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I hope you’re right. And while I agree in theory that it seems odds they’d want to get involved, I’m still concerned. Maybe what I experienced, seeing them outlining what resources they’d want and need to in meetings with those responsible for commissioning services was a bluff to put people...

I wholeheartedly agree. I have in previous years, when I flagged the issue up the chain locally, seen the BACME service lobby the commissioners for what they wanted in terms of more resources (and money) to ‘support’ people like me. It would have been another Leeds. Giving ‘hope’ to patients no...

No idea. It depends what the problem is and we still don’t know that. NK cells may be a red herring. I’m just exploring ideas, although I’ve always been interested in alternative explanations for why daratumumab works. Assuming it works in a particular way then only thinking about other...

And there has to be motivation in terms of careers and reputations and money to fund it all. Just like with research. There’s a reason people left the field a couple of decades ago.

ME/CFS advocacy groups and charities

*sigh* I never got knotweed off my mums allotment and now we can’t get this invasive and damaging pest out of our lives. Napalm maybe?

If interferon gamma is mainly made by T cells and activated natural killer cells, could what what's going on with daratumumab be more something to do with this and somehow changing the type or makeup of gamma that is made or allowing a reset here somehow? Could the people with more NK cells...

Yeah understood @Kitty and I know your good intentions here. I was a bit unwise of me to respond to your post because I was expressing more general thoughts on this area. Sorry about that. I just feel at some point we're gonna have to rip the plaster off to make things very clear to as many...

A shame it’s behind a paywall, I can’t even seem to get the full size versions of the figures from the side bar to see what the differences observed were. Am interested in understanding more particularly due to theories around mtDNA and extracellular mtDNA but a bit difficult to comment on, so...

This is, in my experience, what the BACME clinics do. Exactly as you describe. They use the framework so seem legitimate, and that’s part of what causes the harm to severe patients. Others in the NHS think there is a suitable pathway and we are being cared for when we are not. Even if the...

This is what so many in the medical world seem to ignore about ME/CFS. There needs to be work to gain back the trust of an entire community. You cannot deliver medical care or work with patients without trust (this of course applies to psychological but also non psychological care). We’ve seen...

They seem insistent on repeating the same mistakes of the past… Hope tomorrow goes well.

I posted these altogether as it’s all part of the same sort or chain of thought, inspired by some of the ideas @jnmaciuch has around type I interferon and also wider discussions of sickness behaviour, fatigue, and some hunches I have after looking at PrecisionLife and DecodeMe data. So there...

Hypothalamic damage in multiple sclerosis correlates with disease activity, disability, depression, and fatigue 2017, Kantorová et al Abstract Objectives: Disturbances in the hypothalamo-pituitary axis are supposed to modulate activity of multiple sclerosis (MS). We hypothesised that the...

Interferon-β1a modulates glutamate neurotransmission in the CNS through CaMKII and GluN2A-containing NMDA receptors 2016, Di Filippo et al Abstract Interferons (IFNs) are widely expressed cytokines with antiviral and immune-modulating effects and have been utilised for the treatment of...

Effect of interferon-αon cortical glutamate in patients with hepatitis C: a proton magnetic resonance spectroscopy study 2013, Taylor et al Abstract Background The development of depressive symptomatology is a recognized complication of treatment with the cytokine interferon-α(IFN-α) and has...

IFN-Alpha-Induced Cortical and Subcortical Glutamate Changes Assessed by Magnetic Resonance Spectroscopy Abstract Cytokine effects on behavior may be related to alterations in glutamate metabolism. We therefore measured glutamate concentrations in brain regions shown to be affected by...

Sounds like a voiceover for a horror movie! Maybe a niche one anyway. I suppose even if other cytokines don’t have this property, if macrophages and/or the jak-stat pathways are ‘primed’ by gamma, then things can be more easily triggered by non-gamma? As described in your original theory?

It looks like other than IFN-gamma they also tested with LPS and IFN-beta and didn’t see this persistence. But I wonder if we could see similar persistence from IFN-alpha (I guess unlikely given beta doesn’t) or other cytokines like interleukins? Relevant bits from the paper below: And later

Sure, I was thinking more of the value of the framework that is being worked up by people like Joan than your factsheet. That’s what I originally pointed @Concentric_Spiral to. There’s obviously some different perspectives on what psychotherapy is and where the values lie as well probably as...