DecodeME in the media

Hutan said:
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.
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I see what you did there! :laugh:
 
bobbler said:
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
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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.
 
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The news of Decode ME has reached Hungary too, although so far I have seen only one such article. Portfolio is the largest business/economic news site in the country. They wrote their article based on the one in the Financial Times but they don't really go into details about the study too much. They emphasize that ME/CFS has been stigmatized and neglected and Decode ME may finally help take the disease more seriously. (They gave it a very stupid title though, although that was kind of expected.)

In Hungarian: https://www.portfolio.hu/gazdasag/2...-mostanaban-meglepo-felfedezest-tettek-778777

Google translated version
 
Hutan said:
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.
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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.
 
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.
 
rvallee said:
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.
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I have been responding to people misunderstanding it on facebook and reddit all day, I wish this was explained more clearly.
 
Amw66 said:
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

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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?
.
 
Lou B Lou said:
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?
.
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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. 1754608642353.png
 
Sasha said:
All of the people in the DecodeME study had an ME/CFS diagnosis from a health professional.
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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.
 
Dolphin said:
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.
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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.
 
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.

rvallee said:
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.
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The entire cause of this appalling situation.

rvallee said:
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.
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A causal factor, even.
 
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.".
 
BrightCandle said:
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.
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This about the requirement to have been diagnosed by a health professional.

Perhaps it reduced the number of participants. But, I don't think it is fair to criticise DecodeME for the resulting cohort 'inheriting all the NHS bias around diagnosis'. There were a lot of questionnaires to ensure that people met ME/CFS criteria. It was a belt and braces approach. Substantial effort was made to ensure the people labelled with ME/CFS did in fact have ME/CFS.

I don't think not requiring an NHS diagnosis of ME/CFS would have made the sample better. The bias that applies to the NHS diagnosis of people with ME/CFS is much the same as the bias that applies to whether a person self-diagnoses with ME/CFS.
 
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