Criticisms of DecodeME in the media - and responses to the criticisms
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Utsikt
Senior Member (Voting Rights)
This is a blatant lie.
This is a blatant lie.
I wonder if COFFI could propose a way to recruit and verify both the diagnosis and subsequent recovery of a sufficiently large amount of recovered ME/CFS patients. This is like asking NASA why they don’t just teleport to Mars instead of using spaceships.
This completely misses the point about genes always being causal, and always pointing towards disease mechanisms. It also misses the point about the effect of treatments being largely independent of the effect size of the genes the treatments were based on.
It was based on self report of a diagnosis by an HCP and fulfilment of the diagnostic criteria based on questionnaires.
Hoopoe
Senior Member (Voting Rights)
COFFI doesn't understand GWAS. They are based on studying common SNPs, so inevitably, they will be present in healthy controls at very similar rates. The goal is not find to the genes with largest impact, but to identify the regions associated with the disease. This permits more precise study. That these common SNPs have little individual impact is irrelevant because drugs targeting the exact mechanisms can have very large impact.
The complete lack of integrity these people are showing is truly excessive. A million toilets being flushed will never produce this much poop mist.
MrMagoo
Senior Member (Voting Rights)
So at point7 it gets all Garnerish and doesn’t make sense, so I stopped reading
I stopped counting very early, and it went on and on.
Jonathan Edwards
Senior Member (Voting Rights)
Hello-o-o. The earth is flat! It really is!
Hello- o-o.
Hello- o-o.
MrMagoo
Senior Member (Voting Rights)
Stating that the earth may not be flat is raising public expectations that we are about to able to establish it is round. This is unfair as some members of the public may try to walk on a curve which isn’t there, and fall over, so please stop saying it. Or else.
Simon M
Senior Member (Voting Rights)
Okay, so this was a self-report of a healthcare professional diagnosis, supported by the DecodeME criteria, which required post-exertion malaise, a symptom pretty specific for ME/CFS. So, a fairly well defined cohort. But had it been varied, that would make it more likely to find nothing, not to find false positives. They don't seem to have a very good grasp of GWAS or wider issues.
DecodeME found 63% had self-reported infectious onset. Other studies find a higher rate, but DecodeME used a better question, allowing "don't know" as an answer.
And they are absolutely right that many fatiguing conditions have different triggers and causes. A sizable GP practice study by Simon W in the 90s looked at people with fatigue and askedthem what they thought the cause was. In most cases they cited psychosocial causes, such a stress.
But DecodeME is studying ME/CFS. I'm not sure they realise there's a difference between ME/CFS and all fatiguing conditions.
I know, so much of what they say doesn't make sense, but the misunderstandings they demonstrate here seem fundamental.
COFFI said:
Are they referring to something else when they say "small minority"? 63% is clearly not a minority.
They refer to "documented" infection. Is there data on what proportion of these infections in DecodeME were "documented"?
Kitty
Senior Member (Voting Rights)
It's not clear what it even means.
Most mild infections aren't recorded in people's medical notes, and even if participants consulted a doctor at the time, in most cases the GP wouldn't have been able to identify the infection with much precision.
So why would a GP note saying "respiratory infection" or "GI upset" somehow have more value than a participant saying they'd been ill before onset? Neither are proof.
Peter T
Senior Member (Voting Rights)
“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.”
The Coffi members have made absolutely no attempt to distinguish between people who are reported as recovered from ME/CFS and those that do not, but are happy to use their purported existence to justify providing their preferred psychological and behavioural interventions to everyone with ME/CFS, despite the high levels of reported harm from these interventions. Indeed they seem to have actively avoided recording harms, rather asserting harms do not happen when specialists clinicians provide their input, despite extensive survey evidence to the contrary.
It strikes me as rank hypocrisy to criticise DecodeME for not doing what they have failed to address in any way for some decades. If recovery is so common why do the studies they rely on provide no object evidence for improvement, rather demonstrate that subject reports of improvement are transient.
The Coffi members have made absolutely no attempt to distinguish between people who are reported as recovered from ME/CFS and those that do not, but are happy to use their purported existence to justify providing their preferred psychological and behavioural interventions to everyone with ME/CFS, despite the high levels of reported harm from these interventions. Indeed they seem to have actively avoided recording harms, rather asserting harms do not happen when specialists clinicians provide their input, despite extensive survey evidence to the contrary.
It strikes me as rank hypocrisy to criticise DecodeME for not doing what they have failed to address in any way for some decades. If recovery is so common why do the studies they rely on provide no object evidence for improvement, rather demonstrate that subject reports of improvement are transient.
Simon M
Senior Member (Voting Rights)
Participants were asked if the infection for either infectious mononucleosis (glandular fever) or Covid had been confirmed by a test. For mono, this would be a lab test, which is often done in severe cases. I can't remember if the Covid question includes the option includes a home test.
The questionnaire didn't ask if people have been tested for any other infection – because the vast majority of infections are not routinely tested for
Kitty
Senior Member (Voting Rights)
That might be part of COFFI's problem.
It'll be interesting to see what happens over the next couple of years with some of these self-appointed "experts".
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?
At least the Norwegian members of COFFI argue for fatigue being a spectrum, with CFS on the extreme end. So I'd say they don't see a difference between ME and other fatigue.
That seems a bit anaemic from the BPS people.
"just maybe you might recover"
"not with that attitude"