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I also noticed that the audience applauded in response to what it perceived as empowering, positive and courageous statements. I thought that is an illustration of the popularity for certain ideas that can make people overlook problems with research and lead to response bias on questionnaires...

She says she has fibromyalgia, that it can be treated by a mental health professional, that she was raped when she was younger and that this trauma caused fibromyalgia. But she also says that we don't know what fibromyalgia is and that we need to figure it out. A bit contradictory.

@dave30th some patients accept and believe the idea that emotions are the root cause of their illness. Like Lady Gaga recently. Whether these patients are mistaken or correct is a bit hard to tell. I have however just read a twitter thread by a German emergency doctor that visited a man at home...

Is there any reason to think this is not pure circular thinking? Someone made a long and varied list of symptoms they believe are caused by a disorder they believe exists, called central sensitization syndrome. Someone else then goes through a list of patients with hypothyroidism and finds...

Thanks this seems like a useful observation, even if I think we already knew that a lot of people presenting with possible (broadly defined?) CFS to a GP are going to recover even before the six month mark.

Exactly. Claims that this is a new approach should be seen as marketing for an empire building project (or perhaps a cost savings project). The only thing that's new is the language used, and some feeble attempts to give credibility to the concept with neuroimaging studies. The people involved...

Carnitine has been studied extensively because it is important to energy production and is a well-tolerated and generally safe therapeutic agent [7]. Researchers prefer to use acetyl-L-carnitine in research studies because it is better absorbed from the small intestine than L-carnitine and more...

Yes, I forgot that my sleep was also negatively affected, but I continued and after a few weeks this disappeared. I take 500 mg because 1000 mg seems to be a bit too much. Ideally I would like more of the anti-fatigue and endurance enhancing effect of it with less of the mental stimulation part...

On the topic of treatments: So there is a total absence of treatments that are likely to be tested under conditions of adequate control of subjective bias. The comment about placebo as therapy itself is hilarious.

I wanted to write about my personal experience with carnitine as treatment for ME/CFS. I'll try to apply some critical thinking as well. A few years ago I first tried carnitine injections. They appeared to work but were also painful and had to be given often which was inconvienent and...

One gets the impression the push for functional disorders is how the medical community in Denmark tries to deflect the suspicion that the HPV vaccine causes some still unknown disease. Seems like an own goal because there's hardly a better way to create distrust than using such an obviously...

One of the complications of making first contact with EBV at an older age appears to be ME/CFS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5393566/

Time for some satire: I've come up with a fantastically effective treatment. It involves threatening a person with 20 lashes from a whip if they don't immediately feel better. I believe it works by acting on the brain. The threat of physical harm appears to instantly shift the brain into a...

Another problematic aspect is that patients are apparently de facto treated as having false illness beliefs on the basis that it's not possible to "objective demonstrate a disease". You can't just assume this. You have to, you know, demonstrate that there are false illness beliefs ;) At least...

Something that also bothers me: How would one go about distinguishing biased self-reporting from an actual improvement caused by a placebo, in the context of a "subjective" illness? Surely they must realize that obtaining what appears to be an improvement with a placebo treatment cannot safely...

One gets the impression they think the root of the illness is a self-perpetuating negative thought process and the placebos are an acceptable way to deliver a positive stimulus that patients need to disentangle themselves from their dysfunctional thoughts. They would never openly admit that...

Wessely appears to be implying that placebos are an acceptable treatment for "subjective" conditions.

It's probably only a club for the "good" activists. The ones that don't make anyone important look bad and don't threaten commercial interests.

He always tries to shift the focus away from whether the science is actually good or not. This is not what a honest debate looks like. If he was honest, he would explain for example why he thinks that PACE trial adequately controlled for placebo effects.

Another way to respond to these comments is to add your own comment expressing support for the project.