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I think this is pessimistic. They can attempt to wriggle out of it but at present the idea that they might be right is very prominent and once they are proven definitely wrong it will be hard for them to wriggle out of it. It will be obvious to the public what they have done.

I think men are socialised to ignore and push through fatigue and illness and pain and it's part of our identity to be tough and not give in. Plus a lot of men just won't go to the doctor. So i think it's likely there are a lot of men out there with mild MECFS who are pushing through/and or self...

Leptin has come up a few times recently no?

Didn't liver come up in a study by Ponting's team?

43? That's absolutely shocking - how was this not reported? What drug that made that many patients much worse and had such minimal improvement even with *totally not research misconduct* would be approved? But of course if the doctors in history's most biased medical trial say they're not worse...

What would that difference in drug metabolism suggest?

Good idea. I'm afraid I don't have the capacity for this atm, would anyone else be able to take it on?

That is really interesting. It would be really good to get a team looking at this in a decent sized study.

You may well be right, but you are wrong to classify it as the past. It is the present for me, as someone who went from mild to severe as a result of gaslighting and medical negligence. Every moment of my life is defined and constrained by it, and will be until there is an effective treatment...

Oh no I get it and I agree, I'm just saying we have a community full of individuals who have been harmed by individual doctors, and some of them will be compelled to publicly say 'X doctor did Y to me' once they are likely to be met with support as opposed to ridicule and disdain. Which might...

Anyone know why this work was abandoned? Did the team just move on for whatever reason? This seems interesting, and I wonder what the next steps in investigating if it's a mechanistic clue would be.

I think this is sensible. Emotionally, however, it might be difficult for some of us. My GP who first falsely convinced me of a psychobehavioural element to my symptoms was probably more ignorant than a zealot, but it would be hard for me let him off the hook for the damage he caused. Even...

I vaguely remember him saying this at one point but did they publish it?

Yes as you say, it's incredibly unpleasant. I wear noise cancelling earbuds or regular earplugs a lot of the day because sounds can just be unbearable sometimes. Rustling of plastic bags and stuff are torturous. I usually can't listen to more than a few songs in a row before I have to take a...

I really find it frustrating that Wirth is so confident in all of this, despite not having done a single study to confirm. He makes so.many confident pronouncements that are just pulled out of his rear end as far as I can tell. For example: for what reason would this drug not help severe...

If WGS brings us to a solution for MECFS, a disease noone really had a clue what to do about, maybe it will bring about a revolution in research where it is done for more and more conditions.

This discussion has been split from SequenceME - genetic study from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME I hope you are right about this. My concern is that the medical world has been so thoroughly captured by the BPS argument that it will refuse to see...

I hope you are right about this. My concern is that the medical world has been so thoroughly captured by the BPS argument that it will refuse to see the truth until there is an effective treatment. The amount of harm medical professionals would have to own up to is completely mind warping - it...

https://www.wheresyoured.at/where-are-all-the-data-centers/ Only scanned this just now but it seems relevant

@jnmaciuch and @hotblack might have some thoughts about this