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I suppose AI is only as good as the instructions it has, rubbish in = rubbish out. I honestly feel like it’s not even AI’s fault, it sounds like they’ve found an old Fitbit app and tweaked a few algorithms. It just sounds very much like the start point was a well person and some bits have been...

I wanted to try this out and I haven’t got round to it. Trish this sounds awful - absolutely the worst. Telling people down to the exact step how many steps they should do! Making you have a 15min nap? Telling you you are able to cook any day? This is terrifying, this is like if Visible had an...

That boilerplate is on everything thesedays.

Thank you!

Is anyone able to let me know the biology based outcome of this paper/research?

I am not a scientist Iam foggy I can’t read all those walls of text. I can’t follow all those side papers and things. I was quite interested in the biology as that looked interesting in the before-and-after scenario Sorry but if you can’t summarise a response in a simple sentence, a few words...

What did the paper you worked on conclude? That is the topic of this thread!

but is all this in relation to the study this thread is about? I’m not sure this answered the two questions I asked that you, can you answer with a sentence please?

Ok did it answer why do some become ill after infection (of Mono) and develop ME, or Covid and develop LC, others don’t? Am I right in summarising you looked at biology before and after infection? In what ways did the biology change? What caused the change in some and not others? Was it the...

When contacted, Peter White said all these criticisms are old news… He’s not wrong, that’s the thing when they’re valid.

I’m sorry I don’t understand what Il-5/6/13 means I don’t understand how the cytokine irregularities are measured is it by a lab test?

Genuine questions- What was the value of this study anticipated to be? what was it about the possibilities that got a team so fired up as to invest their time in it?

I was remembering my old job the other day thinking about a project we did and the Gantt charts lol. All the interdependencies. Basic project managment. Why are interdependencies so alien to medical research? If you see ME/CFS symptoms as interdependencies it’s makes it so simple.

We are not asking for naratives to be used or quantified though. As per usual with ME/CFS, it doesn’t follow a neat pattern, it doesn’t fit into any of the boxes we have. If the existing framework of methodology, IRB guidelines, peer-reviewed publications are making it impossible to research...

Exactly Reminds me of a post recently where another forum member explained that Long Covid has a severity scale of its own, but Severe in Long Covid is only similar to mild ME. These concepts are already well-established.

I want to know why they are funding it and how come their comms officer is a part of the research team.

I appreciate you coming back and what you’ve written. I myself am not a scientist, but I can name off the top of my head two other researchers in the past two years who complained about one way or another about the attitude from patients and implied they won’t keep helping or we are “known”...

Sadly, we get a lot of help we didn’t ask for, don't value, didn’t want and then are blamed by the people who cannot take any criticism. You can’t please all of the people all of the time. That’s part of life. Just as you are not “just” a researcher and scientist - you also have ME, in this...

Controversial take - towards the end of my time working I was following ADHD coaching advice, because my executive functioning, verbal/listening/organisational skills were trash. I also might have ADHD and was just unable to mask due to being exhausted. Who knows? I would have benefitted from...

It’s cognitive dissonance but squared? Cubed?