ME Ireland: Online Talk and Q&A with Dr Hanne Thurmer

Don't think this has been posted here yet?

Hanne Thürmer is a Norwegian cardiologist and one of the researchers of the RituxME-trial. Haven't seen the talk yet, but she's very knowledgeable about ME and sympathetic, so this should be good!

https://www.youtube.com/watch?v=hfF1uQxlgKY

 

I've listened to it now.

The title for dr. Thürmer's talk was: ME/CFS/SEID a Norwegian perspective

She spoke about her background and gave some basic facts on different names and criteria for ME. That ME and fatigue are different. The IOM report. General (lack of) knowledge about ME among health care personell. The four grades of ME, research and treatment approaches.

She went through what kind of testing she does in clinical care and things she tries as symptom treatments; LDN, diet, supplements, IV fluids, beta blockers and more as well as teaching patients about activity management and pacing.

She mentioned "Polyvagal theory" (at approximately 37.50) - a kind of brain training of the vagus nerve. This sounded a bit odd, but I've never heard of it before and know nothing about it.
She also used a model for ME implying improvement from activity management. A bit surprised to see that model still being used.

But all in all a good lecture. The Q&A section were mostly about medications.

 

I've only watched the first 40 minutes. Nothing much new to us but overall quite good. But also some odd bits.

I googled "Polyvagal theory", just very superficially. TBH, it sounds like a form of brain retraining dressed up in academic clothes. Admittedly it would be preferable to GET or increase-your-activity-type CBT. Less likely to do the same sort of harm from overexertion and it sure is a lot more agreeable to lie back and make yourself feel safe by visualising something pleasant. Though there's still plenty of room for patient (self-)blaming if it doesn't work. I wonder if it's basically a sort of self-hypnosis? (Something I tried to teach myself at one stage when I had big issues with pain. The idea of mentally "removing" myself from the pain was very appealing. Didn't work though.)

She says Polyvagal theory is not for everyone and reports success with sensory sensitivities. Could that not just be that patients admitted to their ME hospital are finally getting the quality rest they need to improve a little bit? Smells a bit of attribution bias.

Yes, those stages were a bit weird. She said she had followed a number of patients over may years and some - but not all - were moving from the stabilisation to the mobilisation stage where they can do a bit more. This just sounds as if some are naturally recovering a little bit and others don't, as you'd expect. Mobilisation is a weirdly active word to describe that, it suggests it's something you're doing which is causing the recovery. More attribution bias?