Love and Long COVID, vagus nerve fun and Easter polls

Happy Friday from NURA Dispatch! Welcome to the NURA Community newsletter dedicated to all things long COVID and ME/CFS, and the endlessly wonderful, knowledgeable, supportive global patient community.

🐣 It’s firmly spring, and almost Easter. Do the changing seasons impact your symptoms? Answer this community poll by NURA member Joe and share when you typically feel worst.

💡 Did you know?

Did you know there are more things you can do in NURA Community?

🔍 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.

📊 Do a poll or ask a question. Just click on "+" in the app or "create” in your web browser, then select the "poll" option. This is a great way to engage with other members.

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

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

💬 Contribute. Check out daily opportunities to engage, or simply click the "+" or “create” button to share your thoughts, questions, photos or resources.

🏅 Earn badges for engagement. Shout out to member Lydia, who’s winning the badge race with 5 badges earned so far. Badges you can earn include Supportive Star, Top Poster, Resource Hero, Poll Pro…and many more.

🏡 Community corner

• 🎗️ Long COVID Awareness Day was last week on March 15th. For many people, this month marks four years of living with long COVID and all that comes with it: the life-altering symptoms, the ceaseless string of medical appointments and new symptoms (or old ones you thought had disappeared for good) and their accompanying frustrations, the weight of the sadness and the loss, the learning to live with it and the learning to be grateful still, the never-ending process of adaptation, and the alienating feeling of living in a world that seems to have largely moved on.

• ✍️ We’d be remiss not to mention the many creative and moving stories and articles submitted by NURA members and posted in the community.

• ❤️ Read Joe’s account of love and dating with long COVID, and Meredith’s poignant spoken word piece on the impact of chronic, life-altering illness on motherhood.

• 🖥️ Join our next virtual meet this Sunday 24th March at 7PM - if you’re in the UK. That’s midday Pacific Time and 3PM Eastern Time for members in the US.

• 🧘‍♂️ Do you ever feel like your brain's doing a marathon and needs a pit stop? Chronic illnesses like long COVID and ME/CFS bring their own unique circus of worries and stresses. Join our 30-minute evening meditation session on April 2nd, on the themes of self-compassion and acceptance. Even if you’ve never meditated before, or feel like rolling your eyes at the very thought, you never know if you might find it calming.

• 🎥 Are you new to the community? Watch our welcome video which walks you through how to find your way around.

📰 Articles, research, miscellany

👨‍⚕️ The personal journey of a critical care doctor with long COVID. “Recovery is a moving target while taking four steps forward and three backward. One doctor told me it would take me six months to recover, and another said I could possibly live like this for life. Once I reframed my expectations, I noticed improvements, even if it was at a snail’s pace.”

👨‍💼 George Mondiot’s article in the Guardian calling out the persistence of outdated beliefs and practices, with regard to ME/CFS, in some quarters of the medical community, particularly in the UK where the biopsychosocial model of the disease originated.

🩸 Another article on the search for blood biomarkers which will hopefully eventually lead to treatments. Cardiff University immunologist Paul Morgan and colleagues have pinpointed, in the early stages of their research, an immune system anomaly in the blood of some long COVID patients. Their work is one in a surge of studies searching for long COVID clues in the blood for patients. “It’s as if there’s a picture that’s being revealed from the fog,” says Akiko Iwasaki, an immunologist and Howard Hughes Medical Institute investigator at Yale University. 

🔬 The difficulty is that long COVID is very likely not just one disease, but a collection of many diseases, Iwasaki says, with varying sets of symptoms and triggers. “We are not likely to come up with one biomarker or even one set of biomarkers to distinguish everyone with long COVID.”

The challenges of trying to identify and untangle long COVID’s suspected mechanisms have been much deliberated. What’s a cause and what’s a downstream effect? “Trying to separate these causes from the multifarious effects of the virus itself is a real scientific challenge. Researchers who have summarized the growing literature on long COVID are not shy about listing the many, many limitations of the studies out there, chief among them the frequent lack of a control group.”

🐦 Top Tweet

⚡️ The wandering nerve

Have you ever wondered about the vagus nerve, its role in long COVID (and ME/CFS) and its implications for potential treatments? Many studies have highlighted the neurological aspects of long COVID, including some that are potentially related to damage to the vagus nerve, the body’s primary “communication superhighway” which regulates critical body functions (heart rate, digestion etc) and extends into every major organ in the body, including the heart, lungs, and gastrointestinal tract. There is growing interest in using vagus nerve stimulation as a treatment approach. This essay from the ever thoughtful Rachel Katz of the Inner Workings newsletter, recounting her discovery of vagus nerve exercises and subsequent exploration into their potential health benefits, might be of interest.

Whilst vagus nerve stimulation devices can be costly and unattainable for most, activities said to stimulate it include breathing exercises, meditation, cold water immersion, various physical manoeuvres and - don’t hate me(!) - yoga. Of course, these, as well as the actual electric stimulation devices, are unlikely to be cures, or even offer total relief from symptoms.

“There is no trial of any drug or anything I’ve ever done in all my years that makes a patient so well that he or she no longer fulfills criteria for chronic fatigue syndrome,” Benjamin Natelson said, a neurologist at Mount Sinai, who has run several clinical studies on vagus nerve stimulation for various health conditions.

But “at this point, almost any sort of management or treatment option that could feasibly help a number of people is a game changer", Mayo Clinic internist Stephanie Grach says.

Have you tried any vagus nerve stimulation activities? Unlike elusive “brain retraining” programs which blend CBT techniques with straight up denialism, alongside “nervous system reset” exercises (depending on the specific program) that may help some people(?) address the mental health impacts of illness, the theory behind vagus nerve stimulation is rooted in science and evidence regarding the vagus nerve’s influence on various bodily functions like inflammation regulation, immune response and digestion.

🛠️ Some helpful things

From us:

From others:

That’s it for now! Until next time.

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