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More on actigraphy... (TMG #12) They really don't know what they're doing, do they. Update: At subsequent meeting (TMG #14) they are considering reintroducing actigraphy at 52 weeks - but no decision yet...

I found this on Actigraphy in TMG #11...

Even with the inclusion of FM pts, the results are still dire. I know that some with FM do find benefit from exercise, but am I right in thinking that it still needs to be approached really carefully, because overdoing it can result in a symptom flare?

I did post some stuff here: https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/page-3#post-37883

Abso-*&^%$-lutely! I can bore you endlessly on my explorations into CFQ as a change variable if you like... :bookworm:

I've asked on their FB page as well. [Update: No - they didn't submit anything]

That was a genuine question, by the way... (albeit a slightly barbed one!).

Well that would certainly explain why they are so reluctant to release the data on the step test, because the missing data will show this. But it says so much about their whole approach, and the red flags they have kept missing all the way through. At every point over the decades where they...

Sure. It's a bit of a long read, but very well explained here: https://www.newstatesman.com/2014/05/how-mistakes-can-save-lives In summary, those running the show can often get fixated on the wrong things, leading to mistakes that just get bigger and bigger. Involving all members of the team...

Sorry if this has been asked already, but did MEA submit their response to GETSET to The Lancet, or did they just not bother because of the conflict between the tiny word limit and Brandolini's Law?

Great summary. My only quibble though is that it might be more accurate to use the term "null results" rather than "negative results" - there's a clear but important distinction, statistically. I wouldn't want anyone to dismiss the whole text just on the basis of choice of wording.

I confess I'm really not on top of mediation analysis, and their explanation is very poor. But, from what I understand, the underlying assumptions are fairly crucial, and they seem to have made quite a lot of them that are unlikely to be true.

Nope nope nope nope nope nope! When your entire mediation analysis is based on a non-absolute measure (like CFQ), then there really is no point at all. It's not going to tell you anything. First rule of stats is to understand your variables, and to understand what they are doing, what they...

He does it all the time! Maybe he thought it was good to get The Lancet in the media spotlight (whatever the controversy).

Some things you find on the internet are wrong. I suspect there has been much conspiracy theorising and spinning done in the absense of evidence over the years. SW's lack of involvement in the trial was probably strategic - and to be fair, does maintain some independence. The Chair of the TSG...

I can answer that, cos I was there at the time! AW was published because RH thought he was doing the "right thing" by making sure that the paper didn't go elsewhere saying the "wrong thing". He made AW et al change the paper so that it stated that there was *no* association between MMR and "the...

*cough* I think it says more about the expectation that the more prestigious the institution and affiliations (and numbers of gongs on the byline), the more robust the research will be. I think The Lancet takes it way too much on trust that things will be done properly under those circumstances...

No. Janet Darbyshire was Director of the MRC CTU in 2004, I think. Wessely's CTU was at Kings.

Keith noted this from meeting 16: My question would be: Is there a safe way to do the step test in people with ME/CFS, given that it exercises to exhaustion? It's probably a reasonable objective measure because it doesn't allow the subject to pace themselves. I'm presuming the step test they...

I'd be tempted to write back and explain that to them! It either indicates that the authors don't really know what PEM is, or that they are being deliberately obfuscatory. What has always concerned me, though, is that The Lancet seem to have no mechanisms to ensure that authors have actually...