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:laugh::ill::banghead:

Anyone fancy working on a letter to BACME spelling out all the problems with their materials and asking them to update them? Not me at the moment. I'm all out of energy for flogging dead horses.

The video is a talk Katie Johnstone gave to the Local ME network. Edit: correction - the ME Local Network. I started trying to watch this but the sound quality and my elderly hearing are such that I couldn't follow what she was saying, so I read the YouTube transcript. She picks up key point...

No.

Thanks for the notes, Hutan. I watched it too but rather inattentively. I was shocked to hear at the end Walitt recommending brain training even though he admits there's no research evidence.

Our aim here is to enable open discussion of any published science without fear or favour. That way we hope to help each other to understand how research works and whether published results and claims are well founded. It's not about whether we respect individual researchers or not, it’s about...

The sample sizes, especially once they are split into male and female subsets, are so small it's hard to know what to make of these results. I hope they will repeat with much larger cohorts. I wonder whether they could look at the effect of female hormones, and specifically where in the...

I think a model or set of models also has to account for those of us whose problems are more with physical rather than cognitive symptoms, or whose cognitive symptoms are noticeable mainly when the effects of cognitive fatiguability kick in, or when in PEM.

I completely agree with you, @tuha. Throughout my ME/CFS I have repeatedly pushed myself to and through exhaustion, pain, nausea etc etc., and crashed often as a result, especially while I was still working. They have no idea with their effort preference nonsense.

Given that several studies have found between sex biological differences in ME/CFS, I think it's possible we may need two separate models.

Given that anyone with mild ME can become severe very quickly, and, perhaps more rarely, the reverse can happen, I agree the model needs to encompass all severity levels, and the fluctuations most of us experience, I think it's important that the model needs to explain all severity levels...

The key for me is it must provide a biological explanation of delayed PEM.

I have had a reply: I am considering a response. I probably don't have the energy to pursue this further. At least the subject has been raised and put on their agenda to consider for future conferences. Edit: I have replied thus:

Are these the same article with a different title?

I ran out of energy to follow it half way through, but left it running most of the way through and picked up on a few bits and pieces. I gathered from the diagram with several columns that was too small to read that they had an overarching hypothesis and the presentations were ordered to create...

So basically they are saying it's all OK because they believe it's OK, and their invention of new terminology was OK because they liked the term effort preference. I thought they were supposed to be doing science, not making stuff up and building their whole report of the study around a...

The response is posted on the letters thread. No apology or any other communication from Sarah Tyson.

The example he gave of Parkinson's disease and EEFRT he said gave similar results to ME/CFS, but when given dopamine the positions were reversed, with the PD group choosing more of the hard tasks than HC. Surely that indicates increases ability to perform a fine motor task with dopamine in PD...

I agree the defence of EEFRT was very weak. Do we know why they included it in the study?

I wish I could have manage to write down the effort preference section and the answers to questions about it. It was notable that even when answering questions about it, they were reading out prepared answers. Dis I hear correctly that Walitt attributed the preference partly to unconscious...