Blog: johnthejack, Toxic Numbers

Andy

Retired committee member
The article claims that Professor Sharpe is not alone and that ‘there has been a decline in the number of new CFS/ME treatment trials being launched’. It quotes evidence from clinicaltrials.gov:

From 2010 to 2014, 33 such trials started. From 2015 until the present, the figure dropped to around 20.

I was surprised by that figure as research couple of years ago found an increase in the number of papers published on the illness. Along with the trend in medical science generally, more work was being done.
https://johnthejack.com/2019/03/16/toxic-numbers/
 
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I don't quite follow this:
johnthejack said:
There is a further point. The article says that he and others are being driven out of research because some patients do not like their approach as it ‘suggests their illness is psychological’. No one researching ME as a pathological illness has made such complaints. It would be expected then that trials taking this behavioural approach should show a decline and that others, looking at possible drug treatments, for example, would be unaffected. As the table shows, though, there is no such trend.

From the table, in the 5 years 2010 to 2014, it shows 32 trials, 7 of which were behavioural, meaning 25 non-behavioural.

From the table, in the 4.25 years 2015 to date, it shows 23 trials, 2 of which were behavioural, meaning 21 non-behavioural.

So given there is still 9 months of 2019 to go, it suggests to me that non-behavioural will have likely dropped very little, if at all. And that behavioural research has indeed dropped off, the far more likely reason being that the penny is genuinely dropping that it is a scientific dead end, as PACE effectively proved.
 
The idea of using this metric seemed really bizarre to me. Who cares how many poorly designed trials of ineffective treatments there are?

Thanks to John for providing the figures. It makes their value seem even more questionable.
 
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I don't quite follow this:


From the table, in the 5 years 2010 to 2014, it shows 32 trials, 7 of which were behavioural, meaning 25 non-behavioural.

From the table, in the 4.25 years 2015 to date, it shows 23 trials, 2 of which were behavioural, meaning 21 non-behavioural.

So given there is still 9 months of 2019 to go, it suggests to me that non-behavioural will have likely dropped very little, if at all. And that behavioural research has indeed dropped off, the far more likely reason being that the penny is genuinely dropping that it is a scientific dead end, as PACE effectively proved.

It's a fair point and perhaps I could have said a little more on that. I have now added something to the post:

*It has been suggested that there is in fact a discernible trend in the lower numbers of behavioural trials, but there is no way of knowing whether there is a trend or whether there was a slight blip in 2009 or whether it is possible to know anything at all from such small numbers. It could be argued, for example, that one third of all clinical trials for 'CFS/ME' in 2018 were behavioural.

The same point about the reliability of the search applies, since neither PACE nor SMILE are listed.

And even if there were some sort of trend, there is no way of knowing the impact, for example, of the IOM report and the change in focus by the NIH.
 
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