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

Tree said:
@Maat nice to see you here again, was wondering how you were doing!
Click to expand...
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 :banghead:
 
Mij said:
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
Click to expand...

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.
 
Robert 1973 said:
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
Click to expand...

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
Click to expand...

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
Click to expand...

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.
 
Robert 1973 said:
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.
Click to expand...

Wonder if it might be worth a brief email, if you have the energy? Just to say that the naming convention has changed, and it's be great if they could amend their style guide?

Might not work, but it's possible they changed it because they genuinely don't realise. To be fair, there's probably no reason they should know.
 
One reason they have to argue this is that all their awful questionnaires keep identifying symptoms and consequences that aren't particular to depression or anxiety. Because they ask generic overlapping questions. Which is their fault in the first place for misusing those, but now they have to deal with the fact that there is no meaningful anxiety or depression in ME/CFS, while their questionnaires keep saying so.

Because their questionnaires are flawed. And they shouldn't be using them as if they mean what they claim it does. Which is the foundation of their ideology.

And it's not limited to psychosomatic ideologues, those flawed questionnaires are standard. So they are facing the reality that their entire constructs are meaningless, because the instruments and data they use to justify them are all flawed. This goes so much beyond just us, it reveals the near complete sham that is psychosomatic ideology. Once you remove all the invalid misdiagnoses, it's possible that there remains a small mass of people who do suffer from something like it, but at most it's many orders of magnitude than what it's been claimed, especially given the wildly inflated expansionist assertions about how "biopsychosocial disorders", however they want to call them, represent up to 1/3 of all medical consults.
 
Maat said:
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 :banghead:
Click to expand...
Glad you got back to your baseline. That must have been very tough.

You are a beast, I am in awe of your vision and work. Hope the complaint will get a good response.
 
Robert 1973 said:
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.
Click to expand...
Do they let you know of the edits before they publish? If not, that seems very strange to me to change someone's words in a quote without indicating it and without their approval.
 
forestglip said:
Do they let you know of the edits before they publish? If not, that seems very strange to me to change someone's words in a quote without indicating it and without their approval.
Click to expand...
It happens whenever you work with journalists and it also happens when writing reviews and books for scientific journals who have 'house-style' subeditors. It is a nightmare.
 
forestglip said:
Do they let you know of the edits before they publish? If not, that seems very strange to me to change someone's words in a quote without indicating it and without their approval.
Click to expand...
They always used to phone to discuss and agree edits but budgets are much tighter now – and turnaround times are shorter – so it almost never happens. It’s just something you have to accept if you submit a letter. I don’t mind them chopping bits out, as long as it doesn’t change the meaning, but it’s frustrating when they change words and/or meaning without consultation.

When I’ve had letters published in journals they have asked for approval of any edits but they have much more time than newspapers. The Lancet took nearly a year to publish one of my letters, whereas newspapers often publish letters online on the day they’re received.
 
Tree said:
Glad you got back to your baseline. That must have been very tough.

You are a beast, I am in awe of your vision and work. Hope the complaint will get a good response.
Click to expand...
Let's just say it wasn't a walk in the park.

I'm more like one of the Rasta octopus in Shark's Tale - 'dat's not de way ya play dat tune man!' (Big Marley Fan)

I've collected the relevant evidence supporting the complaint that I'm struggling to draft at the moment, due to cognitive issues. It will need checking over with legal eyes before it's ready to submit, as it is a different order of magnitude altogether. It's why I've already got a PHSO Case number.
 
Maat said:
Let's just say it wasn't a walk in the park.

I'm more like one of the Rasta octopus in Shark's Tale - 'dat's not de way ya play dat tune man!' (Big Marley Fan)

I've collected the relevant evidence supporting the complaint that I'm struggling to draft at the moment, due to cognitive issues. It will need checking over with legal eyes before it's ready to submit, as it is a different order of magnitude altogether. It's why I've already got a PHSO Case number.
Click to expand...
No I can imagine.

No woman, no cry right.

I’m afraid I do not have knowledge of British law, otherwise I would love to do that. Do we have any other legal minds on this forum?
 
Robert 1973 said:
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.
Click to expand...
Thanks you to all the pedants who resisted the temptation to point out that neither “which” nor “but” are prepositions. In this context I think “but” is a conjunction and “which” is a relative pronoun. But I’m happy to be corrected.
 
Carsen said:
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...

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.
 
You must log in or register to reply here.
Back
Top Bottom