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Research utilising standardised outcomes DESIGNED BY patients may indeed advance the field by eliminating all of the treatments that don't work. 'patient research partners' doesn't mean ME patient. Here is the profile of one of those partners: https://sciprofiles.com/profile/1679339

Has anyone trialled a "give money to patients" study. Basically, whatever money they'd spend on therapists handed directly to patients? :D

I had similar symptoms from late March last year, my labyrinthitis took about 6 months to recover, I still have some ear blockage issues. It also infected my mouth, causing significant gum recession and I still have strange mouth/gum pain. I'm not sure this was due to COVID though.

Yet this is simply contradicted in the next paragraph: If it isn't physical, then what is it? It's so disappointing that the people who frequently mention how mind-body dualism is the problem and the reason why illnesses are not understood, are often dualists themselves.

I know someone with ME who suffered from encephalitis after a bacterial infection that came from the lab they worked in...

GBS is characterised by severe paresis/paralysis that starts in the extremities, typically the legs, though sometimes the arms. Occasionally there is a facial variant. Foot drop associated with GBS is never 'occasional', but continuous and takes months to recover from (if there is full...

A shorter-term study (median 6 year followup) https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-1331.2008.02311.x

https://pubmed.ncbi.nlm.nih.gov/22336700/ Notably, 47% of participants reported long term fatigue on the questionnaires. Unfortunately, this wasn't a true prospective study, nor did they use objective measures of functioning or fatigue. Anecdotally, some post-GBS patients do suffer from PEM...

The true believers in the "powerful placebo effect" have no problem with magical healing crystals, though some feel that mainstream medicine should have a monopoly over placebo effects (rather than complementary/alternative medicine).

Recovery of deleted deep sequencing data sheds more light on the early Wuhan SARS-CoV-2 epidemic https://www.biorxiv.org/content/10.1101/2021.06.18.449051v1

They forgot the *magic happens here* bit.

https://www.dailymail.co.uk/news/article-9712333/Four-Brits-develop-Guillain-Barr-syndrome-just-days-having-AstraZenecas-Covid-jab.html Anecdotally, I've seen over a handful of cases reported (by individuals) after the Pfizer/Moderna vaccines too. I don't think this is specific to the AZ vaccine.

They're not saying patients never suffer from PEM, they're saying that some patients just happened to be suffering PEM (for whatever reason) during the incidence period of the study.

The SARS outbreak in Hong Kong started in February 2003 and they discovered a link to palm civets in May 2003, so claiming it took 10 years is very misleading. That is also false. Wuhan is no where near any bat colonies. The Yunnan bat caves are around 1800 km away! The "lab signature" idea...

All of the potential measures are of low quality. https://onlinelibrary.wiley.com/doi/epdf/10.1002/ejp.1670

I disagree that it is the primary bias, though it is certainly one of the possible biases. "Expectancy" is often discussed as a mechanism for inducing the placebo effect. What is often implied, is that is there are real (and clinically significant) biological effects that are induced due to...

My personal preferred term is "randomised comparison trial", rather than "randomised controlled trial"...

I'm not sure how this paper is relevant to trials of CBT/GET, such as the PACE trial. The problem isn't "expectation"/expectancy effects. Indeed, initial expectations of APT were as good as CBT or GET. The problem isn't necessarily placebo effects either, but biases in reporting (response...

Not serious shortcomings, no. Checking whether there was differential bias between the clinicians is possible, but this is not the same as being able to control for bias if all the clinicians caused a similar sort of bias.

Sounds like what is wrong with traffic engineering. No other engineering profession would tolerate such high rates of injury and mortality...