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Long COVID is the first illness in history to be defined by patients who came together on social media. Biocode CEO, Este Burger, talks about the revolutionary role of patient advocacy in defining Long COVID, and explains the important role that patient accounts play in Biocode’s Long COVID research. If you are a Long COVID sufferer and wish to share your story with us, follow this link in our bio: https://lnkd.in/digQaUBZ Este Marié Burger

This is a long post but everyone should read it. Because you are either affected by “Long COVID” or you know someone who is, even if it doesn’t have this label yet. Millions are suffering silently with “Long COVID“ symptoms months or years after having COVID. Others are not affected at all, making this undefined mix of fatigue, respiratory, neurological, cardiovascular, loss of brain function, malaise, tinnitus, etc a hard condition to pin down. This also means many sufferers second- guess themselves, especially when many doctors and even specialists tell you ‘it’s all in your head’. There are those who have totally lost their ability to work, and the many who have taken on some or all of these potentially debilitating symptoms just as ‘fatigue’ or ‘aging’ or just the ‘new normal’. All of us need to know that right in South Africa’s backyard, in Stellenbosch, world-first science is being undertaken that proves the devastating outcomes of post-COVID micro-clotting and its related endothelial damage, and are developing strategies to beat Long COVID. Think about it: your blood turns ‘thick’ with millions of small hedgehog- like clots formed around COVID spike proteins, which then bash into and rip off the inner linings of your blood vessels, which in turn lose their ability to do their job: transport oxygen and nutrients to the far reaches of your body. It is then easy to understand how every major system in your body can be affected. Hence the long and often random list of Post-COVID symptoms that make non-sufferers think we’re making it up. If you need scientific proof, the team has already published a number of peer-reviewed papers. For me, seeing actual images of these micro clots and endothelial debris in my blood was finally proof that this condition is real. A growing international network is now taking this on and building the knowledge and methods to help to overturn this scourge which the OECD estimates will cost the world $1-trillion per year. That is, if one can really put a monetary value on the human toll on individuals, families and business. If you know or think you’re affected by Long COVID, or just don’t feel as well as you were a while back, contact Biocide Technologies. Go and have yourself tested for micro-clotting. You’ll physically see images what is bumping around in your vascular system if you have them. Be an early adopter of the potentially life-changing treatments already available. I did. I already feel the improvement. What have you got to lose?

Antimicrobial Resistance (AMR) is often described as a “silent” pandemic, even though the impact it has is far from silent. AMR is real and is a serious threat to medicine, surgery, and life as we know it today. Improving education, raising awareness, and implementing national action plans regarding AMR should be a priority, both on a personal, national and international level. A belated thank you to European Patients' Forum for organising such an impactful training, engaging young patients in critical discussions regarding Antimicrobial Resistance (AMR). From insightful discussions with experts in the field, to inspiring strategy training, STYPA 2024 has deepened our understanding of AMR and equipped us with the necessary skills to advocate for this cause. The EPF Youth Group #AMR #STYPA2024 #EuropeanPatientsForum #PatientAdvocacy #Healthcare #SilentPandemic #NationalActionPlans

The 8️⃣th edition of the Skills Training Course for Young Patients (#STYPA2024) meeting has come to an end! 🎉     During the training on 4th-7th July, young participants delved into critical discussions on Antimicrobial Resistance (AMR), sharing their insights and experiences.      Some key takeaways included:    💡 The impact of AMR on patient communities.  💡 Strategies to raise awareness about AMR.  💡 Planning effective advocacy campaigns.    In the coming months, participants will take part in workshops and webinars to follow up on their projects.    Read more about this initiative 👉 https://bit.ly/3VRKKXN    #AntimicrobialResistance #AMR #PatientAdvocacy #YouthEmpowerment

A huge thank you to European Patients' Forum for organizing such an impactful training, where young participants engaged in critical discussions on Antimicrobial Resistance (AMR), sharing their insights and experiences. It was an honor to hear from incredible speakers like Gavin S. who emphasized the importance of involving patients in every stage of developing digital tools to ensure they meet real patient needs. Also, Vanessa Carter, an AMR Patient Survivor, shared her powerful story of resilience and activism, inspiring us to act now and create change. The interactive sessions, including an insightful agora with experts, deepened our understanding of AMR and equipped us with valuable knowledge. Antimicrobial Resistance is a silent pandemic that needs urgent attention. It is imperative that all countries develop and implement national action plans now because this is an emergency that affects us all. 🌍💪 #AMR #STYPA2024 #EuropeanPatientsForum #PatientAdvocacy #Healthcare #SilentPandemic #NationalActionPlans

Yesterday was World Myositis Day. Did you know this observance has roots in the US dating back to 2006? TMA proudly partners with worldwide patient advocacy organizations to drive myositis awareness. TMA initiated "National Myositis Awareness Day" to be observed each year on September 21 as a way to drive awareness of these rare diseases among the public. A 2006 proclamation by the US House of Representatives endorsing National Myositis Awareness Day capped a years-long effort by TMA. While TMA expanded awareness efforts to the month of May as Myositis Awareness Month, September 21 continued to be observed. Learn more about World Myositis Day on TMA's website. https://lnkd.in/e9jZmJ2B #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda #MyositisAwareness #MyositisAwareness2024 #AwarenessForMyositis #WorldMyositisDay

How can we empower patients and boost patient advocacy towards Antimicrobial Resistance (AMR)? 🏥💊 🗓 On 20 June 2024 (3 - 4pm CEST), the European Patients’ Forum (EPF) and The AMR Narrative will host the webinar “Patient Advocacy on AMR in the EU: where do we begin?”. This will be the first of a series of 3️⃣ webinars on the impact of AMR on various patient groups in the EU and will serve as a platform for dialogue driven by patient organisations to support advocacy efforts. 💬 Join the discussion on: 👉 How are patient communities impacted by AMR? 👉 What interventions or ideas could be used to boost patient advocacy on AMR? 👉 What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone. Register here ➡ https://bit.ly/4bPAAxn

Cholangiocarcinoma can be hard to explain, so our Cholangiocarcinoma Foundation team works on ways to simplify information so we can educate the community about symptoms, diagnostics, talking to your provider, treatments, and more. As part of CCA Awareness Month, we developed this one-pager: https://lnkd.in/guJBYD-X. We encourage you to become familiar with it, and if you are interested in advocacy, please consider sharing it in your communities. You can get ideas on where to share it via our toolkit (https://lnkd.in/gWAtKfwH) #beclearoncca #ccaawareness #ccahope #cholangiocarcinoma #patientadvocacy

How can we empower patients and boost advocacy towards Antimicrobial Resistance (AMR)? On the 20th of June 2024, between 3pm - 4pm CEST, the European Patients' Forum (EPF) and The AMR Narrative will jointly host a webinar titled, “Patient Advocacy for AMR in the EU: where do we begin?”. This will be the first of a series of 3 webinars on the impact of AMR in terms of various patient groups in the EU and will serve as a platform for dialogues driven by patient organisations to support advocacy efforts. Join our discussion around: - How are patient communities impacted by AMR? - What interventions or ideas could be used to boost patient advocacy on AMR? - What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone both in the EU and globally. Register for the webinar here: https://lnkd.in/eBa6ZvDD #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy

🙋🏻♂️ Evidence-based advocacy has become a key topic for patient organizations across Europe. This toolkit from EURORDIS-Rare Diseases Europe is bringing practical advice to collect patient experience. #advocacy #rarediseases #healthcare