Criticisms of DecodeME - and responses to the criticisms

[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.

 

[Jonathan Edwards]

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

And yet he uses the (backwards) explanation for FND to support his case.

 

[Sean]

I never said ME is FND,​

What about CFS? Is that FND?

Just so we are clear.

 

[Robert 1973]

My (slightly edited) letter in The Times today, and one from Andrew Millar: https://www.thetimes.com/comment/le...letters-supreme-court-gender-ruling-d270xjch2

I’ve just noticed that the editor changed ME/CFS to ME in my letter. I understand the need for consistency but I would have preferred them to keep it as ME/CFS.

For comparison, here is the letter as published and the letter I sent.

Published:

Sir, As someone who has been severely disabled by ME for more than 30 years, I was delighted to read about the results of DecodeME. However, Chris Ponting is right to express anger that this type of genetic analysis was not done 15 years ago. As you reported (News, Jul 22), after a three-year delay, the Department of Health and Social Care has published its dismal delivery plan for ME, but it included no commitment to funding and no pathway to providing adequate services. For decades, governments have told us they are committed to helping people with ME, but all the evidence suggests the opposite.
DecodeME has given me and millions of others hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, apologise to patients, and act to ensure that quality scientific research is sharply increased and patients are given access to appropriate physician-led services.
Robert Saunders
Balcombe, W Sussex

Submitted:

Dear Editor,

As someone who has been severely disabled by ME/CFS for more than 30 years, since I was 19 years old, I was delighted to read about the results of DecodeME, the ME/CFS genetics study (report: https://www.thetimes.com/article/5118f374-a88c-44b4-8fe8-79818177e977). However, the lead author, Prof Chris Ponting, is right to express anger that this type of genetic analysis was not done 15 years ago, as it has been “for every other major disease”.

As you reported, after a 3 year delay, the DHSC recently published its dismal Final Delivery Plan for ME/CFS, which included no commitment to funding and no pathway to providing adequate services for people with ME/CFS (report: https://www.thetimes.com/article/e4a60398-273e-4f07-9942-853392111148). For decades governments and the MRC have told us they are committed to helping people with ME/CFS, and yet all the evidence suggests the opposite, as patients continue to be be systematically neglected and mistreated.

DecodeME has given me and millions of other patients desperately needed hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, to apologise to patients, and to act to ensure that high-quality scientific research is dramatically increased and patients are given access to appropriate physician-led services.

Yours faithfully,

Robert Saunders

I’m somewhat puzzled why they changed “which” to “but”. Given that I describe the Delivery Plan as dismal, “but” is the wrong preposition IMO, as there is no contrast.

Otherwise I was happy enough with the edits given the need to reduce the length, although I wouldn’t have used the word sharply.

Another point of interest is that I always write “Dear Editor” but The Times always publish all letters as “Sir”. I wonder how long it will be before this convention changes. Surely it’s only a matter of time.

 

[Maat]

I never said ME is FND,​

What about CFS? Is that FND?

Just so we are clear.

and just to add belt and braces to it, this from Table 1 of the RCPCH ‘Fabricated or Induced Illness by Carers: A practical guide for paediatricians’ – last published in 2009. Updated February 2021 - is wrong then?

Medically Unexplained Symptoms (MUS) Definition

The child’s symptoms, of which the child complains and which are genuinely experienced, are not fully explained by any known pathology but with likely underlying factors in the child (usually of a psychosocial nature), and the parents acknowledge this to be the case. The health professionals and parents work collaboratively to achieve evidence-based therapeutic work in the best interests of the child or young person.

MUS can also be described as ‘functional disorders’ and are abnormal bodily sensations which cause pain and disability by affecting the normal functioning of the body. Synonyms Non-organic symptoms, Functional illness, Psychosomatic symptoms

 

[MrMagoo]

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

He’s got functional spouting bs syndrome. Incurable.