#49: Hello Immunome!

Hello Long Hauler fam,

My sincere apologies, I've been painfully busy the last couple of months, but now I'm back to normality.

To help you forgive my sins, I've included extra research findings as well as a special announcement from a reader! And of course the pooch pic!

☀️ Here are 5 research findings, 1 thought, and 1 question to consider this week (plus 🐶 pic)

5 IDEAS FROM RESEARCH

I.

This excellent blog article by HealthRising breaks down an exciting new update in immune science in general: using AI, researchers decoded complex patterns in immune cells (T and B cells) and could often tell who had autoimmune diseases, diabetes, or even a recent flu jab. As the blog says:

• When applied to a single disease, the authors stated these techniques can pluck out subsets and track treatment effectiveness.

• That’s where diseases like ME/CFS and long COVID come in. [Expert] Eric Topol said that this technique was perfect for deciphering mysterious, heterogeneous, immune-based diseases like ME/CFS, long COVID and post-treatment Lyme syndrome.

So this is the “immunome”- a way to easily track all immune activity. The researchers say it's moving fast and could become affordable. Let’s see what it enables!!

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​II.

A Nature study revealed some interesting brain chemical imbalances in ME/CFS—and how they change after exercise.

No surprise, exercise made things worse for the ME/CFS group –their levels of many chemicals dropped, while healthy people’s levels rose.

This could help explain why rest doesn’t help after exertion in ME/CFS.

One key takeaway: the way the brain processes energy in ME/CFS looks different from healthy people—and different from earlier studies showing a “low-energy” state in the blood. The brain might be running hot in some ways and cold in others.

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III.

Blood-based tests for ME/CFS may be getting closer to reality

There’s still no simple blood test for diagnosing ME/CFS — but this new review pulls together promising research that might change that:

• abnormal mitochondrial function, including issues with producing ATP (the cell’s main energy source), showed up in several studies. one approach using three different markers hit almost 100% accuracy — though it’s still early days.

• metabolomic profiling (which maps chemical fingerprints in the blood) has reached diagnostic accuracy as high as 98% in some machine learning models.

• raman spectroscopy, a quick laser-based method, showed it could sort people with mild, moderate, and severe ME/CFS using just a small blood sample.

the big challenge now is proving these tests are specific to ME/CFS and not just picking up on general fatigue or inflammation seen in other illnesses. but researchers are hopeful — especially as better diagnostics could mean earlier treatment and less misdiagnosis.

for long haulers, this review hopefully indicates that objective testing might not be that far off. the science is moving in the right direction!

IV.

a new(ish) theory says long covid and ME/CFS might come from a ‘traffic light’ in your cells getting ‘stuck on green’.

the traffic light is called mTORC1, and it helps control how your cells use energy, grow, and recover.

normally, it switches on and off to keep things balanced.
but if it’s stuck “on” all the time, your cells can’t rest or repair properly.
that could explain why people feel exhausted, foggy, and never seem to bounce back after doing even small things.

this idea ties together a lot of what we already know—like problems with energy, the immune system, and even reactivated viruses.

and here’s the exciting part:
if this “stuck traffic light” theory is right, there are already drugs that might help reset it.

still early days, but it gives researchers a clearer target—and that’s a big deal.

source: mTORC1 syndrome (TorS): unifying paradigm for PASC, ME/CFS and PAIS

V.

another possible reason your body can’t switch off after a virus? trained immunity.

a separate mini-review raised a fascinating (possibly related?) angle: ‘trained immunity’.

it’s not the usual kind of immune memory with antibodies. trained immunity is when your innate immune system—the part that reacts first—stays on high alert, even after the infection is gone.

some early research in long covid and ME/CFS suggests this could be part of the problem. instead of healing, the body keeps sounding the alarm.

it’s still a working theory, but it fits with what many people experience: feeling like they’re always running on empty, even after doing almost nothing.

Special announcement ❤️

A Sunbeam reader, Sara, got in touch with me about a beautiful book that she has published recently. Read on…

Announcing the release of Long Covid Transformed My Mommy a new children’s book written by Sara Robitaille, a mom living with disabling long covid.

I am a person living with disabling long covid and wrote this book over the last 2 years little by little. For the millions of parents all over the world who have been physically and mentally changed by disabling long covid, their love for their children remains unchanged. In playful descriptions and whimsical illustrations this book helps children understand what their parent with long covid is experiencing. It also lets children and parents know they are not alone during this difficult time for their family.
All my profit from the sale of the first printing will be donated to Bateman Horne Center, a non-profit working to educate, treat and research treatments for people living with long covid and other post viral illnesses. Please share and help me get the word out about this new resource!”

Sara shared with me:

“If I find an audience for this one I have already started on a version about being a kid with a long covid that I hope to publish next. There are so few books available for kids on long covid that I think these can help children and families feel validated, seen and understood and help other readers better understand that long covid is real and worthy of attention, research and community support.”

A pic from the book

Keen to buy the book? Purchase here! (all profits go to Bateman Horne Centre)

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1 QUESTION FOR YOU

What is your long hauler spirit animal version of yourself? What would the caption be?

Last time’s question: What are some digital apps that make your life easier?

Thanks dear readers for your responses below…

Jo:

I’m loving using the self care app - Finch-

And I find the Bearable app really good for tracking symptoms, impact of medication and other factors like what I am eating, how much sleep etc

Andrew:

Simple meditation timer that I use to take a 5min break several times a day:

Apple Shortcut that quickly plays relaxing music on Spotify - I like having it on my home screen so I can get it quickly when I’m stressed:

This is an app for gut hypnotherapy. I’m a sciencey person and always thought hypnotherapy was a bit out there, but the evidence has really started stacking up. For people with IBS, this app is as effective as following the full FODMAP diet. I don’t technically have IBS, but I find when I’m stressed (a lot of the time with long covid!) that I get tense in my stomach and it affects my bowel habits, and I find this app incredibly helpful. It’s not cheap AU$200, so more like the cost of seeing a specialist doctor. I’ve found it good enough that I still recommend it to anyone with any gastrointestinal symptoms who has the budget

Jobi:

I use Insight Timer to search for guided meditations, Visible app to track symptoms, and Find What Feels Good which has a lot of yoga but most importantly makes searching for restorative, brief, and low-to-the-ground guided sessions

puppy p.s. Beach time - Whisky’s happy place!

Wishing you a peaceful week,

Tom and Whisky

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