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

We also know that recovery is possible,​

They know no such thing. They merely assert it.

Kitty said:
Will some of them see which way the wind is blowing and take pragmatic action? Will they go quiet on ME/CFS and just look for other soft targets to exploit?
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Yup. That is exactly what they will do, indeed are already doing via FND, rather successfully thus far unfortunately.

And they will keep right on trying to foist this garbage onto sick vulnerable innocent patients until the rest of the world stops them.
 
Kitty said:
Will some of them see which way the wind is blowing and take pragmatic action? Will they go quiet on ME/CFS and just look for other soft targets to exploit?
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They seem to be assigning a dx of FND to those with an exisiting diagnosis of MECFS or just going straight to FND and ignoring the MECFS symptoms altogether. It's just backdoor CBT and GET.
 
BrokenBeaktheBrave said:
They seem to be assigning a dx of FND to those with an exisiting diagnosis of MECFS or just going straight to FND and ignoring the MECFS symptoms altogether. It's just backdoor CBT and GET.
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That is exactly what they are doing, and have been for some time.

The rest of medicine, and the broader governance structure, need to wake the hell up to it and stop them.
 
The recovery point creates an interesting opportunity - DecodeME *should* keep track of those who recover in the future and examine reported experiences of those people. DecodeME has a very large, relatively unbiased cohort that could be great for following people over time.
 
Snow Leopard said:
The recovery point creates an interesting opportunity - DecodeME *should* keep track of those who recover in the future and examine reported experiences of those people. DecodeME has a very large, relatively unbiased cohort that could be great for following people over time.
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The much reduced DecodeME team have no capacity or funding to do so, however the cohort is obviously there if some other research team with funding wished to recruit participants from it for such a project.
 
Snow Leopard said:
I think it is worth pushing that idea out there for those who have funding...
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We've discussed this idea and possible problems for it on a decodeme follow-up thread: https://www.s4me.info/threads/what-...e-using-the-decodeme-cohort.45191/post-625666, https://www.s4me.info/threads/what-...e-using-the-decodeme-cohort.45191/post-625965. I think it is worthwhile pursuing, whoever ends up doing it. Maybe COFFI people were reading that thread?

I wonder what the plan with SequenceME will be. They might recontact participants but I'm unsure whether they also re-plan to assess "ME/CFS status" (whether alternative diagnosis have come up or whether the symptoms still match the criteria), but if SequenceME does plan to assess "ME/CFS status" then you'd already have a cohort of non-recovered people after a certain time, which could already be interesting.
 
EndME said:
I wonder what the plan with SequenceME will be. They might recontact participants but I'm unsure whether they also re-plan to assess "ME/CFS status" (whether alternative diagnosis have come up or whether the symptoms still match the criteria), but if SequenceME does plan to assess "ME/CFS status" then you'd already have a cohort of non-recovered people after a certain time, which could already be interesting.
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No, SequenceME doesn't plan to re-assess ME/CFS status of the samples it would be using that were collected as part of DecodeME.
 
MrMagoo said:
Are they in any way influential (beyond the usual self-referencing which that crowd does)
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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,
 
COFFI said:
“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.”
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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.
 
Dolphin said:
See discussion about this topic on the 'Criticisms of DecodeME in the media - and responses to the criticisms' thread
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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 www.coffi-collaborative.com
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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.
 
Utsikt said:
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.
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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.
 
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