Criticisms of DecodeME - and responses to the criticisms

“More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate. The National Institute of Health in the US has suggested diagnostic error rates of around one third. Whilst much is made of patients having post exertional malaise it should be remembered that this does not have a definition, and it is found across multiple disorders not just ME. Finally, there were significant co-morbidities within the sample with disorders known to have a genetic contribution like depression, chronic pain and irritable bowel syndrome.
Click to expand...
Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!
 
Just scanning through the SMC reactions that MEA have linked to on their fb. https://www.sciencemediacentre.org/...EV1pUPHIhxomm9Ylfw_aem_YLBFgUW0lrQfRJimzqsZcQ

The following doesn't feel right to put it on this thread, given the MEAs one-liner seems apt "Science Media Centre gathers some expert and non expert opinion on the DecodeME results"

But surely quote of the day, for hypocrisy has to go to the following from Alan Carson:

More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate.
Click to expand...

As part of his 'if you throw enough random things at the wall to hope something might stick' approach
 
“More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate.

Are they omitting the FACT that it was saliva that was tested to get the results of the Decode study? As I see it the questionnaire is important but not as important that these findings were due to the analysis of our saliva not the questionnaire. Maybe that fact isn't convenient for them to acknowledge as it makes their conclusions meaningless in my opinion.

Also I believe that many samples weren't accepted or rather people weren't asked for samples if the questionnaires didn't meet the strict criteria for this study but maybe that is another fact they chose to ignore preferring their ignorant asumptions as usual.
 
Interesting to see that Carson really doesn't understand at all what has been going on.
What DecodeME shows is that if you take a group of people defined by answering a questionnaire (and a medical opinion along the same lines, but we can even forget that) about a cluster of symptoms which some professionals think might be based on a common process, they turn out to have an identifiable genetic signature that demonstrates that the questionnaire is identifying a real, communal, 'something wrong' that until now has been purely a hunch.

The questionnaires cannot have a definable 'error rate' if nobody knew what, if anything, wrong the people had in common. Presumably Carson is assuming that they had a functional disorder and that the questionnaire might get that wrong?
 
Jonathan Edwards said:
What DecodeME shows is that if you take a group of people defined by answering a questionnaire (and a medical opinion along the same lines, but we can even forget that) about a cluster of symptoms which some professionals think might be based on a common process, they turn out to have an identifiable genetic signature that demonstrates that the questionnaire is identifying a real, communal, 'something wrong' that until now has been purely a hunch.
Click to expand...
I do think that this is something important that is being missed by a lot of people at the moment; understandably so with all the excitement focused on the genetic results. Perhaps we need to put more emphasis on it in our communications.
 
Jonathan Edwards said:
Then there is the criticism from Andrew Millar, one time head of a Biotech concern, who thinks genes may not be causal and that histologically normal brains exclude 'encephalomyelitis' (which is largely true but completely non-sequitur).
Click to expand...
This the letter in question: https://www.thetimes.com/comment/le...etters-supreme-court-gender-ruling-d270xjch2m

Sir, Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed. Histopathology pre-dates genetic testing in medical research and remains a diagnostic linchpin. No study has shown microscopic evidence of diseased muscles (myalgic) or the central nervous system (encephalomyelitis). The finding of clusters of genes associated with ME does not prove they are part of a disease pathway, or what that pathway is. Professor Ponting is to be congratulated and encouraged but he has plenty more research to do to demonstrate the disease process.
Andrew Millar
Wallingford, Oxon
Click to expand...

Also shared on 'DecodeME in the media'
thread: https://www.s4me.info/threads/decodeme-in-the-media.45467/post-631872

[Edited to correct link to thread]
 
Last edited:
Jonathan Edwards said:
Interesting to see that Carson really doesn't understand at all what has been going on.
What DecodeME shows is that if you take a group of people defined by answering a questionnaire (and a medical opinion along the same lines, but we can even forget that) about a cluster of symptoms which some professionals think might be based on a common process, they turn out to have an identifiable genetic signature that demonstrates that the questionnaire is identifying a real, communal, 'something wrong' that until now has been purely a hunch.
Click to expand...
Exactly. The results validate the selection process!
 
Robert 1973 said:
This the letter in question: https://www.thetimes.com/comment/le...etters-supreme-court-gender-ruling-d270xjch2m



Also shared on the DecodeME media coverage thread.
Click to expand...
This couching is I think a faux pas. It just makes him look sexist/misogynistic himself. And hasn't the Wüst study found objective muscle damage? And arguing about the name is not the point and looks petty.

Eta one of the almost revolutionary things about Decode was shock-horror listening to and believing ME patient reports, rather than casting them as false or unreliable witnesses (as Carson also attempts) this is not a study weakness but to be commended. Not all disease processes can be seen with a microscope.

I do hope someone manages to writes a pithy reply to this.
 
Last edited:
Kiristar said:
And hasn't the Wüst study found objective muscle damage?
Click to expand...
If I remember correctly, it was without adequate controls in terms of both the degree of inactivity and the duration of the inactivity.

There might be some comparable data from studies on paralysed people, but I don’t think the comparison has been made yet.
 
Alan Carson on X:

As far as i m aware no randomised trial has ever shown pacing to be superior to graded exercise

‘Bottom up’ incoming signals which be of our internal state ‘interoception’ our movement in the world ‘proprioceptio’ our our awareness if the external world ‘exteroception’. Our prior expection and attentional ‘spitlight’ has a significant preconscious modifying effect

So if a patients says i feel fatigue that will be a combination of those fsctors. The top down influences will be a combination of genetics and the totality of life experience and in some cases specific disease distortions- every experience will be unique between subjects 3/n

Of course people will be right on occasions sometimes because they’re correct and sometimes liked a stopoed clock by chance. BUT critically that gives ideas to test it is not the answer for the latter we need proper trials

But also temporally within a subject. So if a patient says i feel fatigue yes i believe them, if they say because i feel fatigue i know this is mitochondrial dysfunction and treatment a works and b doesn’t, i have this unique insight, i say impossible 4/n

 
Mij said:
So if a patient says i feel fatigue yes i believe them, if they say because i feel fatigue i know this is mitochondrial dysfunction and treatment a works and b doesn’t, i have this unique insight, i say impossible 4/n
Click to expand...
Carson should take his own advice - he doesn’t have unique insight either.

So maybe we should at least trust the patients when they say that X doesn’t work for them. Their reasoning for why might be wrong, but their conclusion can still be right, because the reasoning is an after the fact attempt at explaining the perceived effect.
 
Utsikt said:
Carson should take his own advice - he doesn’t have unique insight either.

So maybe we should at least trust the patients when they say that X doesn’t work for them. Their reasoning for why might be wrong, but their conclusion can still be right, because the reasoning is an after the fact attempt at explaining the perceived effect.
Click to expand...

Alan Carson.jpg

Pretty hard to challenge him on his views.
 
Carson seems to believe fatigue can be treated by modifying expectations.

When I read that, I feel misunderstood because the experience of the illness includes the strong experience of POWERLESSNESS of positive expectations, attitudes, thinking, and the difficulty predicting things precisely, and the POWERLESSNESS to overcome fatigue despite extreme effort and motivation. More effort will just lead to worse fatigue (over time). That's why I have learned to not struggle too much... not because I'm lacking the ability to be positive and motivated, but because I know it will not work. The positivity is POWERLESS and leads to futile struggles that end in crashes that make things worse.

Of course, Carson would interpret my words as evidence as consistent with the idea that expectations and beliefs are causing the symptoms, instead of a description of the illness dynamics.

He is probably confusing "getting patients to talk about fatigue differently in a medical setting or filling out questionnaires differently" with "successfully treating fatigue".

He is an academic in an ivory tower that is clueless about the real world. It's like listening to a person that is utterly convinced that patients have never tried positive expectations and seen what effect that has. That suggests he has no contact with ME/CFS patients to whom he could listen and learn from.
 
Last edited:
Hoopoe said:
Carson seems to believe fatigue can be treated by modifying expectations.

When I read that, I feel misunderstood because the experience of the illness includes the strong experience of POWERLESSNESS of positive expectations, attitudes, thinking, and the difficulty predicting things precisely, and the POWERLESSNESS to overcome fatigue despite extreme effort and motivation. More effort will just lead to worse fatigue (over time). That's why I have learned to not struggle too much... not because I'm lacking the ability to be positive and motivated, but because I know it will not work. The positivity is POWERLESS and leads to futile struggles that end in crashes that make things worse.

It's bordering on insane to suggest that fatigue can be treated by modifying expectations. He is probably confusing "getting patients to talk about fatigue differently in a medical setting or filling out questionnaires differently" with "successfully treating fatigue".

He is an academic in an ivory tower that is clueless about the real world.
Click to expand...
It also flies in the face of what the neuroscience actually tells us, because fatigue isn’t based on a predictive system at all.
 
Mij said:
‘Bottom up’ incoming signals which be of our internal state ‘interoception’ our movement in the world ‘proprioceptio’ our our awareness if the external world ‘exteroception’. Our prior expection and attentional ‘spitlight’ has a significant preconscious modifying effect
Click to expand...

The dumbness goes very deep. As we have pointed out, this theory predicts the opposite of what Carson is claiming.
 
You must log in or register to reply here.
Back
Top Bottom