ME/CFS research insights, brain fog breakthrough and virtual meetups galore

Good morning, happy Wednesday, and welcome again to NURA Dispatch. We’re the NURA Community newsletter dedicated to all things long COVID and ME/CFS.

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

🧠 Do you struggle with brain fog as part of your long COVID or ME/CFS?

We asked NURA members this. 93% said yes.

So what causes brain fog? New research by Trinity College Dublin scientists, published last week, found that a leaky blood-brain barrier could be the cause of brain fog in long COVID patients. Er, are our brains leaking?

The blood-brain barrier controls which substances or materials enter and exit the brain. “It’s all about regulating a balance of material in blood compared to brain,” said Professor Matthew Campbell, co-author of the research.

“If that is off balance then it can drive changes in neural function and if this happens in brain regions that allow for memory consolidation/storage then it can wreak havoc.”

In the research, it was discovered, among other things, that long COVID patients who reported having brain fog did indeed show signs of a leaky blood-brain barrier. Participants without this symptom, and participants who had recovered from COVID, did not.

Matthew Campbell added that it was possible that people with a tighter blood-brain barrier might be better protected from brain fog, should they develop long COVID. This may explain why brain fog does not arise in all long COVID patients.

🏡 Community corner

• Do you have any more advice for this NURA member looking to get help with POTS?

• Join our next virtual meet tomorrow (Thursday 7th March) at 7PM (if you’re in the UK). If you’re elsewhere, it’ll hopefully be doable for you, too (unless you’re in Western Australia - sorry!). If there’s ever an issue with times, just let us know by replying to this email.

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

• NURA members have been sharing their experiences on the difficulties on pushing through while working with long COVID or ME/CFS, pronouncing “encephalomyelitis” and small daily habits that bring joy.

• 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.

📰 The NIH ME/CFS study

🧪 The long-awaited ME/CFS research study by NIH, which started eight years ago, published its results last week. The study represents the deepest dive yet into the illness, a “megaworkup” of 17 people with post-infectious ME/CFS who had been sick for less than five years, and 21 healthy controls. Researchers found differences in the brains and immune systems of people with post-infectious ME/CFS. They also found distinct differences between men and women with the disease.

Sounds great, right?! Yes…and no. Not to be a buzzkill, but patients, scientists and advocates have raised serious concerns about the research, which cost more than $8m 💰💰💰. We’ve broken it down below.

😊👍 The good:

• The study has brought much-needed visibility to ME/CFS by garnering the attention of mainstream media.

• The paper stands out for its interdisciplinary collaboration; by bringing together experts from diverse fields, the study has revealed a more complete picture than previously fragmented pieces of the ME/CFS puzzle, and provided a more comprehensive understanding.

• The research leaves no doubt: ME/CFS is a disease with clear biological hallmarks. The findings confirm that “it’s biological, not psychological,” said Dr. Avindra Nath, the chief of infections of the nervous system at the National Institute of Neurological Disorders and Stroke, who led the study.

😔👎 The bad:

• The study was small, and may not reflect the experience of many people with ME/CFS, particularly those whose illness onset was not post-infectious.

• More moderately and severely affected patients were not included; the study participants had to be functional enough to undergo intense evaluation during days of visits to the NIH.

• The study did not find some of the well-established medical signatures of ME/CFS that have been documented by other research.

• Strange, misleading language was used, such as “effort preference”. This is a term used in psychology which means “willingness to exert”. It goes without saying that people with ME/CFS are cautious about overexertion (due to post-exertional malaise) and have lower effort preference than healthy controls, so the decision to include it and make it so central to the paper seems odd, given it is not measured in most neurological diseases.

• The study doesn’t answer the single most important question: what is actually causing ME/CFS, and how can it be treated?
  

Read ME Action’s analysis of the study here.

🐦 Top Tweet

💡 Why patient involvement in research actually matters

In light of the NIH research study outlined above, it’s worth revisiting this NY Times article on what it means to listen to patients in biomedical research, in the context of post-viral illness. Though, as science writer Julie Rehmeyer pointed out, it’s not about involving patients merely for the sake of kindness or inclusion; it’s about really capitalising on the wealth of expertise - genuine, substantive, scientifically-informed expertise - that patients have about their illnesses.

Patients are often meticulous record-keepers, and delve into their medical journeys with impressive precision, perseverance and creativity (see this wonderfully illustrated essay from a COVID long hauler here). Often left to navigate our illnesses alone, particularly with conditions like ME/CFS and long COVID with their myriad uncertainties, we engage in self-experimentation, sharing our findings and formulating our own hypotheses and approaches. But perhaps the most remarkable attribute of patients is their adeptness at networking; they will often find themselves connecting and speaking to fellow sufferers by the thousands. This is the kind of knowledge that researchers often just don’t - and perhaps can’t - have. It’s no surprise then, that better engagement with patients → better research.

🚨 See here for details on how to participate in Yale’s LISTEN study on long COVID.

👋 New intros

Say hi to new NURA members here.

🔦 Member Spotlight

✍️🕸️ This creative writing piece by community member Lydia cleverly compares chronic illness to a spider. Lydia shares her journey with her own spider, born from a viral infection, and the unique webs it spins.

📖 Want to share your story?

If you're creative in any way - whether you write, draw, take photos, keep journals, or pursue any other form of self-expression - we want to hear from you. Share your unique perspective about living with long COVID or ME/CFS. Reach out by replying to this email.

🎨✍️📸🎭🎼🖌️🎬🎻

🛠️ And finally, 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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