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

[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.

 

[Kitty]

COFFI please get in touch, I’ve got some magic beans to sell to you!

Caffeine-free I hope.

 

[MrMagoo]

Caffeine-free I hope.

Some people just don’t want their beans to grow, do they.

 

[Holinger]

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

I wonder if professors Daniel Clauw and Andrew Lloyd are still involved with Coffi. I am not their biggest fan but this seems a bit desperate, unscientific and silly even for them.

 

[Sean]

We also know that recovery is possible,​

They know no such thing. They merely assert it.

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?

Yup. That is exactly what they will do, indeed are already doing via FND, rather successfully thus far unfortunately.

And they will keep right on trying to foist this garbage onto sick vulnerable innocent patients until the rest of the world stops them.

 

[BrokenBeaktheBrave]

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?

They seem to be assigning a dx of FND to those with an exisiting diagnosis of MECFS or just going straight to FND and ignoring the MECFS symptoms altogether. It's just backdoor CBT and GET.

 

[Sean]

They seem to be assigning a dx of FND to those with an exisiting diagnosis of MECFS or just going straight to FND and ignoring the MECFS symptoms altogether. It's just backdoor CBT and GET.

That is exactly what they are doing, and have been for some time.

The rest of medicine, and the broader governance structure, need to wake the hell up to it and stop them.

 

[Snow Leopard]

The recovery point creates an interesting opportunity - DecodeME *should* keep track of those who recover in the future and examine reported experiences of those people. DecodeME has a very large, relatively unbiased cohort that could be great for following people over time.

 

[Andy]

The recovery point creates an interesting opportunity - DecodeME *should* keep track of those who recover in the future and examine reported experiences of those people. DecodeME has a very large, relatively unbiased cohort that could be great for following people over time.

The much reduced DecodeME team have no capacity or funding to do so, however the cohort is obviously there if some other research team with funding wished to recruit participants from it for such a project.

 

[Snow Leopard]

I think it is worth pushing that idea out there for those who have funding...

 

[EndME]

I think it is worth pushing that idea out there for those who have funding...

We've discussed this idea and possible problems for it on a decodeme follow-up thread: https://www.s4me.info/threads/what-...e-using-the-decodeme-cohort.45191/post-625666, https://www.s4me.info/threads/what-...e-using-the-decodeme-cohort.45191/post-625965. I think it is worthwhile pursuing, whoever ends up doing it. Maybe COFFI people were reading that thread?

I wonder what the plan with SequenceME will be. They might recontact participants but I'm unsure whether they also re-plan to assess "ME/CFS status" (whether alternative diagnosis have come up or whether the symptoms still match the criteria), but if SequenceME does plan to assess "ME/CFS status" then you'd already have a cohort of non-recovered people after a certain time, which could already be interesting.

 

[Utsikt]

I wonder if professors Daniel Clauw and Andrew Lloyd are still involved with Coffi. I am not their biggest fan but this seems a bit desperate, unscientific and silly even for them.

Lloyd is in the executive committee and co-chair with Wyller in the steering committee. Clauw is in the scientific advisory committee.

 

[Andy]

I wonder what the plan with SequenceME will be. They might recontact participants but I'm unsure whether they also re-plan to assess "ME/CFS status" (whether alternative diagnosis have come up or whether the symptoms still match the criteria), but if SequenceME does plan to assess "ME/CFS status" then you'd already have a cohort of non-recovered people after a certain time, which could already be interesting.

No, SequenceME doesn't plan to re-assess ME/CFS status of the samples it would be using that were collected as part of DecodeME.