Chronic illness hacks, furry friends and "are you feeling better yet?"

Happy Wednesday from NURA Dispatch, where we talk about all things Long COVID and ME/CFS. It’s been a little while, but we just wanted to drop in and say a mid-week hello.

❓👋 For new joiners, this is our community newsletter dedicated to our online network of wonderful friends across the world.

👋😊 If you haven’t visited NURA Community recently, we’d love to see you there - there’s always something going on. And, just a reminder that if you are indeed new to our community, you can watch our welcome video here which walks you through how to find your way around.

🎉💻 Have you signed to our next Zoom hangout, on Friday 27th September? You can join here. These are really friendly, relaxed social sessions where you can meet others in similar situations and talk about anything that’s on your mind.

🏡 Community round-up

❓ How do you respond when people ask “are you feeling better now?”. Does the question frustrate you? Do you always reply in the same way?

🎤 Sign up for our talk on October 3rd by Jenni, disabled model and content creator, on chronic illness hacks and disability aids.

🍽️ For anyone who missed our talk by Chef Taryn Marquez, you can now watch the recording. Taryn shares a number of useful tips on feeding yourself well with Long COVID and ME/CFS.

👋 Say hello to new member Ash, and Sophie the cat!

😴 How do you improve your deep sleep levels? Write a response to this question from a member.

🤒 Do you have any tips on dealing with COVID re-infection? Add to our thread! So far, members have cited:

 💊 Paxlovid

 💊 Metformin

 💊 Antihistamines

 😴 Resting aggressively

🎊 Our “little wins” from NURA members this week have featured saying no to plans to prioritise rest, using a mobility aid to get out in nature, creating a medical binder, and reading books in bed. Did anything make you smile this past week? Did anything make you feel proud?

💚 How you can help keep NURA Community going

One of the best things about NURA is the sense of community, belonging, and friendship it offers. Dealing with a chronic illness like Long COVID or ME/CFS can feel incredibly isolating - we understand this first-hand. But forming genuine connections, and sharing the highs as well as the lows, can make our experiences just a little bit easier.

🤲 NURA is run by a small team of dedicated volunteers who rely on the support of members, and those impacted by the COVID crisis, to keep this community running. If NURA Community has brought you some comfort or support, or if you believe in our mission, please consider making a contribution. Something as little as $2 a month goes a long way.

💡 Did you know?

Did you know about all the things you can do inside NURA Community?

📍🌍 Find members near you. Just click on "members" in the left sidebar, then select "members near you" to see who's local.

📌 Bookmark posts you want to keep track of. Just click on the three dots at the top right of a post, and click "bookmark post."

🏆📊 See your name pop up on our Leaderboard! Shout out to members Lydia, Michelle, Laura and Cat, who are amongst our top members right now. We love to see members interacting meaningfully with others, whether that’s through supporting people with a comment or a cheer, or posting useful information.

🔍 Search. Type key words or phrases into the search bar in each space to find content on specific topics i.e. "research", "brain fog", "mental health" or anything else.

📊 Ask other members a question. Just click on "+" in the app or "create” in your web browser, then select the "poll" option. You can ask multiple choice questions, percentage questions, or use a hot-cold indicator. This is a great way to engage with other members.

📰 News, research, etc

🧒 Long COVID symptoms look different in kids. “With so many outstanding questions about how many kids and which ones develop Long COVID, it’s important for clinicians to know the symptoms to look for, Gross says. There’s a “misperception” that “if children have Long COVID, it will look like Long COVID in adults,” she says. But that’s not necessarily true.”

🛣️😕 The long, long road of Long COVID. This comic strip from Daniela Gilsanz - see one of the panels below - highlights her experience of Long COVID. Relatable for many.

⌚ Changes in wearable sensor data in people with Long COVID. “Our study provides objective evidence for a pathophysiological response among participants with Long COVID that has been described in other studies.”

❓ Question of the Week

🐾 We know many NURA members find a lot of comfort in their pets - whether it’s a loyal dog, a mischievous cat, or even a calming aquarium. Our furry (or scaly, or squishy!) companions have a way of lifting our spirits, offering us love and companionship, especially on tough days.

This week, we’d love to see photos of your pets or hear about the joy they bring you. Feel free to share in the comments on our dedicated pet thread - let’s celebrate the little friends who help us through.

🛠️ Some helpful things

From us:

From others:

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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