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I suspect there is little to no outright fraud in CFS research because they know their work tends to be scrutinised with a fine tooth comb. They don’t need to fabricate data, though, to obtain desired results since they can just rig the outcome by using laughably biased outcome measures.

Stumbled on this old paper on nonepileptic seizures (FND) and tilt table test. Head-up tilting is a useful provocative test for psychogenic non-epileptic seizures

So true. Any language such as complex, multifactorial etc is a HUGE red flag. It means “needs psych referral”.

The issue with this paper is that you have to accept the premise that pts with ME/CFS have beta adrenergic autoantibodies. This is frequently asserted but as far as I can tell totally unproven. There are papers from German researchers claiming this as far back as 2013 or so. If it’s so...

Unfortunately these words don’t mean anything. They don’t add up to a coherent scientific mechanism.

That quote shocked me too. Since nothing is known about mechanisms of FM and Long Covid I wonder if he meant to say that even in the hypothetical future when we know a lot, the treatments could still be far off. It’s understandable that they are trying to dampen patient enthusiasm. It’s an...

The abstract is amazing in its deception. There was no significant time x group interaction on any outcome measure. This is the relevant result in such a study design. The correct interpretation is that the treatment did not work. But the conclusion is worded in a similar way to the PACE long...

Looks like another scam.

Sure, let’s say you have two groups, patients and controls, and you're interested in whether they differ on some outcome you're measuring in your study (e.g. antibody, score on a fatigue questionnaire etc.). The usual approach to this problem (you'll see this in every published paper) is to do a...

In statistics, an effect size is a number measuring the strength of the relationship between two variables in a population https://en.wikipedia.org/wiki/Effect_size

Yep. From the outset they are weeding out people who aren't suggestible by using prescreening questionnaires, looking for people who are high in personality traits agreeableness (going along to get along) and openness to experience. These sorts of people are willing to try reckless, random...

Going in an randomly editing parts of the genome will probably end up having lots of unintended consequences, such as maiming and killing ppl.

There is no evidence that any treatment improves symptoms of FND.

That’s the part I’m struggling with. I automatically assume that any paper in this field has a 99.9% chance of not being replicable. But unless this is another XMRV type situation, it’s hard to explain away the fact that the disease was induced in animals.

Thanks for sharing this harrowing experience, Parsnip. It’s very difficult to speak about informed consent or free will once treatments like this are out there in the public consciousness, promoted by the media and, increasingly, the medical system. The situation is dire for teenagers. Even for...

I wonder if the Biobank could be utilised here. I hope we don’t have to wait a decade for replication (or lack thereof).

Wonderful suggestion. I’m sure they’ll volunteer without hesitation seeing as FM is all in the mind.

Excellent point. It’s one of those things that’s been grandfathered in. “Everyone knows” psychosomatic conditions exist. The purported treatments have virtually never been tested because on some level they know the results would be DEVASTATING.