Criticisms of DecodeME - and responses to the criticisms

[Ariel]

Is there any evidence about anxiety impeding recovery? I'm not aware of that ever being studied, let alone objectively.

Just came across like moving the goalposts (yet again) to me.

 

[bobbler]

They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.

I just hear "but, but, but, but"

However unfortunately you are right that his dirty sophism BS won't be seen as empty one-liners like it is by those who want to hear it.

In essence the fact that Carson and the person on the sky interview had to resort to making up fibs to throw shade - childish and unprofessional to give out incorrect facts; and I'd hope they get found out and are seen as this

- and the best Wessely can do is the same old

The truth with Wessely's tosh is simply about him trying to get those words said in the same soundbite as the illness for the sake of it and are assuming listeners are either lazy and won't check whether what he says adds up or are looking for a dog to kick so happy to be led to an excuse of a wind-up phrase. Childish and unkind. Which shows what it has all really been about for him and seems purely strangely personal given I'm not aware anyone ever did anything to him that would normally warrant such.


And the upshot is that he wants someone to answer back saying these are such flippant statements that you could theoretically make them as false hysterical women type accusations for any person, whether they had any illness of any other type or not.

But the real answer is that it comes from a place of weaponising mental health to utilise it for the purposes of 'hysterical woman label slander' and so shouldn't be being levelled at anyone. Which shows how little respect he has for these serious mental health illnesses that he uses them as such. Noone ever did or ever should deserve it.

"don't know its not caused by anxiety" is the level of wind-up most men on the street can come up with to try and disempower a woman. "don't know its not caused by oranges" but they didn't appear on the genes either, so probably not, and what's that got to do with the price of eggs.

And the only reason someone is saying it in response to a genetic study showing promise that other useful clues that could lead to actual cures has been released is to distract from that and try and ruin it. Like a child trying to pee on another child's birthday present at their party by suggesting snide comments

And anyone reading it should find that nastily obvious. It would be pretty weird if it were a response to a study for a specific cancer finding 8 genes as clues to be these one-liners suggesting: 'maybe they should control their anxiety' or throwing shade suggesting its caused by depression when the study itself just looked at all genes and neither were there.


But the man who apparently ran the sector with his wife and others for so many years and pushed all patients into 'mental re-education' treatment inappropriately for decades should surely have shown a cure rate if that was anything to do with 'making people worse', so PACE proved these answers anyway by being a failure of his treatments.

This man had ample opportunity to show the answers if these were real questions (and what he wanted to suggest might be true wouldn't be disproven), rather than just nonsense using mental health stigma as a weapon to throw shade (and insult those suffering from those mental health conditions at the same time), and have completed a genetic study showing this if it was there to show. I'm unaware of him being refused funding.

So it's just the nasty little Popper's theory retort he thinks uses the 'can't prove a negative'.

Well, on that basis I personally "don't know that what he says isn't caused by being purely malicious" or "that he didn't hear it from a banana telling him it in his dream last night"

 

[Dolphin]

I am reading the Wessely quotes. Why give him a platform to spout unscientific theories and nonsense in this context?

From the piece:
"Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the same as depression, but that previous depression increases the risk of developing ME/CFS, which needs explaining, and I would be surprised if genetics does not play some part in this."

He said that while it is understood ME/CFS is not an anxiety disorder, "anxiety can impede recovery.""

There are a few more quotes - but the piece does not even contextualize his role in this story at all and so does not explain any conflicts of interest. It's massively irresponsible journalism both on the science and on the motives of people quoted.

ETA: The reporter is based in London, not the US, so I imagine that made it a lot easier to get these quotes into the piece.

ETA2: Newsweek should print a clarification on Wessley's role in the story. He is involved, not some random observer or Professor of psychiatry. The claim that anxiety can impede recovery is also baseless and irresponsible speculation. Would they print this for another illness? I am not able to email them at present but I would if I was more able.

I recall some research showing previous depression appearing to precede ME/CFS. The problem was it often takes years to get diagnosed. So in the years before diagnosis, patients may appear depressed either due to the physical symptoms of ME/CFS having some similarity to depression or because they are distressed from struggling with a disabling chronic illness for which they are not getting support and accommodations at work, school, home, etc.

Experienced clinicians like Wessely and White should have known diagnosis often took years (particularly in the 1990s) and discussed it but either didn’t at all or maybe only in passing.

 

[hotblack]

Just came across like moving the goalposts (yet again) to me.

Sounds to be like they’re anxious about their reputations

 

[hotblack]

Experienced clinicians like Wessely and White should have known diagnosis often took years (particularly in the 1990s) and discussed it but either didn’t at all or maybe only in passing.

They should also understand correlation vs causation, good study design, how to read a scientific paper and Bradford Hill criteria … and yet

 

[Hutan]

In that Newsweek article, it was great that Chris was quoted as saying ME/CFS is often misdiagnosed as depression. His two talking points there were very good.

"ME/CFS has often been misdiagnosed as depression or anxiety," Ponting said. "We checked whether DecodeME's eight genetic signals had been found before for other diseases, but drew a blank."

Anyone paying attention would then note that those misdiagnoses are likely to precede a diagnosis of ME/CFS, rather than previous depression increasing the risk of developing ME/CFS.

"Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the same as depression, but that previous depression increases the risk of developing ME/CFS, which needs explaining, and I would be surprised if genetics does not play some part in this."

 

[Utsikt]

In that Newsweek article, it was great that Chris was quoted as saying ME/CFS is often misdiagnosed as depression. His two talking points there were very good.



Anyone paying attention would then note that those misdiagnoses are likely to precede a diagnosis of ME/CFS, rather than previous depression increasing the risk of developing ME/CFS.

I see what you did there!

 

[rvallee]

what people are very worried about with this particular piece of research is that I’m quite a lot of the people who were part of the study had actually self-reported this condition so they hadn’t necessarily had a formal diagnosis

This is really something that should be strongly emphasized in response: this is an entirely medicine-created problem, where most physicians refuse to diagnose ME/CFS, and most health care systems strongly discourage it. Even though it's mostly misleading because there were additional checks, and that person clearly did not bother to find out.

We should not have this problem, it's entirely a consequence of a profession derelict in its duties with its obsession with psychologizing anything they don't understand, and systems that have failed us at every single opportunity despite being constantly petitioned to do better and shown how bad things are. Once again a problem that we have loudly objected to is being used against us to downplay everything about us.

The truth is that we should have been able to easily find 25K people with clinically diagnosed ME/CFS, there are so many more, this process could have been helped by recruiting and channelling those into the studies, thus ensuring more robust findings. In fact, as far as I know there aren't even 25K people in the UK with a clinical diagnosis of ME/CFS, entirely by choice.

But it did not happen, and the only reason for this is that medicine has failed us miserably, have simply refused to do their job. We did not do this, in fact we have specifically objected to it, and yet again it's being used against us. And because they didn't do their job, we can't have jobs, so while many governments, and especially the UK's, are loudly whining about the high costs of disabled people not being able to work, the only reason why is because THEY didn't do THEIR job. So now they need to do their job so we can regain fulfilling lives.

 

[Amw66]

BPS adding community notes to X posts .
Suspected as being Carson but plenty other candidates .
I can't see them ( seemingly you need to be verified )
Essentially non replication being evidence if false positives

 

[rvallee]

In that Newsweek article, it was great that Chris was quoted as saying ME/CFS is often misdiagnosed as depression. His two talking points there were very good.



Anyone paying attention would then note that those misdiagnoses are likely to precede a diagnosis of ME/CFS, rather than previous depression increasing the risk of developing ME/CFS.

And as we saw in many studies, including a recent paper about MS, this is a common problem, where the prodrome phase is not taken as such, but instead misdiagnosed as mental illness, creating the illusion that it is a risk factor. All of this should be obvious when you consider how common it is to take years to diagnose many diseases.

What they are doing, in fact, is using their own past errors to justify new errors. A systemic problem, not at all limited to ME/CFS, but here those mistakes have completely dominated everything.

 

[rvallee]

I do notice a lot of misunderstanding in the coverage about what a GWAS is, framing it somewhat as this meaning a genetic cause for the illness, rather than the actual purpose of a GWAS, which is to narrow down the possible mechanisms.

Unless I myself misunderstood what a GWAS is or what the results mean, but it seems mostly interpreted the wrong way.

 

[Alinda]

I do notice a lot of misunderstanding in the coverage about what a GWAS is, framing it somewhat as this meaning a genetic cause for the illness, rather than the actual purpose of a GWAS, which is to narrow down the possible mechanisms.

Unless I myself misunderstood what a GWAS is or what the results mean, but it seems mostly interpreted the wrong way.

I have been responding to people misunderstanding it on facebook and reddit all day, I wish this was explained more clearly.

 

[Sasha]

The truth is that we should have been able to easily find 25K people with clinically diagnosed ME/CFS

All of the people in the DecodeME study had an ME/CFS diagnosis from a health professional.

 

[Lou B Lou]

BPS adding community notes to X posts .
Suspected as being Carson but plenty other candidates .
I can't see them ( seemingly you need to be verified )
Essentially non replication being evidence if false positives

Is anyone here a verified Twitter/X user? If so could you post a copy of the Community Note that's been attached to that twitter/X thread please?
.

 

[Deanne NZ]

Is anyone here a verified Twitter/X user? If so could you post a copy of the Community Note that's been attached to that twitter/X thread please?
.

I saw them not because I am verified but because I signed up to be able to see notes & then vote helpful or not. I voted not of course and assume many others did too because from what I can see the notes are no longer appearing. There was one Twitter user @capitalistFraud AKA Psychiatry Capitalist Fraud who was posting multiple copies of the same reply- citing the lack of replication making the DecodeMe results worthless.

 

[BrightCandle]

All of the people in the DecodeME study had an ME/CFS diagnosis from a health professional.

Its a blessing and a curse. Its a ward against the "self diagnosis" accusations but since its not actually been done on the basis of CCC/International it wasn't sufficient anyway for inclusion, just purely there for the purpose of that one accusation. Its cost however is not making the original goal of 25k patients due to the lack of NHS diagnosis and its also meant the cohort of patients has inherited all the NHS bias around diagnosis, which in hindsight there are a lot of. I think it cost more than it gave but its done now and those biases are going to move forward in every use of this data.

 

[MrMagoo]

I recall some research showing previous depression appearing to precede ME/CFS. The problem was it often takes years to get diagnosed. So in the years before diagnosis, patients may appear depressed either due to the physical symptoms of ME/CFS having some similarity to depression or because they are distressed from struggling with a disabling chronic illness for which they are not getting support and accommodations at work, school, home, etc.

Experienced clinicians like Wessely and White should have known diagnosis often took years (particularly in the 1990s) and discussed it but either didn’t at all or maybe only in passing.

Yes, we just had an article posted on the forum about MS patients seeing their Dr for “mental health” appointments a lot in the years prior to being diagnosed with MS. Or seeing their Dr a lot and the reason being recorded as “mental health”.

Peter White got my diagnosis wrong, this will never not be funny.

 

[Sean]

Wessely is just pulling his usual ex cathedra act. It is true because the Great Man said so.

Accountability is coming, Sir Simon, and there is nothing you can do to stop it. And you thoroughly deserve it. You have been a deeply malign influence on this world, and have caused immense and completely unnecessary suffering. That is your real legacy, which no amount of honours and titles and political protection can ever erase.

Yet the one thing you could and should do to help, is the the one thing you will not, indeed cannot, do: Shut the fuck up, and get out of our lives.

But it did not happen, and the only reason for this is that medicine has failed us miserably, have simply refused to do their job. We did not do this, in fact we have specifically objected to it, and yet again it's being used against us. And because they didn't do their job, we can't have jobs, so while many governments, and especially the UK's, are loudly whining about the high costs of disabled people not being able to work, the only reason why is because THEY didn't do THEIR job.

The entire cause of this appalling situation.

And as we saw in many studies, including a recent paper about MS, this is a common problem, where the prodrome phase is not taken as such, but instead misdiagnosed as mental illness, creating the illusion that it is a risk factor.

A causal factor, even.

 

[MrMagoo]

Is anyone here a verified Twitter/X user? If so could you post a copy of the Community Note that's been attached to that twitter/X thread please?
.

Apparently it’s gone, butit has been screenshotted

 

[Andy]

For clarity.

To be asked to donate a DNA sample our participants had to both confirm a clinician's diagnosis AND meet either CCC and/or IOM criteria (and the bast majority of those who met one criteria met both). Criteria for a diagnosis by a clinician, for good reason, will almost always be more loosely defined than criteria used for research.

We recruited 26k participants who had a clinical diagnosis, which then fell to 21k who met CCC and/or IOM. From the FAQ, "We collected 18,051 DNA samples from people with ME/CFS across the UK. After DNA extraction, genotyping and quality control, we had data for 16,730 samples suitable for GWAS analysis. We then matched the ancestry of the participants samples with those of the control group to ensure consistency, this meant 15,579 DNA samples were used for these initial results.".