Criticisms of DecodeME in the media - and responses to the criticisms

[MrMagoo]

Genuine question - who cares what COFFI say, apart from its members?

 

[Utsikt]

Genuine question - who cares what COFFI say, apart from its members?

I’ve seen COFFI and OCFN used to legitimise the BPS view, both by the members and others

 

[MrMagoo]

I’ve seen COFFI and OCFN used to legitimise the BPS view, both by the members and others

Are they in any way influential (beyond the usual self-referencing which that crowd does)

 

[Utsikt]

Are they in any way influential (beyond the usual self-referencing which that crowd does)

Very much so in Norway

 

[Peter T]

Are they in any way influential (beyond the usual self-referencing which that crowd does)

They are used together with the Oslo Consortium and Cochrane to try to create the idea that there is international consensus on the BPS approach to ME/CFS at the same time arguing thisis a radically new approach rather than a regurgitation of a decades old view point that has failed both scientifically and clinically,

 

[rvallee]

“11. We also know that recovery is possible, and question why recovered patients were not included in the genetic analysis. Maybe this is a question to be added in further research. It would be interesting to know whether genetic, environmental, or psychological factors influencing the occurrence, severity and chance of recovery.”

How would that even work? They complained about the validity of the diagnoses, saying they may or may not have ME/CFS, while demanding that people who don't fit the criteria be included. Completely unserious and incoherent.

 

[hinterland]

See discussion about this topic on the 'Criticisms of DecodeME in the media - and responses to the criticisms' thread
-------------

Response to DecodeME Preprint

"The DecodeME study is the largest of its kind to date, but its findings need careful interpretation". Read the full statement from COFFI researchers and consumers!

www.coffi-collaborative.com

On point 2 they’re confusing Chris Ponting’s comments on an earlier study he authored, looking at factors in the blood, with the DecodeME study. This just goes to show how disingenuous and self-serving their criticism is.

 

[rvallee]

They are just grasping a imaginary straws in a futile attempt to devalue any and all research that might be perceived as a threat against their hegemony.

The straws may be imaginary, but they still manage to bundle a lot of them together to form a very heavy cudgel to beat down the most vulnerable people they can find.

This disaster lasts only as long as the medical profession wants it to continue. Which it clearly does.