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We’re mostly on the same page about the broadcasters, but as you say they pretty much only repeat what trained doctors and researchers say. Very few of them create their own theories etc. I can’t think of any other major disease that has been treated as badly for as long as ME/CFS. Maybe...

I agree that spreading misinformation causes harm in this context. But the patients have a very substantially lower innate ability to recognise the biobabble for what it is. They lack the biological knowledge to understand what’s plausible or not, and understanding the fatal flaws of the...

The discussion section only consists of the authors refusing to acknowledge that their trial produced null results. They list numerous explanations for why the treatment might actually work, they were just not able to show it. The denial is very real..

People keep putting it out there because the real doctors don’t do better and help them understand that there’s a lot of biobabble going around. The responsibility and accountability lies with the medical profession.

Ursin and Eriksen developed the Cognitive Activation Theory of Stress in 2004 (one of the bedrocks of Wyller’s theories). Ursin and the lead author Svendsen work at NIPH, the home of e.g. Larun, Rørtveit and Flottorp. NIPH is a BPS hotspot and they are responsible for our current covid strategy...

So they’ve completely missed the point even though it’s right in front of them in their own text. Inclusion criteria are far more important than PROMs. And they seem very keen on using PROMs without discussing the important limitation that is frequent lack of blinding. They also ignore...

No, they looked at more than just MCAS:

«If the patient becomes too annoying for you, consider telling some fairytales at their expense and risk.» How very responsible of the practitioners..

I’m glad the trauma babble gets called out based on how poor the research is. It’s rare to have someone acknowledge the fundamental flaws. Although that makes it quite ironic that they seem to keep defending their own approach based on equally terrible data and results. Do as I say but not as I...

I can see how that would be a issue for fields like art. Although the problem in medicine is that e.g. Wyller gets funding for quasi-immunological studies that are meant to disguise their trials of «behavioural experiments» on acute ENV patients. In this instance, funding bodies can say they...

Case 1: 70 year old female. Severe Covid April 2024, first infusion February 2025. Case 2: 63 year old male. Covid August 2021, infusion April 2025. Case 3: 57 year old female. Covid May 2021, infusion August 2025. The first case could be a self-resolving PVF case. The other two lasted for...

That sounds about right from my experience with funding bodies in unrelated fields in a different country. I think it’s universal.

Can’t find a thread for it, but here’s the study: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5

If I’ve understood things correctly, it’s normal to approve drugs after a positive phase 3. Then you might do an even larger phase 4 to understand even more about the nuances and long term dynamics. Others might know if ResetME would be sufficient for approval given a clear cut positive result...

That’s probably this: https://www.s4me.info/threads/united-kingdom-invest-in-me-news.13421/post-531879

This one is for Trial ID: 2024-512500-19-00, which is the pilot. They’ve described ResetME as a phase 2/3 trial previously. I don’t think the number matters much. If ResetME is positive, an even larger scale might be warranted to get even more data on who it works for and why.

I struggle to make much sense of this data. Surely there has to be a better way to present it? They are planning an open label phase 2 study. Seems like a step backwards.

Seems to be the page for the pilot.

@Dx Revision Watch thank you! That’s a step in the right direction

Yup. It survives because it’s convenient, not because it’s effective. As does the rehab industry.