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

Amw66 said:
Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly
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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.
 
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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.
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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:
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
 
Utsikt said:
Could it not also have made patterns appear that aren’t really there because some non-patients had something else in common?
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I'm not an expert, but I don't think that is likely.

If there was a systematic error maybe there could be non-related patterns. For example if there were a lot of people with some unrelated genetic decease that could be mistaken for ME/CFS.

But if there is high error rate in the diagnosis for ME/CFS that would probably include a lot of people with various psychological illnesses such as burnout, depression and hypochondria. I don't think that would create systematic patterns in the data. It would just make the existing patterns more blurry. And I don't think blurry data would create spurious patterns. The size of the study and the statistical methods ensure that.
 
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Liie said:
Isn't this criticism backwards? (Even if it were true, which if I have understood correctly it isn't.)
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Yes, it's backwards. The study results confirm the validity of what was done, that includes the diagnostic criteria, recruitment process, and analysis.

The identified regions are different from those found in GWAS of other conditions and seem to tell a coherent story about a disease initiated by some immunological factors, with the brain being the organ that appears to be most affected. That's what patients have been saying for decades. The findings don't look like random noise or stuff you would find due to some bias in the data. Even if bias is distorting the findings to some degree, it doesn't look significant.

It's always possible that some flaw will be recognized that reduces the credibility of the findings, but currently the appearance is of valid and reliable results. That said, I'm not a researcher.
 
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Liie said:
But if there is high error rate in the diagnosis for ME/CFS that would probably include a lot of people with various psychological illnesses such as burnout, depression and hypochondria. I don't think that would create systematic patterns in the data. It would just make the existing patterns more blurry. And I don't think blurry data would create spurious patterns. The size of the study and the statistical methods ensure that.
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All of those conditions have genetic risk factors themselves. They are just as much physical even though they are often placed under the label «psychological».

So they would also pop up in the genetic hits if the cohorts were sufficiently contaminated.
 
Utsikt said:
All of those conditions have genetic risk factors themselves. They are just as much physical even though they are often placed under the label «psychological».

So they would also pop up in the genetic hits if the cohorts were sufficiently contaminated.
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Yes. If a condition only makes up a small amount of ME/CFS cases, but has a really high heritability. It could tip scales fast.
 
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