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I hadn’t fully appreciated these factors in the approach you’re taking and it makes a lot of sense. Look forward to hearing more on what you find. Beyond that, there’s lots of interesting discussion here, most of which is beyond me but hopefully I’ll be able to do some more reading.

Interesting. So the clinic obviously wasn’t a going concern financially speaking? I guess we watch and see if/what impact this has on their research arm and work with PrecisionLife… Edit: I really dislike terms like “healthcare journey”

I see your point. And agree that saying we don’t know for sure is probably best. We also do not know that there is a prodromal or early phase or that there is a progression, many talk of sudden onset. And I think that is the argument, we have no evidence that inflammation or any of this is...

But don’t we know that it is not universal? I had loads of blood tests early on because I was hospitalised for a serious infection and CRP was fine and was for those initial years. Isn’t this part of the problem we’re talking about? Not just that these things are not universal in people with...

Agree with this and the comments from @MrMagoo and that this is part of a wider thing, not just ME/CFS but a general quackery and use of ‘inflammation’ as a term to justify it. So we seem to have covered (i) questions over definition (ii) issues of reproducibility and mechanisms within ME/CFS...

Sounds like a load of Advanced Rehabilitation Service Eh Sorry, not particularly analytical but people profiting from desperate sick patients are the worst imho

Yeah that’s the other aspect of this isn’t it, beyond definition of what inflammation is, it’s reproducibility and mechanism. Even if we could agree on what inflammation means we couldn’t say for sure everyone with me/cfs has it let alone why. I guess that applies to a lot of claims.

No question that is honestly seeking to understand something is unnecessary.

It’s a great question and I look forward to the responses. My uneducated reading is inflammation is specifically about permeability of blood vessels, so tissues actually get inflamed. While a lot of what is talked about as inflammation is more inflammatory adjacent signals (like cytokines), so...

Welcome to the forum @TGuven

Great, thanks. I’m just posting in this thread so people should be aware of the source but it’s the DecodeME team from their webinar on their facebook page and it’s a pcloud share so freely available https://u.pcloud.link/publink/show?code=XZyDiW5ZVromEDI80OXT4WvoJue2i5erTIDV Hopefully this...

I was able to rip the audio from that facebook link without an account. Is it okay if I upload or share it somewhere @Andy ?

Oh! Sorry I completely misunderstood.

Presumably that SequenceME intends to sample using the stored saliva samples from DecodeME means we will be able to answer that question?

Interesting overview, and next steps, thanks all, some good passionate calls for more research and @Andy you nearly had me in tears talking about the response to the study

I came across this paper earlier in the week when looking for the anaphylaxis paper from Northwestern and it stuck in my head because of the mention of Lupus, but it has Interferons too, and a thread here already...

Came across this while looking at MAIT cells, also discussed in this article https://pmc.ncbi.nlm.nih.gov/articles/PMC9894298/

Mucosal associated invariant T cells restrict reactive oxidative damage and preserve meningeal barrier integrity and cognitive function Zhang Y, Bailey JT, Xu E, Singh K, Lavaert M, Link VM, D'Souza S, Hafiz A, Cao J, Cao G, Sant'Angelo DB, Sun W, Belkaid Y, Bhandoola A, McGavern DB, Yang Q...

Looks positive. The variation in care and support for people with things like PD is huge. This is on top of obvious resource issues.

@jnmaciuch do you have any recommendations for reading on interferon, particularly in the context of some of the mechanisms you’re envisioning?