Criticisms of DecodeME - and responses to the criticisms

[Eleanor]

Really good letter @Robert 1973

Andrew Millar: "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."

Funny how appropriate scepticism of scantily evidenced claims didn't prevent numerous behaviouralists' research getting funded...

 

[Jonathan Edwards]

"The finding of clusters of genes associated with ME does not prove they are part of a disease pathway"

Wrong.
They must be, because they are by definition antecedents.
Which genes and what they do is another matter but this guy is from the age of diplodocus.
The fact that histopathology precedes genetics is no more relevant than pigeon post preceding WIFI.

He is only talking to himself. But he may confuse others.

 

[Jonathan Edwards]

Andrew Millar seems to be this guy:

New venture for dissident

WHISTLEBLOWER Andy Millar, who was sacked by British Biotech, is to be chief executive of a start-up company, Oxford Gene Technology.

www.oxfordmail.co.uk

A big cheese in British Biotech in 1998 who set up an Oxford Biotech company but does not seem to have been heard of since 1999.

 

[John Mac]

Andrew Millar seems to be this guy:

New venture for dissident

WHISTLEBLOWER Andy Millar, who was sacked by British Biotech, is to be chief executive of a start-up company, Oxford Gene Technology.

www.oxfordmail.co.uk

A big cheese in British Biotech in 1998 who set up an Oxford Biotech company but does not seem to have been heard of since 1999.

Perhaps somebody's friend who has been asked for a favour?

 

[Jonathan Edwards]

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]

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).

 

[Andy]

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.

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.

 

[Robert 1973]

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).

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

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] Mod note: now moved to this thread

 

[Robert 1973]

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.

Exactly. The results validate the selection process!

 

[Kiristar]

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.

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.

 

[Utsikt]

And hasn't the Wüst study found objective muscle damage?

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.

 

[Jonathan Edwards]

And hasn't the Wüst study found objective muscle damage?

Wüst showed us a sample of damage muscle. There are big problems with extending that to any general application to ME/CFS. But there was never a need to show any muscle histopathology to explain myalgia.

 

[Mij]

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

 

[Utsikt]

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

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.

 

[Yann04]

Once again weaponising a reductionist view by simplifying everything to fatigue. It’s the only way they can get away with such dismissals.

 

[Mij]

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.

Pretty hard to challenge him on his views.

 

[Hoopoe]

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.

 

[Utsikt]

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.

It also flies in the face of what the neuroscience actually tells us, because fatigue isn’t based on a predictive system at all.

 

[Jonathan Edwards]

‘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

The dumbness goes very deep. As we have pointed out, this theory predicts the opposite of what Carson is claiming.

 

[Turtle]

After DecodeME Carson and peers are yesterdays's news, used as today's bin liner.
Whatever ..... ception he uses, the only thing that's left is his, and their deception.
Shamelessly hurting us all, knowingly.