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Yeah. I would like to see more focus on social care from charities. There’s obviously a demand for treatments but there are none. Meanwhile we know what many of us need to live a better life. Safe managed environments to live in which avoid triggers of worsening and have our basic needs met...

Looks like an extension/continuation of the ME Trust service. My experience is this was not useful or accommodating of the needs of people with severe me/cfs.

I’ve seen some really interesting work with adversarial iteration until agreement is reached. Sounds like what you’re doing?

Plenty of those in medicine who peddle disinformation and sycophancy as we well know.

Interesting @Mij I think something like thst was mentioned on this which I was listening to recently https://www.bbc.co.uk/sounds/play/m001byym And some of thenother points raised where discussed. A good listen

Yes I meant actual research not personal stories, sorry if that wasn’t clear.. I remember people had looked at family history and me/cfs itself but wondered if anyone had looked at the data of other conditions.

Has anyone looked at family history and incidence of other neurological conditions in people with ME/CFS? Are people more likely to have family members with PD or other conditions? Would this even be useful given we’re now getting direct genetic data?

Some more discussion on daratumumab and the blood brain barrier here https://www.jnjmedicalconnect.com/products/darzalex-faspro/medical-content/darzalex-darzalex-faspro-blood-brain-barrier-and-central-nervous-system-involvement

Thanks. I wondered about that. It seems cited in lots of other papers but guess that doesn’t mean much.

And this paper talks about effects of inhibiting CD38, which I think an anti-cd38 mab would do in some circumstances? May tie in to the NAD+ stuff above? Inhibition of CD38 and supplementation of nicotinamide riboside ameliorate lipopolysaccharide‐induced microglial and astrocytic...

I have been pondering astrocytes and CD38 and apparently daratumumab (edit: may be able to) cross the blood brain barrier The Daratumumab Crosses the Blood Brain Barrier, 2018, Vercruyssen et al Vercruyssen, Marie; El Hachem, Georges; Maerevoet, Marie Abstract NK/T cell lymphoma is a rare...

Speaking about some symptoms with my mum who has PD there are sometimes similarities. Obviously around sleep problems but also just other sort of neurological oddities, sometimes what people make cause physical/emotional responses and hypersensitivity but in PD they’re more clearly tied into the...

Some ideas to help people if they choose to write to their MP, an organ8ed campaign may help but we don’t need to wait and it all helps https://www.s4me.info/threads/asking-uk-mps-to-get-behind-funding-sequenceme-and-wider-investment.45551/

Sorry if this goes off on a tangent, I’ve not kept up with the discussion but had more thoughts on those topic, s9me notes from this week. Particularly while thinking about a lot of the unpleasant symptoms I’ve been experiencing this week and how they could be explained. So we’re looking for a...

What is is you find interesting here? Can you elaborate.

I wonder if there can be things learnt from findings like the drop off in grip strength on repeated grips here? What sort of neural cells and mechanisms could be involved there? That seems like perhaps a more known or understood area than some others?

@Timko I don’t know about others but I don’t think it needs to be one or the other. I see a few interconnected systems at play. You could have something like the issues with interferon-response resolution @jnmaciuch talks about but also something a little off with say certain NK cells or their...

In the same way as we have certain immune cells primed or more easily activated we can have certain neural cells, specific groups of neurons, primed and therefore closer to (or further from) their threshold potential. So making them easier or harder to trigger. The idea of either a shift in...

Nothing useful to add atm other than to say something like fluctuating crosstalk within specific neural cell groups subjectively feels like a lot better explanation for a lot of my experiences than other theories. Not to say this is the whole explanation of course. More a few different loops in...

You’re vey welcome, glad to hear it’s useful. I’m very interested to hear what you and others make of it all.