Decoding "Type A" myths, Long COVID journalism, and depressing TV dramas

Welcome to the first ever edition of NURA Dispatch, the NURA Community newsletter dedicated to all things Long COVID and ME/CFS. We’ll give you the lowdown on what’s been happening at our Long COVID and ME/CFS online community, and some other interesting titbits too.

🤓 Fun fact: whilst the American spelling is tidbits, the original British English word is indeed spelled titbits, derived from the Middle English word “titte”, meaning a small piece or portion…That’s fun, right?

❗ Can you think of a better name for this newsletter? Hit us up with your suggestions.

🏡 Community corner

• It’s been a lively first month at NURA Community! We’ve seen a flurry of new member intros, and sparked engaging discussions through our polls and questions (I’ve yet to make my mind up on cauliflower pizza crust…).

• We hosted our first virtual meet and greet (keep an eye out for more) - an informal, friendly and supportive space to meet and connect with others who get it. Lots of thought-provoking conversations were had, including dealing with unsympathetic bosses, comparing yourself to others, and feeling guilt about not taking full advantage of your “past life”.

• If you haven’t been back for a while, now’s the perfect time to catch up below.

• NURA members have been sharing insights about the unexpected challenges stemming from their illness, strategies for pacing, and calming hobbies that bring purpose and joy to their lives.

• We know everyone wants different things from online communities, particularly ones for chronic illness, so we want to hear from you. Tell us what you’d value.

🏆 Top post 🏆

📚 News and resource roundup

📌 Is the nanoneedle back for ME/CFS? What’s the nanoneedle, anyway? Should you care? Healthrising has the scoop.

🕵️‍♂️ Ed Yong appreciation. A quick reminder of the exceptional Long COVID coverage by journalist Ed Yong. If you need any resources to help explain what’s going on with you to family or friends, particularly the broader context around these illnesses, these articles (no paywall, thanks to a wonderful Redditor) shouldn’t go amiss:

• Long Covid Is Being Erased—Again 

• One of Long Covid’s Worst Symptoms Is Also Its Most Misunderstood 

• Fatigue Can Shatter a Person 

In the above recent interview, Ed Yong speaks to David Tuller and discusses his insights as a journalist covering long COVID. They delve into how Yong came to grasp the seriousness of Long COVID and related topics. Definitely worth a listen.

📰 This recent article from the Financial Times, which we’ve shamelessly uploaded (but credited!), sets out the approaches to Long COVID research. Melissa Heightman, who opened one of the first specialist Long COVID clinics at University College London Hospitals in the UK, said: “We are not expecting a simple cure, a silver bullet, because we know from other complex illnesses that that’s rarely achieved,” pointing to the multiple factors behind the condition.

❓ How do you feel about research into treatments for Long COVID and ME/CFS? We had a range of responses to our question, but it does seem like members slightly lean towards optimism…

🎨 Are you a creative soul?

If you write, draw, take photos, keep journals, or literally anything else, we’d love to hear from you. We want to share our members’ creativity and stories about living with Long COVID, ME/CFS and related conditions. Reach out by replying to this email.

✂️ Sparkling Snippet

💡 Unravelling the “Type A” myth

Have you ever been asked about having a "Type A" personality as a possible cause for your Long COVID or ME/CFS? This seems to be a common experience among those of us with chronic, post-viral illnesses. The notion of “Type A” traces back to the 1960s, when two American cardiologists introduced the term. The research they conducted suggested that having a "Type A" personality - being competitive, ambitious and high-achieving (though the definition itself of Type A behaviour was far from clear) - could lead to coronary heart disease.

Turns out, this research was strategically funded by the tobacco industry who aimed to muddy the waters and cast doubt on the link between smoking and heart disease. Spoiler: The research was later debunked and never replicated successfully. It’s almost like you can’t trust a tobacco-funded study to accurately diagnose heart health. Who knew?

Current evidence suggests that while psychosocial factors may influence heart disease incidence, their effect size is smaller compared to traditional risk factors like cholesterol and hypertension - and in any case, the data is not solid.

Dr. Eugene Braunwald from Harvard University said he ”was not very impressed with firm evidence for stress-related progression of coronary disease.” The American Heart Association said: “Stress management is an appealing concept and makes sense for a person’s overall health. However, the available data do not yet support specific recommendations for its use as a proven therapy for cardiovascular disease.”

Read the full, fascinating article here.

📸 Spotlight Snapshot

Big shout out to Ryan, who shared this adorable selfie of himself and his dog! Keep the photos coming in our Daily and weekly wins space. Remember, any moment that brings you joy is worth celebrating.

📺 Television

Curious about what community members are watching? Answers to the above included Gossip Girl, Gray’s Anatomy, 90 Day Fiancé, and, er, “cigarette YouTube”? Chime in here.

If you feel like something more hard-hitting, new British drama Breathtaking on ITV has solid reviews, though bear in mind it’s “deeply sad and often triggering”. It’s based on the moving COVID memoir by Dr Rachel Clarke, who worked on acute wards during the pandemic. The Independent has a write-up. 

Dr Rachel Clarke has spoken harrowingly about the traumatic experiences faced by herself and her colleagues during the pandemic. She has continued to criticise the UK Government’s failure to protect NHS staff: “We don’t even have proper PPE now…if I go to see a COVID patient, I still don’t get a proper FFP3 protective mask, I get a flimsy paper mask. That is staggering. The evidence shows the good FFP3 masks stop you catching covid.”

On that cheery note, Breathtaking isn’t directly accessible in the US, but you could use a VPN, or something?

Have you watched it? What did you think? Let us know by replying directly to this email.

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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