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

[Cinders66]

I never said ME is FND, its not as it doesn’t include motor or sensory features that would qualify. I have said that i think evidence points to it being a functional somatic syndrome

Odd assertion isn’t it?

 

[Utsikt]

Odd assertion isn’t it?

I wonder which mechanisms Carson proposes that the functional somatic syndromes work through if not the nervous system.

 

[Mij]

Gosh almost as if it was a functional disorder…

 

[MrMagoo]

Isn't this criticism backwards? (Even if it were true, which if I have understood correctly it isn't.)

A high error rate in the diagnosis would lead to messy data which would weaken the patterns that the analysis uncovered.

But the analysis showed strong patterns.

If the data were messy but still showed strong patterns that would have meant that the patterns for a clean dataset would have been even stronger.

This criticism would have been relevant to make before the study, to warn the investigators about things they should improve to get a better result.

Seems like you’re trying to apply logic to nonsense!

 

[MrMagoo]

Odd assertion isn’t it?

But he didn’t say FND is ME, he said ME is like it’s a functional disorder, you see. He didn’t say which functional disorder.


Some of you are too tied to the idea of facts, and things “making sense” and Alan spouting BS! Classic Functional Making Sense Of Things Disorder.

 

[Yann04]

Gosh almost as if it was a functional disorder…

He really loves the “Anxiety and Depression Gotcha

 

[Jonathan Edwards]

A high error rate in the diagnosis would lead to messy data which would weaken the patterns that the analysis uncovered.

That is one argument - and valid.
But the other argument is also valid - that the 'ME/CFS/' cohort contained a significant number of people with some other problem with a genetic basis. The main argument against this is that the genes pulled out by DecodeME are not picked out in conditions likely to cause interference. The pain gene may be the same variant picked up in fibromyalgia but that would be a not unexpected overlap.

 

[Kiristar]

What about the heritabillity claim? "Heritability was 9.5% in the
@DecodeMEstudy . The heritability of depression is 40-50%, and 30-40% for anxiety disorders."

 

[Yann04]

What about the heritabillity claim? "Heritability was 9.5% in the
@DecodeMEstudy . The heritability of depression is 40-50%, and 30-40% for anxiety disorders."

You find similarly high rates in ME if you look at twin heritability studies.

And similarly modest ones to decodeME if you look at GWAS heritability in depression and anxiety.

Fundamentally he’s weaponising two very different ways to measure heritability. It’s like comparing degrees celcius to degrees farenheit.

 

[Hoopoe]

What would Carson make of the observation that the following things are typical of ME/CFS but not typical of depression?

Having to lie flat at least some of the time
Delayed worsening of symptoms in response to activities
Rest in a quiet, darkened room improves symptoms.
Can have significant functional impairment and symptoms with normal mood, for long periods of time.
PEM episodes follow a very different time pattern than depressive episodes.

The healthcare system is oriented towards detecting certain symptoms typical of depression, but has not been trained to look for certain problems typical of ME. When one only looks at things like fatigue, sleep issues, cognitive impairment ME/CFS does resemble depression, but when other things are considered it begins looking different.

 

[Sly Saint]

Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly

@Maat
one of mine

DISCUSSION: Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf South West Paediatric Club A Day with the MUPPETs (Medically Unexplained Physical, Psychological Symptoms) 15.30 Victor Neale Memorial Lecture: CFS/ME, what we know and research updates. Professor Esther Crawley, Bristol Children's Hospital...

forums.phoenixrising.me

 

[richie]

Carson in SMC.

Funny how he highlights depression when there were no hits on genes related to depression!

Some depressive co morbidity is to be expected in long term illness. Open question as to whether it worsens non depressive features. My bet is that any study of , say, MS. or sarcoid will cover numerous with depressive states.
Depressive co-morbids in the absence of genetic signatures for depression strengthens the argument against depression as initiating factor at least. The more the merrier. For a Prof of NPs I would think this would be an obvious immediate observation.
I think the question as to constitution of cohort is valid and I wonder whether I as a sarcoid sufferer with a fatigue state illness well established before sarcoid diagnosis have shown the ME signature or not.

 

[richie]

I wonder which mechanisms Carson proposes that the functional somatic syndromes work through if not the nervous system.

I wonder which mechanisms Carson proposes that the functional somatic syndromes work through if not the nervous system.

I think there is a difference between conceptualisation and what is going on bilogically in individuals. So, C might focus on stress handling and a few of Garner's Recovery crew might fit in there, but even the Recovery crew allow that the kind of biophysical aspects addressed by Alex Howard's clinic are varied , that treatment may be necessary and such aspects may be making people sick by direct mechanisms and as general stressors.
Why " ME is a FSD" rather than "FSD is found in ME"?

 

[Maat]

@Maat
one of mine

DISCUSSION: Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf South West Paediatric Club A Day with the MUPPETs (Medically Unexplained Physical, Psychological Symptoms) 15.30 Victor Neale Memorial Lecture: CFS/ME, what we know and research updates. Professor Esther Crawley, Bristol Children's Hospital...

forums.phoenixrising.me

Thanks @Sly Saint.

 

[Tilly]

Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.

Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.

 

[Tilly]

Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly

If you follow how the disease has been presented and then follow how FII was introduced you can see the protection it gave to the many Drs that treated young people and then saw a decline in their health and why we have no figures of harm.

 

[Maat]

Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.
View attachment 27796

Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,

There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child.

I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.

 

[Tilly]

Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,


I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.

I am very guilty of derailing as everything intertwines and your arguments are solid and sound they just don't work for many reasons. Happy to discuss further and show why it does not work on a different thread, suffice to say that there is no collection of data or oversight for a reason.