UK CMRC 2018 Conference held September 19 & 20 at Bristol

CMRC Patient Advisory Group member @PhilM64

I think this is @phil_in_bristol

 

Yes, it is a pity twitter oversimplifies so much but some important points made.
As Simon says, if subjective reports and objective measures do not match it does not necessarily mean the objective measure is the wrong one.

This again emphasises to me the importance of having a measure that requires BOTH subjective improvement and some objective evidence that the subjective improvement is grounded in something that makes sense. That might be an explanatory mechanism or it might be an expected outcome correlate like more activity. There are all sorts of ways to create better measures. Perhaps it is time to set up a working group to address that.

 

Where do you think one should be set up?

 

It doesn't really matter where. Probably the best idea would be to gather together a few like minded people and then see if more like minded people want to join in. The landscape has changed at CMRC sufficiently for it to be possible to do that without appearing to be in conflict with CMRC, which makes things easier.

 

I think this is very important and urgently needs doing.

 

I wasn't scheduled to speak. Chris Ponting suggested I say a few words at an open slot at the end of the day, so I took the opportunity to do so. My point was the same as always--PACE is scientific misconduct, it's shocking that the UK academic and medical establishment has accepted and defended it, and there needs to be an investigation into the whole thing. I also pointed out that I was not able to attend last year because I had been falsely accused by the previous CMRC vice-char of libel and was engaged in a war of words with the organization over the issue, and that I was pleased that I was welcome to attend this year.

 

For some reason I've got a bad association with the Lind Alliance. I don't know why - maybe they did some work with another condition that I thought was poor, and seemed to move things in a more biopsychosocial direction?

Great to have Tuller slip in a bit of PACE criticism at the CMRC! Thanks to Ponting.

 

The only exposure I've had to it is in the context of a Canadian FM researcher who was funded to do the JLA process, but changed it to suit her own agenda, basically saying FM patients were malingerers to which insurers should not pay disability benefits.

 

May I just propose this headline to the SMC for their reported 1300 media contacts?



Western Wordslinger From Those Rebellious Colonies Stands His Ground Again

Karma Is Running over Our Dogma

(However, it might be a good thing to keep be in mind that if we get rid of all the snake oil salesmen and there is no more snake oil... we could have a big problem with squeaky snakes.)

 

This is true, but I think it’s important to emphasise and make a distinction between

1) quality of test method (I.e design of questionnaire and the context in which it is filled in) and
2) validation that the method used is likely to measure something useful and meaningful in the first place and
3) having a means to double check back against a relevant, in-experiment quantitative reference to check that you can interpret the results with context and make a recommendation

In my field (food) you have both subjective and quantitative options in something like sensory analysis where there is a lot of bias to deal with due to the subjective nature of eating and enjoying food.

So if you are assessing 3 recipe versions of a dessert you could

Have a meeting of 24 people where they all taste the products together presented on pretty plates and discuss the product differences before filling in a marks out of 10 (using a scale you just made up e.g. really yucky to yummy) for how much they like it (bullshit result)

Or

They could all be separated into light-controlled booths, given randomly 3 figure coded samples (to avoid coding bias) in identical pots, presented in 6 different order of presentation (to avoid presentation order bias and flavour/smell carry over) and then be asked to fill in a carefully constructed series of questions to probe what they liked and disliked about the product, followed by how much they liked the product overall. This would use internationally accepted scales that had been previously rigorously tested for bias in both the phrasing of the scale sections and the number of points on the scale (e/g. Always using an odd number like 1-9 or 1-7 instead of 1-10 which has known problems with skewing data towards the top end and with end point avoidance).

Your results are still qualitative and subjective but they are better than the full bias method.

You can then compare the results vs the quantitative reference of the quantities of ingredients used in the recipes to give meaning/context and a basis for recommendation (e.g. too sweet so reduce the sugar or up the acidity to boost flavour etc etc)

The Chalder example ignores all 3 key steps to eliminate bias in the design but also adds to this in the interpretation of the results as well making the whole thing just a nonsense.

 

I don't suppose that particular char lady was in the audience was she?

 

I can't imagine for one moment that she was, imagine all the biomedical talk she would have to listen to, in direct competition to her ideological stance on ME.

 

As far as I can tell, her name was not mentioned publicly by anyone. It almost feels verboten--lots of sensitivities about it, it would seem. Her absence is palpable--she is sort of present in her absence, if that makes sense. But it has been a refreshingly BPS-free zone so far.

 

creepy

 

AfME's tweets have started up again: https://twitter.com/actionforme?ref_src=twsrc^google|twcamp^serp|twgr^author

First talk is a Professor Sudlow talking about the UK Biobank (as opposed to the UK ME/CFS Biobank).

 

@dave30th just wondered if you had managed to get any of attendees to sign the Lancet letter?

 

I thought exactly the same @Adrian.

Turns out, that it just sounds similar: Linbury Trust https://me-pedia.org/wiki/SMILE_trial

"Funding[edit | edit source]
The initial budget was £164,000 funded by the Linbury Trust and the Ashden Trust.[10]"

Presumably the rest of the cost was borne by taxpayers via her NIHR grants.