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Fever is definitely not part of my illness or PEM. I’ve sometimes (not frequently) felt like I may have a temperature, even had that same sort of weird feeling you can get when feverish, but whenever I’ve measured (digital thermometer under the tongue) my temperature has been around or under...

It’s my big concern for any drug trials. We don’t have any drs that can look after us now so trusting them to do in a trial seems… a hurdle we need to fix.

Not sure if this has been posted but PrecisionLife posted a response to the Delivery Plan https://precisionlife.com/blog-supporting-progress-in-mecfs-and-the-patients-still-waiting

A couple of links from PrecisionLife on this Details of their attendance at the World Congress on Endometriosis conference in May https://precisionlife.com/news-and-events/wce2025 And more informatively information on “Characterizing the genetic and biological differences between endometriosis...

I feel similarly to you @Sasha but then again companies like PrecisionLife seem to think otherwise. It will be interesting to see if their analysis of the DecodeME data backs up what they’ve said and found in the past or not.

I hadn’t heard about it and it seems pretty unmanageable for many. Especially over the summer months when many severe people struggle even more. Seems a long way from the great engagement from the people running the AfME survey.

These tools can make great leaps, and do things unexpected and new, the example of AlphaGo is a great one for this. As is I think things like protein folding or the maths challenges. It requires very specific domains with clear rules and concepts of what is ‘correct’ as well as the ability to...

It’s not just the model it’s how they’re used. And I think that’s where I’m comes down to who is using them but also what their expectations are. Quite a few people on these forums will know I am probably ‘pro’ AI, see great potential for AI/ML (including LLMs) and anyone who follows the field...

Ah yes, “strength, clarity, and resilience”, that’s all you need, “along with my phone number and your credit card details” (probably).

Thanks for your expert eye @jnmaciuch So the sceptical view is they may have found something (that MAIT cells are there and likely doing something which is helpful), but it’s in mice and the wider narrative they’ve drawn may be a stretch?

I had a bit more of a dig and there’s more from the same group. Still mice but it’s obviously something someone has an interest in… not sure if it adds anything of use to us but for reference https://link.springer.com/article/10.1186/s12974-025-03413-7...

Here’s the article in ACS Nano https://pubs.acs.org/doi/10.1021/acsnano.5c12083

I’m not sure it’s being ignored, more perhaps a case of asking what is the mechanism that keeps it going? So in the fire analogy a spark may trigger it but to understand and extinguish the fire you need to understand different mechanisms.

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.