Diary Day 108: PACE Trial and Yesterday’s Post About MECFS Spectrum

Yesterday I wrote a fairly long post about how establishing research exploring the MECFS spectrum could change the context that the PACE Trial is viewed in. 

Overnight I woke up and thought about it again. “There’s something much more simple and obvious,” I thought.

It’s to do with the oft-quoted adage in research, “correlation does not imply causation.” 

The PACE Trial’s efficacy rested on 3 things:

  1. The efficacy of the research design
  2. The efficacy of the research tools
  3. The efficacy of the statistical tools used to analyse the results.

IF MECFS is a spectrum disorder, one should expect that some people increase and some people decrease in their functioning over the lifetime of the disease.

All the PACE Trial has done is describe an effect that is, in a common-sense manner, expected of some patients with CFSME.

Oh….

Yes. Oh. 

The phrase “correlation is not causation” is really important in thinking about the PACE Trial if you also include the context of a spectrum disorder – this is something that does not exist and so did not exist in the PACE Trial research design.

What the PACE Trial did was say, using some fancy statistical analysis, that there was a correlation between the group of patients who did cognitive behavioural therapy and graded exercise therapy and a relief of symptoms. Badly, I might add.

That does not say that it CAUSED it though…

Because correlation is not causation! 

One of the major problems with the PACE Trial is the lack of context in other research. It’s coming, with new and more up to date methods being used, particularly within biological research.

Without that and other published research saying something different (or the same), the weight of the PACE Trial amongst the culture and context of published MECFS research is too great.

That gives it a dominant focus – a focus in a clear field – for clinical decision-makers in the NHS, as one example.

If, as I suggested yesterday, there was research carried out into defining the criteria along an MECFS spectrum and if, inherent in that, was an acknowledgement that MECFS patients can improve or decline along that spectrum, the PACE Trial could be viewed differently.**

The culture and context would be different. 

Copyright, Lindy. 2016.

** NB. I’ve tackled the issues with the research design previously in this blog. I join hundreds of people across the ME and research community who challenge many aspects of the research design and believe that it has inherent flaws.

This blog post is intentionally not tackling that – it’s trying to refocus wider.

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