Criticisms of DecodeME - and responses to the criticisms

[Yann04]

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

It just sounds like jargon bombing to intimidate

 

[rvallee]

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...

There literally where frontpage headlines after PACE, as scantily evidenced as it gets, about how it means that exercise and happy thoughts are the cure for chronic fatigue. We were literally the only people criticizing what were blatantly fraudulent assertions not backed by any evidence, and while the claims have continued, the evidence has only gotten weaker since, much of it revealed to be fraudulent.

Anyone who accepted those claims, especially those who still do today, have no credibility at all in arguing against shoddy evidence. But they still do, which means the reasons for their poor judgment are still in effect. They are basically the people who bet the farm, OUR FARM, on magical beans. About the only retort to them should take the form of a simple: sit down and shut up.

 

[rvallee]

In a sane world it would be the other way around. You would rule out ME/CFS if you suspected depression.

Plus there is the loud and awkward fact that they, or anyone, cannot do that. If anyone, whether psychologists, psychiatrists or any other group of medical professionals could do that reliably, they already would have. The fact that they have not done that is all the proof that's needed that they cannot, as a matter of fact, do such a thing.

As an argument it's the same thing as requiring that any criminal investigation be first determined by the use of a psychic who will certify whether the accused did it, by reading their mind or whatever. Any psychic can do that as truly as any mental health professional can "rule out" depression in anyone, it's simply not a thing, a fake skill that no one has ever reliably applied.

What an absurd thing to argue still. No serious person would ever make such an argument, completely debunked as it is. All this controversy, the whole time, has been completely fake. It was always a bunch of people who had decided that all the evidence we had was not relevant, because all along the problem was this mystical creature named Glonzo doing cartoon-level shenanigans. You gotta keep looking for Glonzo with the patented Glonzo-detecting machine, which totally works as long as no one ever reliably assesses whether it does.

 

[Kiristar]

I hope someone (who isn't blocked) can challenge this backwards thinking.

 

[Mij]

I hope someone (who isn't blocked) can challenge this backwards thinking.

There are several pwME trying but it's not getting through to him.

Do you mean like and anxiety and depression all of which have considerably stronger evidence of genetic and immunologic contributions

 

[Kitty]

I hope someone (who isn't blocked) can challenge this backwards thinking.

They're not likely to make much of a dent, to be honest. Anyone behaving like this is either malicious or irretrievably stupid.

 

[Jonathan Edwards]

The answer to Carson is yes, like depression, a seriously disabling and sometimes fatal disease that you cannot talk yourself out of according to some idiot psychotherapist's recipe. Not a non-existent disease because there is no histology.

 

[Yann04]

There are several pwME trying but it's not getting through to him.

Do you mean like and anxiety and depression all of which have considerably stronger evidence of genetic and immunologic contributions

They love to compare to depression and anxiety as a “gotcha”. Carson did the same in reponse to the Beentjees study, he said “Studies of depression show similar results.”. David Jameson does it constantly. It’s one of their favourite ways to try and minimise. The thing they don’t realise is that the point goes the other way. Yes, depression and anxiety are in many cases biomedical illnesses, and the dominant ways they are treated by society and psychiatrists is often minimising and patient blaming.

Edit:
Reposting my reaction to Carson’s critique of the Beentjees paper

It’s weird. Because why is that a relevant thing to say if they see mental illness as physical. (As they so often claim), why do a contrast between “physical and mental” illness. When they always claim “the mind is a part of the body”. Whenever it’s convinient to them they employ mind body dualism and all of a sudden when they have to defend their ideas they revert back to a non-dualistic stance.

Why say that physical abnormalities are found in depression [thus it is implied finding them in ME/CFS is meaningless]. It seems depression is used as a shorthand for “not a physical illness”, which rests on popular conception more than any scientific data.

 

[Alinda]

their favourite ways to try and minimise. The thing they don’t realise is that the point goes the other way. Yes, depression and anxiety are in many cases biomedical illnesses, and the dominant ways they are treated by society and psychiatrists is often minimising and patient blaming

That's why I think the problem of how ME/CFS has been treated lies way deeper then not acknowledging the biomedical nature. It is more about the fact that anything subjective isn't taken serious, and that we are very far away from psychological conditions actually being seen.

Being depressed shouldn't be making anyone feel "dismissed", because it's a very serious problem.



I hope I am making sense, obviously me/cfs is very different from deppresion.

 

[MrMagoo]

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

These are the type of people who 100 years ago, would tie your left hand up and force you to write with your right hand if you were left-handed.

These people are starting to talk themselves into a corner.

 

[Kiristar]

The answer to Carson is yes, like depression, a seriously disabling and sometimes fatal disease that you cannot talk yourself out of according to some idiot psychotherapist's recipe. Not a non-existent disease because there is no histology.

This...

 

[Kiristar]

They're not likely to make much of a dent, to be honest. Anyone behaving like this is either malicious or irretrievably stupid.

I meant not for him, I know he's a lost cause, but for any happenstance or wavering readers.

 

[poetinsf]

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.

This is why I guard against watering down the definition of PEM. Delayed response to exertion may be everywhere, but not the catastrophic response to even imperceptibly small changes in minimal exertion that we see in severe/moderate cases. People with no understanding/experience with it could take post-exercise fatigue in other conditions, call it PEM and then minimize, or even deny existence of, PEM. They are what I call PEM deniers.

 

[Sean]

It is arguable that the lack of genes known to be linked to depression and anxiety is evidence in favour of any depression and anxiety being secondary reactive consequences of primary physiopathology, combined with huge secondary losses caused by both the disease itself, and serious mistreatment/abuse by medicine and broader society.

It would be a rare human indeed who did not show any signs of those secondary features in such extreme circumstances.

Not exactly a flattering possibility for the role of the likes of Carson, et al, in all this, is it.

 

[Maat]

@Maat nice to see you here again, was wondering how you were doing!

Hi @Tree , thanks, and you. Better, following a 6 month crash after working on my 1st complaint to the DHSC on publication of the consultation responses at the end of last year. No screen time at all. Returned to my baseline severe about a month ago, then the Final Delivery Plan dropped. So here I am for round 2

 

[Mij]

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

 

[V.R.T.]

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

What an absolutely empty headed statement. Time for me to hit ignore thread before steam starts coming out of my ears!

I wish he had the courage to say this to to the media when asked for comment instead of the usual weasel worded bollocks. But then they might be openly challenged on their views, and we couldnt have that.