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

[Utsikt]

8. This narrative may lead them to believe the condition cannot be influenced by approaches based on a biopsychosocial approach, which is clearly helping many people to reduce symptoms and some to recover.

This is a blatant lie.

10. The article states there are no effective treatments, but this is incorrect. There are a range of strategies for rehabilitation, drawing on the biopsychosocial explanation of this condition. These include cognitive behaviour therapy, approaches to safely increase activity and mind-body approaches. The research indicates these options may help people reduce symptoms and ensure some recover. Putting patients on hold with this condition awaiting a drug could be unhelpful.

This is a blatant lie.

11. We also know that recovery is possible, and question why recovered patients were not included in the genetic analysis. Maybe this is a question to be added in further research. It would be interesting to know whether genetic, environmental, or psychological factors influencing the occurrence, severity and chance of recovery.

I wonder if COFFI could propose a way to recruit and verify both the diagnosis and subsequent recovery of a sufficiently large amount of recovered ME/CFS patients. This is like asking NASA why they don’t just teleport to Mars instead of using spaceships.

15. We note that the eight genetic markers reported in the pre-print were associated with the condition, but the size of the effect found were modest. This means that the same genetic markers were also present in many healthy control participants. This makes their isolated interpretation limited. Further analysis looking at various gene combinations may be more informative.

This completely misses the point about genes always being causal, and always pointing towards disease mechanisms. It also misses the point about the effect of treatments being largely independent of the effect size of the genes the treatments were based on.

18. We note that the ME/CFS diagnosis was based on self-report.

It was based on self report of a diagnosis by an HCP and fulfilment of the diagnostic criteria based on questionnaires.

 

[Hoopoe]

We note that the eight genetic markers reported in the pre-print were associated with the condition, but the size of the effect found were modest. This means that the same genetic markers were also present in many healthy control participants. This makes their isolated interpretation limited. Further analysis looking at various gene combinations may be more informative.

COFFI doesn't understand GWAS. They are based on studying common SNPs, so inevitably, they will be present in healthy controls at very similar rates. The goal is not find to the genes with largest impact, but to identify the regions associated with the disease. This permits more precise study. That these common SNPs have little individual impact is irrelevant because drugs targeting the exact mechanisms can have very large impact.

 

[Kitty]

More people with nothing to say doing so at tedious length.

20. In summary, this large study has some interesting findings with specific genes identified. This is a contribution to what we know already, and needs replication.

If they insisted on commenting, that would have done. But no, they can't resist putting their ignorance on display.

 

[Trish]

Their patient group includes Paul Garner, others who recovered from Long Covid and the chair of Recovery Norway, so their response is unsurprising. Similarly their clinician group are fans of their psychobehavioural approach.

 

[rvallee]

Response to DecodeME Preprint​

Statement from researchers and consumers from the Collaborative on Fatigue and related symptoms Following Infection (COFFI)

The complete lack of integrity these people are showing is truly excessive. A million toilets being flushed will never produce this much poop mist.

 

[MrMagoo]

7. Genes are part of the picture, but there is a danger with this emphasis.

The statement “we see it in the blood” implies for consumers that genes “cause” the condition.

This statement may contribute to some patients believing nothing can be done unless we get a biomedical cure.

So at point7 it gets all Garnerish and doesn’t make sense, so I stopped reading

 

[rvallee]

This is a blatant lie.

I stopped counting very early, and it went on and on.

 

[Jonathan Edwards]

Hello-o-o. The earth is flat! It really is!
Hello- o-o.

 

[MrMagoo]

Stating that the earth may not be flat is raising public expectations that we are about to able to establish it is round. This is unfair as some members of the public may try to walk on a curve which isn’t there, and fall over, so please stop saying it. Or else.

 

[Simon M]

18. We note that the ME/CFS diagnosis was based on self-report. This means the patients will be quite varied, and only a small minority reported onset with a documented infection, whereas fatigue conditions can arise because of many different precipitating causes. This wide variation in the patients may well lead to flawed positive associations with genes that have no influence; and on the other hand, may miss actual associations.

Okay, so this was a self-report of a healthcare professional diagnosis, supported by the DecodeME criteria, which required post-exertion malaise, a symptom pretty specific for ME/CFS. So, a fairly well defined cohort. But had it been varied, that would make it more likely to find nothing, not to find false positives. They don't seem to have a very good grasp of GWAS or wider issues.

DecodeME found 63% had self-reported infectious onset. Other studies find a higher rate, but DecodeME used a better question, allowing "don't know" as an answer.

And they are absolutely right that many fatiguing conditions have different triggers and causes. A sizable GP practice study by Simon W in the 90s looked at people with fatigue and askedthem what they thought the cause was. In most cases they cited psychosocial causes, such a stress.

But DecodeME is studying ME/CFS. I'm not sure they realise there's a difference between ME/CFS and all fatiguing conditions.

I know, so much of what they say doesn't make sense, but the misunderstandings they demonstrate here seem fundamental.

 

[forestglip]

only a small minority reported onset with a documented infection, whereas fatigue conditions can arise because of many different precipitating causes.

DecodeME found 63% had self-reported infectious onset. Other studies find a higher rate, but DecodeME used a better question, allowing "don't know" as an answer.

Are they referring to something else when they say "small minority"? 63% is clearly not a minority.

They refer to "documented" infection. Is there data on what proportion of these infections in DecodeME were "documented"?

 

[Kitty]

They refer to "documented" infection.

It's not clear what it even means.

Most mild infections aren't recorded in people's medical notes, and even if participants consulted a doctor at the time, in most cases the GP wouldn't have been able to identify the infection with much precision.

So why would a GP note saying "respiratory infection" or "GI upset" somehow have more value than a participant saying they'd been ill before onset? Neither are proof.

 

[Utsikt]

They are just grasping a imaginary straws in a futile attempt to devalue any and all research that might be perceived as a threat against their hegemony.

 

[Peter T]

“11. We also know that recovery is possible, and question why recovered patients were not included in the genetic analysis. Maybe this is a question to be added in further research. It would be interesting to know whether genetic, environmental, or psychological factors influencing the occurrence, severity and chance of recovery.”

The Coffi members have made absolutely no attempt to distinguish between people who are reported as recovered from ME/CFS and those that do not, but are happy to use their purported existence to justify providing their preferred psychological and behavioural interventions to everyone with ME/CFS, despite the high levels of reported harm from these interventions. Indeed they seem to have actively avoided recording harms, rather asserting harms do not happen when specialists clinicians provide their input, despite extensive survey evidence to the contrary.

It strikes me as rank hypocrisy to criticise DecodeME for not doing what they have failed to address in any way for some decades. If recovery is so common why do the studies they rely on provide no object evidence for improvement, rather demonstrate that subject reports of improvement are transient.

 

[Simon M]

Are they referring to something else when they say "small minority"? 63% is clearly not a minority.

They refer to "documented" infection. Is there data on what proportion of these infections in DecodeME were "documented"?

Participants were asked if the infection for either infectious mononucleosis (glandular fever) or Covid had been confirmed by a test. For mono, this would be a lab test, which is often done in severe cases. I can't remember if the Covid question includes the option includes a home test.

The questionnaire didn't ask if people have been tested for any other infection – because the vast majority of infections are not routinely tested for

 

[RedFox]

COFFI is wrong, DecodeME really is groundbreaking. It's the first bite of the cake.

 

[Kitty]

DecodeME really is groundbreaking. It's the first bite of the cake.

That might be part of COFFI's problem.

It'll be interesting to see what happens over the next couple of years with some of these self-appointed "experts".

Will some of them see which way the wind is blowing and take pragmatic action? Will they go quiet on ME/CFS and just look for other soft targets to exploit?

 

[Midnattsol]

But DecodeME is studying ME/CFS. I'm not sure they realise there's a difference between ME/CFS and all fatiguing conditions.

At least the Norwegian members of COFFI argue for fatigue being a spectrum, with CFS on the extreme end. So I'd say they don't see a difference between ME and other fatigue.

 

[SNT Gatchaman]

a biopsychosocial approach, which is clearly helping many people to reduce symptoms and some to recover.

There are a range of strategies for rehabilitation, drawing on the biopsychosocial explanation of this condition. These include cognitive behaviour therapy, approaches to safely increase activity and mind-body approaches. The research indicates these options may help people reduce symptoms and ensure some recover.

That seems a bit anaemic from the BPS people.

"just maybe you might recover"

"not with that attitude"

 

[MrMagoo]

That seems a bit anaemic from the BPS people.

"just maybe you might recover"

"not with that attitude"

Plausible deniability is important if you’re shilling an untested cure.
COFFI please get in touch, I’ve got some magic beans to sell to you! They may grow all the way to a different world.