DecodeME in the media

[Sasha]

I have never knowingly not sweated something!

Let's form a club!

 

[Kiristar]

Thanks Andy. I'm adding "or both" to both posts!

I reads as if the patients state this but I assume it was done blind (to the patient) by reported symptom screening

 

[Kiristar]

Another argument for the need to recruit direct is the lack of specialist ME health services ...

 

[Andy]

I reads as if the patients state this but I assume it was done blind (to the patient) by reported symptom screening

Exactly.

 

[Amw66]

So- as a priority- how can this research be utilized best to address the current hellish situation for

1. Those being denied nourishment / treatment ( thinking of the 3 or so females in hospital struggling to be taken seriously and in deteriorating health)
2. Parents being accused of FII (or worse)
3. paediatric services headed up by psychs - surely not the most appropriate speciality given no links to anxiety and depression ( and it virtually always anxiety as an attached diagnosis for kids)
4. a counter argument for FND as this is being rolled out ad infinitum?

 

[Yann04]

The no link to depression and anxiety found and the hits having (as far as I’m aware) no overlaps with the FND GWAS. (Even tho presumably misdiagnosed pwME ended up in that GWAS), is probably two angles of attack.

 

[Evergreen]

And correcting from ICC to CCC?

Done!

 

[Turtle]

Vague assertions won't make the genetic evidence go away. I would like to see the evidence they have on depression and anxiety. I'm not aware of any that's any good.

The suggestion that it was going to be a long haul struck me as slightly wishful thinking, because then new evidence undermines the BPS model.

I don't think the comparison with psychiatric illnesses is that relevant , because they tend to have broad, complex signals. I understand that depression has a substantial genetic overlap with endocrine illnesses, for instance.

So far, I've been struck by how little the psychosocial community has come up with in response to DecodeME findings. I suspect most people reading the Newsweek article will see this is a major development in understanding the illness, and not that nothing much has changed.

BPS needed a whole year to react to the Wüst group findings and, even after a whole year of thought, were reprimanded by the Wüst group for their inaccuracies.

 

[Joan Crawford]

The reality is that he has kept changing what he is saying over the years - and claiming that this is what he was saying all along, when this is not the case. And you see the same pattern, over again. His "views" are a moving target, both currently and in the ever-changing re-telling of the past. To me, that is evidence of bad faith.

It's the same with other people in this story. If you keep saying different things and say you were saying them all along, how can you say you really believe those things? I don't think these people are delusional in this respect. Yes, they are protecting their reputations. I don't think they care about "the facts", or evidence. It's not that they are fooling themselves - if that were the case they would not be able to carry on their agenda so convincingly. It's all politics.

Yes, views change as to the audience and the hoped for outcomes (as in more funding for the gravy train), not: is there actual, tangible better outcomes for patients. That's almost a side show. So this has to be bad faith as careers and building empires was or became more important than patients. The empire they built has no substance or foundations. All falls away to nothing. Not nothing for the patients who in good faith want answers, to be well and simply get on with their lives.

 

[Jonathan Edwards]

So- as a priority- how can this research be utilized best to address the current hellish situation for

I think there is an opportunity to get paediatricians interested in doing genetic studies and in particular on people with an onset of ME/CFS before age 13. These people are the most likely to have strong genetic risk factors. Genetics is something paediatricians think about all the time. A replication study on the 8 DecodeME hits plus a rare gene search on whole genome ought to produce something tangible even with as few as 500 cases I would think. An international consortium effort might be productive, if control populations can be adequately matched.

 

[Peter T]

His "views" are a moving target, both currently and in the ever-changing re-telling of the past. To me, that is evidence of bad faith.

I have known people that have the basic assumption that they are always right, so if something they previously said is shown to be wrong, that is a logical impossibility and the person reporting it must be deliberately lying, certainly they never said, wrote or intended that.

It is possible that Wessely is not consciously acting in ‘bad faith’ merely correcting other’s misunderstandings of what he said which a priori must have been true, despite what can be proved by objective reality. However the end result is just as harmful as if he was being deliberately malicious.

 

[Nightsong]

Something I have noticed about the media coverage - not really from the Edinburgh team directly, but in quotes & interview comments from advocates & patient & charity representatives - even in coverage from otherwise sympathetic journalists - is that these & other findings continue to be presented as "proving" that ME/CFS is not "all in the mind".

I think that, after all this time, advocates need to move past this narrative; by even mentioning it, it introduces the idea into the mind of the reader, who might not have been thinking about it at all but, if the point is continually insisted upon, might think "perhaps they doth protest too much". It seems too apologetic, too defensive, too potentially counterproductive. I think we need to move to a stage where it is simply assumed that ME/CFS is a disease like any other; if the quote would read badly if "ME/CFS" was replaced with "MS", it needs to be re-worded.

Talk about what patients actually need, talk about the avenues for future research - anything but this narrative, which just serves to give further oxygen to psychobehaviouralism.

 

[Hoopoe]

[Carson SMC] 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.

Carson gives the impression of citing an authoritative source on the high misdiagnosis rates in ME/CFS diagnosed by questionnaire when this is not the case.

"Diagnosis was done by questionnaire" makes it sound like patients filled in questionnaires about symptoms, while they were asked about diagnosis received by a health professional.

On the NIH study, he presumably refers to these numbers "27 underwent in-person research evaluation and 17 were determined to have PI-ME/CFS by a panel of clinical experts with unanimous consensus." These 27 were all people with documented diagnosis of ME/CFS by a physician. If I remember right at this step there were also other checks to further exclude anyone with certain comorbidities. So misdiagnosis is high if we define misdiagnosis as including not just false diagnosis, but also having significant neurological or fatiguing illnesses or lyme disease, and there not being a consensus among the panel that the person really had ME/CFS.

Even if we assume significant misdiagnosis, it still leave 8 statistically significant hits.

 

[Jonathan Edwards]

I am out of London at present but when I return to London and UCL I will get in touch with James Cox and John Wood who have been working on the genetics of pain. They have picked up some intriguing molecular targets. ME/CFS will not immediately be on their radar but they are the sort of people to get interested I think. They should also know of paediatric clinical interests.

 

[hotblack]

I am out of London at present but when I return to London and UCL I will get in touch with James Cox and John Wood who have been working on the genetics of pain

Molecular neurobiology and pain genetics, that’s the ticket!

Wolfson Institute for Biomedical Research

Established in 1995, the UCL Wolfson Institute for Biomedical Research (WIBR) focuses on fundamental and translational neuroscience within UCL's neuroscience community.

www.ucl.ac.uk

 

[Lou B Lou]

The reality is that he has kept changing what he is saying over the years - and claiming that this is what he was saying all along, when this is not the case. And you see the same pattern, over again. His "views" are a moving target, both currently and in the ever-changing re-telling of the past. To me, that is evidence of bad faith.

It's the same with other people in this story. If you keep saying different things and say you were saying them all along, how can you say you really believe those things? I don't think these people are delusional in this respect. Yes, they are protecting their reputations. I don't think they care about "the facts", or evidence. It's not that they are fooling themselves - if that were the case they would not be able to carry on their agenda so convincingly. It's all politics.

From the first of a series of open letters from the Countess of Mar to Simon Wessely, with his replies. December 2012:

Lady Mar to SW:

".. So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB [Disability Living Allowance Assessment Board] on 2 November 1993 which was considering those with ME/CFS you said: “Benefits can often make people worse”, yet in your letter to Dr Mansell Aylward at the DSS [Department of Social Security] you wrote: “CFS sufferers should be entitled to the full range of benefits”. Given that, in 1990 you had written: “A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined ……..in many of them, the usual findings of simulated muscle weakness were present” (Recent advances in Clinical Neurology, 1990, pp 85 – 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME."

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.margaretwilliams.me/2012/mar-wessely-correspondence_dec2012.pdf


The entire exchange of letters is worth reading.

 

[Robert 1973]

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

Not that I’m aware of. But there is quite a lot of evidence that suggests that it’s wrong:

This prospective study found that psychological symptoms were not predictive of developing ME/CFS: https://pubmed.ncbi.nlm.nih.gov/33367564/

I think Jason may have done other prospects studies with similar results.

The idea that anxiety impedes recovery is what they refer to as fear avoidance behaviour in their CBT/GET models. Trials of therapies based on these models have failed to demonstrate efficacy.

DecodeME found 8 genetic signals linked to ME/CFS. None are associated with anxiety or depression.

Wessely and his colleagues have been promoting the idea that anxiety perpetuates ME/CFS since the 1980s. They have had ample opportunities to find evidence in support of their belief, but to date, as far as I’m aware, they have produced none.

DecodeME should be the end of the road for this harmful trope.

 

[Robert 1973]

I think there is an opportunity to get paediatricians interested in doing genetic studies and in particular on people with an onset of ME/CFS before age 13. These people are the most likely to have strong genetic risk factors. Genetics is something paediatricians think about all the time. A replication study on the 8 DecodeME hits plus a rare gene search on whole genome ought to produce something tangible even with as few as 500 cases I would think. An international consortium effort might be productive, if control populations can be adequately matched.

I sent your hypothesis paper to Helen Lachmann but no reply. Not sure how well you know her but I’m wondering if she or anyone in her team at the NAC would be interested and in position take things any further.

 

[MrMagoo]

My impression, though, is that the BPS people are just talking to themselves. I would ignore everything they put out.

This.
The general public aren’t looking “behind the headline” they believe ME is genetic now because that’s kind of what the headline said (that’s not even what it actually said).

They will also still believe that being “burned out” and “run down” and “overdoing it” and that all causing “inflammation” contributes to triggering it, and depression is all part of that.

But that’s because the general public aren't scientists, and these are all popular themes in western culture, and people don’t really do deep research on this kind of thing, they just take in sound bites.

 

[rvallee]

It’s entirely about that isn’t it, what they’ve emotionally invested in this idea. Because if you’ve got that much of a reputation, the positions they have, isn’t it wiser to just admit what is in front of you and move on? Why bang this drum, it makes no sense. It also shows a real inflexibility which is exactly what they’ve accused us of. Some would almost say it’s projection…

They've also easily gotten away with it for decades, putting about as much effort into as farting in a general direction. That breeds laziness and complacency. It's one reason why they are so awful at arguing their case: they never had to. They could always simply voice their opinions out loud and it was received as simple statements of facts.

So far I don't remember there being a single contentious interview with any of them, because they are never placed in such a situation. They are always given total deference and never face critical questioning. They are instead platformed into being allowed to say whatever makes them look good.

I can't see them changing until those conditions change. They have no reason to. Once those conditions change, though, it should be a rather nasty and hard fall from grace, but they'll likely still be defended anyway, because when someone manages to sell cheap pseudoscientific junk to a group of professionals, the group of professionals is just as guilty of failing. None of this was ever credible.