 25 (in the 0-52 score) in those with brainfog, which is really easy to remember 👍 DOWNLOAD the full study 📥 at https://doi.org/10.1136/lupus-2026-002148
✅ Interested in knowing more about #brainfog in #lupus? And more particularly about the use of the #LBFSS? Check our video below as well as table 3 in the openaccess paper at https://lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
- Do you have #LUPUS? 🦋
- Do you have #BRAINFOG? ⛈
- If so, check the Lupus Brainfog Severity Scale (#LBFSS)
- Using table 3 you can assess the SEVERITY of your brainfog and compare with others
🔓 OPENACCESS FREE LINK: https://doi.org/10.1136/lupus-2026-002148
✅ Our novel @ERN_ReCONNET #ELICIT methodology is published!!!! 👍 #ELICIT is an innovative approach to gather #CONSENSUS 🤝 on complex, 'high-level' concepts related to rare connective tissue and musculoskeletal diseases 🔥
Openaccess 🔓 DOWNLOAD at: https://doi.org/10.1186/s13023-026-04502-3
AI as a partner in care. LupusGPT , free, multilingual, 189 countries, 65k questions answered. And when it doesn't know? It says so.
Multilingual ; codesign ; that's what makes the difference. Bravo @LupusEurope 👏 This needs to become the standard.
#EULAR2026 #DigitalHealth
✅ #SLAKE is still open!
🦋How well do you understand #lupus?
Try #SLAKE: a 15-minute quiz created by Prof @LupusReference & the SLAKE team with major support from @LupusEurope & @ern_reconnet.
✔️20 languages
✔️Different questions every time you use it
https://maladie-autoimmune.fr/SLAKE/
🤩Great milestone for the 41.7% of patients who, according to our Swiss Knife survey, live with brain fog.
🧠Proud to have contributed to the work behind the first lupus-specific tool to assess brain fog in SLE.
🎉 Congratulations, Prof @Lupusreference and the whole LBFSS team!
🚨 Very happy to report that the #Lupus #BrainFog Severity Scale (#LBFSS), the first lupus-specific patient questionnaire specifically designed to assess brainfog in #SLE has just been published 🦋 Check the pdf and assess your brainfog 💪🧠👀🌧
📥LINK: https://lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
🧠 Brain fog is real.
For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.
✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.
🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.
🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.
lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
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🦋 Understanding lupus is crucial for effective management and self-management.
💁♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.
🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?
𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗
🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.
📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an overall knowledge score
💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.
📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.
These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.
SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.
🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.
🔗 Complete SLAKE today and let us know what you think!
lupusresearch.limequery.org/775349
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☀️ As we close our #LupusUVprotection campaign, here is one important reminder:
👉 UV protection in lupus is not only about sunny beach days.
😶🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.
‼️ That is why clear, reliable information matters.
Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:
🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
lupus100.org/en/questions/can-i-sunbathe-with-lupus
Created with lupus experts & patients. Available in 19 languages.
🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
lupusgpt.org/
🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
Like LupusGPT, but designed to make the answers even easier to understand:
easy.lupusgpt.org/
🦋 Because lupus does not only affect clinic appointments. It affects everyday life.
✅ Stay informed. Ask questions. Use reliable resources.
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✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in #SLE.
🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.
🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.
🤔 But what is DORIS?
DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.
🐠 DORIS+ builds on that foundation and explores the concept of deep remission.
💁♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.
This matters because remission is an important concept for research, clinical care and people living with lupus.
🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.
😃 We will keep you updated!
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