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Reminds me of this study: " The expression signature of very long non-coding RNA inmyalgic encephalomyelitis/chronic fatigue syndrome Chin‑An Yang1,2,3,4 , Sandra Bauer5, Yu‑Chen Ho3, Franziska Sotzny5, Jan‑Gowth Chang1,3,4† and Carmen Scheibenbogen5

I think it may help to consider what the actimetry reading are for "purpose". E.g. the a PACE type study could probably be evaluated using fairly basic kit - time spent upright - steps ---. The intervention didn't result in the hoped for benefit -- increasing activity, getting people back to...

There's a thread somewhere, on this site, relating to a study comparing a "time upright" monitoring device versus questionnaires --- so perhaps time off feet can be interpreted using a device like that? Or at least an analogous measurement made.

I created a new thread here re Actimetry: https://www.s4me.info/threads/actimetry-studies.20638/

Hi, there have been some suggestions that an Actimetry study would be useful in ME/CFS; perhaps we could use this thread to discuss.

Yes, an actimetry study might e.g. look at off the shelf equipment [you mentioned fitbit] and more specialised equipment - there's a review, on this website, of a study using a "time upright" sensor (more sophisticated). I wouldn't be surprised if even the basic kit (fitbit) was better at...

Fluge and Mella used actimetry in the rituximab trial. I assume that those reluctant to use actimetry may be running studies on a very limited budget [poor quality studies shouldn't be used for public policy] and those who know actimetry won't give the right i.e. +ve answer [PACE authors could...

You seem to have set out a very good suggestion i.e. respond to the request, for ideas for future research areas, by outlining a study on the use of actimetry in ME/CFS. I'd caution that the perfect should not be the enemy of the good. There's already studies showing that questionnaires...

Well done to all involved particularly @Andy In terms of suggestions @Jonathan Edwards has highlighted that he participated in an MRC group looking at possible research areas - GWAS came from that*. So I suggested that [MRC review group] as a possible approach. As you hinted Simon I did raise...

I wonder if Aptamers are a way of determining intracellular tryptophan concentrations - thereby testing whether intracellular levels are high (trap). Aptamers give very good (low) detection limits. Sure OMF have thought of that though i.e. since they have Maureen Hanson* and Jonas Berquist on...

I think the key thing, as @Michiel Tack has indicated, is to identify the role of IDO2 via a larger study e.g. Chris Ponting's GWAS study. The "70" number quoted looks impressive but could it be selection bias? If the role of IDO2 cannot be identified via GWAS (perhaps because OMF have selected...

I think the identification of IDO2 is well documented i.e. Robert Phair looked carefully at a small number of genomes* and identified that all had an IDO2 gene which was "defective" i.e. produced a form of the enzyme which wouldn't work/be expected to work properly. The odds of all having an...

Perhaps one for @Simon M. Would Chris Ponting's GWAS study establish whether the mutation of IDO2 you carry is relevant in terms of ME/CFS? E.g. if a copy that is non-functioning increases your chances of developing ME/CFS and/or a copy which produces functional IDO2 reduces your chances of...

Bhupesh mentions a publication in Nature last year and a technique - slum seq ? Anyone know what this is? We published a paper in [the journal] 'Nature' last year. This technology is called [slum seq ?]. It's basically - what we will do is, that we will understand the different pathways going...

Not directly relevant but Fluge and Mella published a paper suggesting impaired PDH - basically anything that needed to go through pyruvate was impaired (2015). Fluge and Mella suggested a signalling problem led to this outcome. Chris Armstrong's work also suggested that certain amino acids...

Yes - and if there is no evidence of anemia then you'd need to demonstrate that something else is sacrificed first like ---?

I need to re-read this. I agree with what you are saying e.g. I work in policy and the approach is often to set out the great things our Minister/Department officials have done - even if they're talking s--t --- I've a Westminster Parliamentary Question drafted [thanks @Trish ] and submitted to...

Just to agree with you - a relative, who was a psysio, told me that they had to contact Doctors regularly - why did you refer patient X what is the problem/why do you think they will benefit from psyio? Of course they knew that the real reason was that the Doctor wanted rid of patient X --- send...

I was wondering if this undermines the concept of having confidence in peer reviewed science but then I realised it wasn't a peer reviewed publication - it's just a talk at a conference.

I recall some comments by @Snow Leopard basically cortisol studies always find something. If I recall correctly the levels fluctuate naturally throughout the day (high in the morning low at bedtime?) so controlling for this daily cyclic change is difficult. I wonder if Simon Ponting's GWAS...