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I still think this is outrageous. That was the point I was trying to make. Psychobehavioural views stemming from Victorian era conceptions of hysteria etc would have been better.

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

I never said it was. I agree there are big problems with the MCAS label. I believe Afrin even claims it causes autism. But there are a huge amount of pwME and LC with new onset allergy type symptoms triggered by a range of things. And many of them manage this with antihistamines. Some of them...

For the record the other week I ate a high histamine meal that wasn't spicy and the same thing happened. But I've also had it happen a few times recently when Ive stuck to diet but am in PEM.

Could this explain the gut issues in MECFS if the OLFM4 link proves genuine?

I have no wish to rehash the legal action thread unpleasantness here so all I will say is that what Wessely et al did with MECFS is if nothing else incredibly instructive and important in terms of the history of public health in this country.

I think if they cared that little there wouldn't have been the coordinated smear campaigns against the PACE reanalysis, NICE guideline and DecodeME. They are desperately trying to defend their legacy.

Absolutely. I mentioned this in the context of legal action once but even aside from that topic it is important for history.

I once proposed someone create an archive of what BPS types have said, because if there is a breakthrough they will scrabble to erase that stuff from existence...

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?