Vicky van der Togt

ALT text for cover image: An image that says 'frontiers ORIGINAL RESEARCH article Front. Public Health, 06 November 2025 Sec. Public Health Education and Promotion Volume 13 2025 https:/.b/./g/0 Co-creating a social science research agenda for Long Covid. Oonagh Cousins, Maaret Jokela-Pansini, Ella Barnard, Jo Dainow, Nisreen Alwan, Mark A Faghy, Caroline Dalton, Eileen Gilmour, Gail Davies, Ondine Sherwood, lan Patel, Lotus Westerhof, Beth Greenhough. There is a Long Covid SOS logo at the bottom of the image.

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. 🧵

DDx Publishing - The Long Covid Symptom Diary > Click for all languages The Long Covid Symptom Diary DDx Publishing is delighted to present the Long Covid Symptom Diary, a disease tracking notebook to help patients track all aspects of their dise...

With this newest edition, the diary is now available in English, Dutch, Spanish, German, and French!

You can order your copy here: ddxpublishing.com/the-long-cov...

An image showing the cover of Journal de bord des Symptômes du Covid Long in the center, with examples of the symptom tracking pages in French on either side. On the top of the image are 2 circles, one with the DDx Publishing logo and one with the Long Covid Belgium logo. At the there are multiple hands in blue and green visible, of which one is holding a Belgian flag.

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.

YouTube video by Gez Medinger Why Old School is Best | The Long Covid Symptom Diary

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?...

Ondine Sherwood obituary Other lives: Founder of a group campaigning for the recognition of Long Covid

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

Love to see all the accessibility aspects incorporated into the event! Well done 👏

Why we need a pandemic treaty now The consequences of failing to strike a deal extend well beyond how the world will grapple with health emergencies

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.

🧵

A screenshot of a message om the Leiden University website which states: Researchers advised not to respond to US questionnaire 19 March 2025 Researchers who have received a questionnaire containing political questions from the United States Geological Survey (USGS) or other American government funders such as NIH or ARPA are advised not to respond. An email with 36 intrusive questions has been received by researchers from organisations including Wageningen University & Research (WUR). Various media have reported on this recently.

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..

👀

I'm incredibly grateful for the opportunity to speak on these topics, and look forward to being able to do this more in the future, and hopefully, work towards a situation where ethical and effective PPI becomes the standard in research.

I spoke about what meaningful inclusion looks like to me, how accessibility can be embedded in every stage of the research process, and how centering patient and community voices can lead to better research.

I shared part of my journey over the years, from navigating Long Covid as a patient, to national and international advocacy, to building community-informed research initiatives.

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.

I was fortunate enough to recover after 2 years of struggling with the disease, but most are not so lucky. Just like in 2020, patients around the world are still fighting for recognition, research, and rehabilitation.

Please, support your local or national Long Covid association 🙏

A photo of a close up of my upper body, showing a Long Covid Awareness pin pinned to my (faux) leather jacket. The pin reads 'Long covid sos'

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.

DDx Publishing - The Long Covid Symptom Diary >> Scroll down for other languages The Long Covid Symptom Diary DDx Publishing is delighted to present the Long Covid Symptom Diary, a disease tracking notebook to help patients track all aspects of t...

🫴 De cada edición en Español vendida del diario, 1€ será donado a asociaciones en apoyo a las comunidades hispanoparlantes.

La versión española de Diario de Síntomas de Covid Persistente, ya está disponible en Amazon, en todas las regiones del mundo.

Consigue el tuyo ahora 👇

Como ya mencionamos, el Diario de Síntomas de Covid Persistente está creado por y para pacientes, y esto incluye las traducciones del libro.

Me complace haber trabajado con Elizabeth Semper (ACPE), paciente de Covid Persistente y activista desde 2020, para crear esta versión en español del diario.

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

Diario de Síntomas de #CovidPersistente 🇪🇸

DDx Publishing - The Long Covid Symptom Diary >> Scroll down for other languages The Long Covid Symptom Diary DDx Publishing is delighted to present the Long Covid Symptom Diary, a disease tracking notebook to help patients track all aspects of t...

The Spanish version of the diary, Diario de Síntomas de Covid Persistente, is now available in all Amazon territories worldwide.

Get yours now: ddxpublishing.com/the-long-cov...

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

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.

An image of a hand holding the Spanish version of the book, against a beige background. The title of the book reads 'Diario de Síntomas de Covid Persistente'

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

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.

She was a true powerhouse of a woman, with a heart of gold, and a mind as sharp as they come.

The Long Covid community lost a true champion.. 💔

My heart is with all her friends, family, the @longcovidsos.bsky.social team, and all who knew and loved here.

Ondine Sherwood was one the co-founders of Long Covid SOS, and a close partner and friend of mine.

The world lost one of the most beautiful, loving, inspiring, and impactful people I ever had the pleasure of meeting.

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 💔

A black background with centered white text. The heading reads, “In Honour of Ondine Sherwood.” The message states that Long Covid SOS is heartbroken to share the loss of their co-founder, CEO, and beloved friend, Ondine, who passed away on Tuesday, 11th March. It expresses love and condolences to her family. A small horizontal line is placed at the bottom.

A black background with centered white text. The message describes Ondine as the driving force and heartbeat of the Long Covid SOS team, a dear friend, and a profound loss to the community. It expresses devastation at her passing but also a commitment to continuing her legacy. The final line states, “We will miss her every day.” A small horizontal line is placed at the bottom.

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

DDx Publishing - The Long Covid Symptom Diary >> Scroll down for other languages The Long Covid Symptom Diary DDx Publishing is delighted to present the Long Covid Symptom Diary, a disease tracking notebook to help patients track all aspects of t...

Are you looking for a tool to better keep track of different aspects of your disease?

You can order the Long Covid Symptom Diary here:

Having this data in a clear overview can help patients get more clarity on what works, what doesn’t, and how different treatments interact.

It also provides a valuable record to share with doctors, which can lead to better care decisions.