Long COVID and autoimmunity, creative writing, and enjoying your problems

🎉 Weekend greetings from NURA Dispatch, NURA Community’s fortnightly(ish) newsletter. We hope it’s a restful weekend so far.

👩 If you missed our Guest Speaker event with Pippa Stacey a few weeks back, you can watch the livestream recording here. Pippa covered a range of topics, including compassionate goal-setting, how to strengthen relationships, and building a joyful life despite the limitations of an energy-limiting condition. The audience Q&A expanded on these themes; it’s definitely worth a watch. Thanks again to Pippa and all who attended for a wonderfully engaging event.

📚 You can buy Pippa’s new book How to Do Life with a Chronic Illness here.

🔬 Guest Speaker Event: Long COVID, ME/CFS and Autoimmunity

Are you curious about the role of autoimmunity in Long COVID and ME/CFS? What does the latest research say?

Sign up here to our next Guest Speaker event on Saturday 18th May at 10:00AM BST (apologies to our US members, and those who need their morning lie-in!). Patrick Ussher will be speaking about the research of Professor Carmen Scheibenbogen, Prof. Klaus Wirth and colleagues from Charite University, Berlin. Plenty of time for Q&A at the end!

Patrick Ussher has been an ME/CFS patient for six years, and has authored a book on excessive thirst in ME/CFS, Long COVID, and POTS. He challenges the historical misdiagnosis of this symptom and offers free downloads of his work. He is currently working with two medical academics on writing hypotheses papers about thirst, as well as with The Long Covid Support Trust to create patient surveys about this symptom. He has also written various blogs for HealthRising.

🌟 Member Spotlight

👩‍ Read our latest member interview with Kate, who talked, amongst other things, about parenting with Long COVID and learning to live in the present.

🏡 Community corner

🖥️ As always, it’s been another busy few weeks at NURA. Our last Zoom Hangout welcomed many new members. The next is on Thursday 2nd May at 7PM BST. Sign up here. These are casual social sessions that offer a space to connect with others who truly understand, and share your experiences, struggles, and good moments.

👋 Welcome new NURA member Amalie.

✒️ Are you interested in joining a book club or creative writing group, together with other NURA members living with Long COVID or ME/CFS? If so, check out this post and write a comment to register your interest. Don't hesitate to join, even if you’ve never explored creative writing before!

❓ Question of the Week: Did you have any misunderstandings or misconceptions about your condition when you were first diagnosed? Join the conversation.

🌡️ Research, news, etc.

👩‍🔬 Long COVID researcher Akiko Iwasaki has been listed on Time’s “The 100 Most Influential People of 2024”. Iwasaki is a Yale University professor and leading immunologist who investigates Long COVID's mechanisms, focusing on innate immunity. Her work validates patient experiences and informs treatment strategies. Read more below.

In the video below, Iwasaki talks about the four different hypotheses her research is pursuing on the origins of Long COVID: 1) persistent viral replication causing chronic inflammation; 2) autoimmunity i.e. T-cells and B-cells recognising host antigens as something to attack; 3) reactivation of dormant viruses i.e. herpes viruses; and 4) changing tissue inflammation status resulting from acute COVID-19.

📊 About 2m people have Long COVID in England and Scotland. "If five years ago, we were to imagine that a completely new disease, which for some can cause medium- to long-term, and potentially disabling symptoms in approximately 3% of the population, which is what the new figures suggest, we would be enormously concerned.”

🌡️ Monoclonal antibodies, synthetic proteins designed to neutralise the virus, have shown promise in treating Long COVID. "The explanation goes that, if remnants of SARS-Cov-2 really are clinging to the intestinal tract and other corners of patients’ bodies, then an infusion of monoclonal antibodies could finally flush out the virus.”

📺🍿 What to watch

🎬 “A wildly imaginative exploration of what movement means to someone without it”. In the below short film, Orgesticulanismus, recommended by a NURA member, Belgian animator Mathieu Labaye honours his late father, Benoît Labaye, who had limited mobility due to multiple sclerosis. The film begins with Benoît's reflections on movement and freedom, accompanied by photos of his life. It then bursts into animated sequences, depicting the human form in a surreal journey. Through Benoît's wisdom and Mathieu's imaginative visuals, the film celebrates the brain's adaptability and the potential for freedom even in physical limitations.

👨‍💼 David Tuller, journalist and public health lecturer, speaks to George Monbiot, who wrote a column in The Guardian earlier this year about the historical mistreatment of ME/CFS.

📝 Dear Scientist…

📚👀 What to read

😕 Can you enjoy your problems? This article suggests that instead of merely accepting our problems, we should strive to find joy in them, which is akin to enlightenment. The author shares personal experiences and insights from her work as a therapist to emphasise the importance of embracing life's challenges. Practical tips on how to do this: don’t judge yourself, tell your story, make something, cry for help, redefine happiness. 

Whilst this could seem trite or thoughtless, particularly in the context of life-altering illnesses like ME/CFS, is there something here worth remembering?

🛠️ Some helpful things…

That’s it for now! Until next time.

❓ If you have any thoughts, comments or questions on anything in this newsletter, just reply directly to this email. We’d love to hear from you.

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