We are proud to share a deeply meaningful publication: the final paper co-authored by our late co-founder, Ondine Sherwood. The paper identifies the nine top priorities for Long Covid research. This work honours her legacy and the power of patient-led science. 🧵

This week, the Long Covid Symptom Diary was published in French, with the help of @longcovidbelgium.bsky.social The French version of the diary, titled 'Journal de bord des Symptômes du Covid Long' is now available in all Amazon stores worldwide.

I recently discussed my book, the Long Covid Symptom Diary, with Gez Medinger, for his educative, long-running YouTube series on everything #LongCovid. 🎦 Video: Why Old School Is Best - The Long Covid Symptom Diary Watch it here: youtu.be/VCkh1WRiaAk?...

www.theguardian.com/society/2025... Ondine did such a huge job to get recognition for all with Long Covid👇

This April, the world has one more chance to finalize a pandemic accord that could shape global health security for decades. But we can’t just plan for a next pandemic. We must also reckon with this one. But recovery is still missing from the draft accord. 🧵

Navigating the current political situation in the United States while working remotely for a US-based research-focused organization from the Netherlands is a bit of a nightmare, to put it mildly.. 👀

Last Thursday, I gave a presentation for the Engagement & Inclusion focal area at CWTS | Leiden University about Patient and Public Involvement (PPI) in research, and the topic of accessibility in research overall.

As mentioned before, the Long Covid Symptom Diary is created by and for patients, and this includes the translations of the book. I was happy to work with Long Covid patient and long-term advocate Elizabeth Semper (ACPE) to create this Spanish version of the diary.

🫴 For every Spanish edition of the diary sold, €1 will be donated to Long Covid associations supporting Spanish-speaking communities.

On this #LongCovidAwarenessDay, I stand in solidarity with all Long Covid patients, and those who are working tirelessly to put a spotlight on this debilitating illness.

En este #LongCovidAwarenessDay, me complace anunciar la publicación de la versión en español de The Long Covid Symptom Diary: Diario de Síntomas de #CovidPersistente 🇪🇸

On this #LongCovidAwarenessDay, we are excited to announce the publication of the Spanish version of The Long Covid Diary, Diario de Síntomas de #CovidPersistente 🇪🇸

Due to the passing of my dear friend Ondine, I’ve decided to cancel my participation in the 'Confronting Injustice Through Open Science' conference. I was looking forward to speaking at the conference, but right now, taking the time to grieve with loved ones is more important 💔

We are heartbroken to share the loss of our co-founder, CEO, and beloved friend, Ondine, who passed away on Tuesday 11th March. Longcovidsos.org/post/ondine-sherwood

The #LongCovid Symptom Diary was created to support patients in tracking all aspects of their disease, and this includes keeping track of the use of medication, supplements, and treatments.

Will you join us at the 'Confronting Injustice Through Open Science' conference this Thursday? You can either join in person (free) or online! I'll be speaking about my approach to doing research on the panel 'How to place marginalized forms of knowledge production in the center'.

For years, I have worked to improve care, research, and support for people with Long Covid. Now, I am introducing a project that brings all of this work together into a practical tool: The Long Covid Symptom Diary

For years, I have worked to improve care, research, and support for people with Long Covid. Now, I am introducing a project that brings all of this work together into a practical tool: The Long Covid Symptom Diary

I’m looking forward to sharing my perspective on what needs to change and learning from others working in this space. If you’re interested in these topics, I’d love for you to join. The event is free to attend, both in person at Vrije Universiteit Amsterdam (@vuamsterdam.bsky.social) and online.

I’ve spent the past few years working on the topics of accessibility and inclusion, particularly in the context of patient-informed Long Covid studies and community-driven advocacy. 🧵

As the World Health Organization @who.int begins a third year seeking consensus for the international treaty on pandemic prevention, preparedness, and response, there is a glaring omission—recovery, write Jeremy S Rossman and Vicky van der Togt

Without addressing pandemic recovery, we risk ongoing societal harm and reduced readiness for future crises. That's why recovery must be a central part of the treaty.

A pandemic treaty that excludes recovery overlooks the essential process of addressing long-term impacts, rebuilding systems, and learning from past crises. Recovery should, therefore, be a cornerstone of the pandemic treaty. Read our latest article, published in @bmj.com 👇

Good to see that this paper has been retracted, although it's unfortunate that it took this long. In NL, @misterblok.bsky.social & I had to take legal steps (in 2021) to get the recommendation for the use of hydroxychloroquine as a treatment for #COVID-19 removed from government websites.

Here's our pitch in the Lancet (with @zalaly.bsky.social) on shifting the paradigm on infection-induced/associated NCDs. www.thelancet.com/journals/lan... "Governments must face the reality that some infections which are largely regarded as only acute cause a substantial burden of chronic illnesses"

📢 Join Long Covid SOS as the new Chair of the Board of Trustees! We're seeking a strategic leader with governance experience to guide our mission in advocating for and supporting those affected by Long Covid.

With H5N1 flu spreading across US dairy herds and at least 30 human infections linked to cattle, there's a pressing need for enhanced surveillance and containment efforts. Could this virus evolve to spread between people? Taking preventative measures now is more crucial than ever.

We met back in 2023, talked about #LongCovid and health inequalities & then we wrote this paper with a call to action. I’m particularly proud of this work because it's an example of what happens when folk collaborate rather than compete towards better science! onlinelibrary.wiley.com/doi/full/10....

'Inside the Bungled Bird Flu Response, Where Profits Collide With Public Health'

#Olympics2024 really gives us a front-row seat to witnessing the consequences of every public health issue that's been swept under the rug for too long: Uncontrolled COVID infections, dangerously high temperatures, extreme water pollution, to name a few. Go team! 🥲

'... More than four years since the pandemic hit it was another sign that old habits — and bad science — dies hard.' www.abc.net.au/news/2024-07...

Have you ever had one of those moments when all the brainstorming comes together and all the projects kind of fall into place? That's today for me 🚀

I celebrated a milestone yesterday! Announcement coming soon.. 📖

UPDATE: New developments on the H5N1 outbreak in the United States.

'Before 2020, 1 million to 3 million people suffered from POTS in the United States, researchers estimate.' 'Recent studies suggest 2 to 14 percent of people infected with the coronavirus may go on to develop #POTS.'

📢 MEDIA CALL for admins of Long Covid support groups around the world. For an investigative radio documentary (BBC) I'm looking for admins of support groups who are willing to talk about the sharing of medical and scientific info in their support groups. Interested? 👇 [email protected]

Zogeheten 'vaccine hesitancy' is één van de vele problemen waar @researchaidnet.bsky.social zich over buigt. Wij zien vaak dat mensen vragen hebben over vaccinatie, en niemand om ze aan te stellen, waardoor hun zorgen blijven bestaan en soms zelfs groeien.

'Bond roept op om leerkrachten met long covid langer in dienst te houden' Preventie? Met preventie voorkom je de ziekte zelf. Dat werkt een stuk beter om uitstroom te voorkomen.

Yesterday, I gave my first guest lecture for students of the University of Derby on my work in Applied Clinical Science. An exciting 'first' for me 🙌 It was great to talk to (and hopefully inspire!) the next generation of researchers, and I hope I get the chance to do this more often.

Years ago, when I was still with the group, I created this logo and decided on these colors as the brand identity for Long Covid Netherlands. I realized yesterday that I couldn't have picked a better color scheme as it perfectly matches the #LongCovidAwarenessDay colors 👌

On this #LongCovidAwarenessDay, I spoke on the topic of #LongCovid, patient advocacy, needed actions, and more, at the 'Health For All' conference, held in Cieszyn, Poland, organized by the 'Europe, A Patient' association. Watch the livestream here: www.facebook.com/share/v/sEhs...

After working together for almost four years, I was asked last month to formally join Long Covid SOS (@longcovidsos.bsky.social) as an Expert Advisor, and I gladly accepted.

Vraagje: heeft iemand deze C-support posters ooit in het wild gezien?

Interessante en minder interessante presentaties bij het #LongCovid C-support symposium in Den Bosch vandaag. Ik heb een hoop notities. Vanavond/morgen zal ik er een aantal delen.

Evening strolls and a tiny skyline 🌇 Have a good night everyone

It's been a huge amount of work, but I'm pretty damn proud of the resources I've developed over the last couple of months. Check out our 3 (!) new research libraries on the followings topics: 🔸️ Covid-related Immune Dysfunction 🔸️ Efficacy of Masks 🔸️ Air Filtration