#61: Overnight brain rinse

Hello Long Hauler fam,

☀️ Here are 2 research findings, 1 thought, and 1 question to consider this week (plus 🐶 pic)

2 IDEAS FROM RESEARCH

I.

An old drug seems to help some of us.

Rapamycin is an old, well-mapped medicine - normally used after transplants - and it’s been tested in ME/CFS in low doses.

The study found it helped some people by calming inflammation in the brain’s immune cells, and helping the mitochondria work better.

(they took microglia -brain immune cells- grown in a dish, bathed them in patients' blood plasma, and watched what the plasma did. Delightful!)

Of 65 who finished, 26 were classed as responders, 31 as partial responders, and 5 as non-responders.

Interestingly, it was over 2x as likely to help people whose illness began after an infection (including COVID) - a hint that who responds might be predictable.

Big catch though - Everyone knew they were taking the drug, with no placebo group alongside- hope alone can nudge fatigue scores. This needs a proper blinded trial, which the research team is keen to do.

There was a previous (Phase 1) trial of the drug that caused a lot of side effects (many people dropped out)- this time around they seem to have fixed a lot of these issues with a better specific formulation.

For the nerds: the proposed mechanism is chronic mTOR activation, which has been described in a subset of ME/CFS patients

Source: Journal of Translational Medicine (Gile et al) - https://link.springer.com/article/10.1186/s12967-026-08575-3

II.

Brain fog as rinse cycle

A team at Griffith University in Australia scanned the brain’s overnight rinse cycle - the system that clears out waste while we sleep. In ME/CFS, it looked sluggish. And the more sluggish it was, the worse people’s sleep and focus.

For a symptom waved away for decades as “in your head”, seeing it on a scan is satisfying. This is apparently the first study to demonstrate impaired glymphatic function in ME/CFS using MRI.

Caveat: it was a small study, and the gap between patients and healthy volunteers was modest - not everyone’s convinced it’s meaningful yet. Definitely needs a bigger group to confirm.

Still, if it holds, it puts sleep and the brain’s clean-up on the list of things worth measuring, and treating.

Source: Griffith News, published in Frontiers in Neuroscience - https://news.griffith.edu.au/2026/07/03/brains-waste-clearing-ability-impaired-in-me-cfs-patients/

1 THOUGHT

Like many of us I often try different things and have to try and stay quite tuned into my body. Something I’ve been thinking about:

Avoiding getting too cold seems to really help me. It’s currently winter in New Zealand and this year I’ve made an extra effort to stock up. My new favourite is a nice neck warmer that can easily be pulled up to cover my mouth. I know many people who are long haulers suffer from persistent coughs. For me this is made much worse by cold and I’ve found covering my mouth seems to help a lot (means you breathe in warmer air. Bonus when it’s a cute fluffy merino wool fabric!

Of course, getting too hot is also a big problem! It’s a balance….

1 QUESTION FOR YOU

Is body temperature regulation something that you struggle with? Any favourite ways of managing it?

puppy p.s. Important gardening work

[alt text: Whisky the cream coloured poodle and Monty the black Labrador chew sticks together on the grass as my mum nearby sticks some bean stakes in the garden.]

Wishing you a peaceful week,

Tom and Whisky

☺️

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