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Well, I had to abuse my power to achieve some sort of personal benefit out of the study.... ;) [For clarity for everybody else, the above is a joke - I had no expectation that I would end up where I did in the list of authors. What I do think is fantastic though is that all patients and carers...

But that is the exact opposite of what the BPS proponents want. They want vague, badly defined scales and measurements, that basically mean and measure what they want, rather than what we, the patients, want recorded. If we had accurate disability and functionality scores that applied to ME it...

Social media links if anybody wants to help out by sharing them. https://www.facebook.com/decodeMEstudy/posts/pfbid02gRQSCpXBTVLhQyC1AG15jcexcspRi8Em3fBexJ6LWtNyDDtU9H7kDrnjApZ64AtHl

DecodeME study protocol published in BMC Neurology "The DecodeME study protocol has been accepted for publication by BMC Neurology. By publishing our study protocol in this way, we make sure that the design is transparent. This allows other researchers around the world to replicate and build...

Abstract Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack...

"Colin Blakemore (1944–2022) Neuroscientist, science communicator and advocate for openness in research." "In the 2010s, a small, outspoken group of campaigners demanded the retraction of MRC-funded research into chronic fatigue syndrome, also known as myalgic encephalomyelitis, which found...

But do you have non-PEM fatigue (as defined as a lack of energy compared to the average healthy person) and if so is that relieved by rest? That is what I would imagine you are being asked about, but it probably isn't clear because the questionnaire creators wouldn't have considered how a...

Perhaps he could be asked about his remarks at this event?

From the linked flyer "This project aims to investigate the role of ion channel dysfunction in ME/CFS and PVS patients as potential diagnostic and therapeutic targets. We are recruiting the following participants: • ME/CFS group: participants who have received a diagnosis of ME/CFS (where...

Abstract In addition to chronic widespread pain and depression and anxiety symptoms, patients with fibromyalgia frequently experience cognitive problems. This study investigated executive functions in fibromyalgia via a Go/No-Go task. To obtain comprehensive information about performance...