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I tried to make a compromise with doctors who had BPS views before I knew enough about BPS stuff and they gaslit me first into exercise and then into pushing past my baseline. Deception is baked into what they do at the ground level. Deception of patients, of doctors, of funding bodies, of...

I think this is the only possible way forward. Their clinics seem entirely compromised to me. I don't think compromise is possible with people ideologically opposed to the foundational aspects of your illness. I have a follow up with the local MECFS team tomorrow and I predict just being...

Could someone hurry up with the real science please? I'm tired of charlatans.

Where are the recover ivig trial results? Its been going on for long enough...

It's very well written as is. If you wanted help polishing it up or rewriting it with a more detached tone for publication in the media I could give it a shot. Obviously it might take me a little while. It would depend where it was going to be submitted what would need doing to it. I wouldn't...

Unless they've had advance sight of the Charite immunoadsorption blinded study results and they are positive (which is entirely possible) this seems premature to me. At least they are using placebo from the start. But surely there must be a more effective and less arduous to administer drug...

At this point, all I have to say to them is: do a well powered RCT or shut up.

DCC is the one that came up recently in fibro right? And OLFM4 seems like a significant one too. Its good we can be a little more confident about them.

https://s4me.info/threads/analysis-of-mucosal-immune-dysregulation-and-safety-and-tolerability-of-endoscopic-topical-steroid-therapy-for-lc-hyposmia-dbrct-2025-kim-et-al.48014/ Could the T cell data from this paper be relevant?

I would say my course was like (prodromal phase) - trigger - very mild - mild - mild/moderate - mild - (GET) mild/moderate - (end GET) moderate - severe - very severe - severe (with a couple more repetitions of the last step) Fwiw

@Jonathan Edwards could this be relevant to your recent bone marrow theorising?

My understanding is many pwME have very bad reactions to steroids.

But treatment hasn't turned a corner - wtf are they playing at here? The whole article is about how we need research funding so treatment can turn a corner :banghead:

I have been in a long covid group from 2021 onwards and a huge proportion of people improved within the first couple years, many to remission level and left the group. The ones who didn't are still pretty much where they were or worse.

I developed excessive thirst and diuresis a long time before I became bedbound or even was significantly ill/disabled. I caught a vomiting bug when I was 17 and developed it afterwards from what I recall, and have struggled with it (and eczema) ever since, but when my ME/CFS hit properly at 26...

Underscore underscore underscore underscore underscore underscore....

Terrible headline aside, I just can't believe the MRC/NIHR have been so absolutely useless post DecodeME. Not that they weren't useless before. But not to see the opportunity staring them in the face here is just mind boggling levels of institutional incompetence and neglect.

So realism in this context is leaving us to the wolves? I quite literally despair.

I would like everyone who uses this phrase to have to spend a month in my body so they can learn the terrifying reality of what happens when you ignore PEM.

I agree negative results are important but as I understand it a breakthrough means a significant positive result that changes understanding of a disease.