How should biological researchers present their results about ME/CFS to the media - discussion thread.

[bobbler]

I don't. Where is your evidence, David? I am pretty sure that the evidence for all psychotherapy is as bad as PACE. Why concede this?

There is a big difference between wanting support and having someone to keep your spirits up while ill and psychotherapy.

If you concede that emotional states 'impact disease process' you are conceding the BPS position. It is another form of unjustified theorising. What are 'emotional states'? What is their mode of causation, and is it beyond nerves firing? Nobody has any scientific understanding of this that allows useful theorisation.

Indeed it has been using the strawman to move goalposts of ridiculousnesss and get the point of compromise to move - when there is no evidence for that point of compromise meaning it should be conceded, people just do it ‘to look reasonable’ but it’s a con.

And if we think the agenda of many is:

1. Make money from these non treatments being delivered

And/or

2. Delay access to support by insisting until said non treatments hoops have been exhausted

With a side dish of weaponising powers implicitly in. Mental health insinuations that weaken someone’s testimony about their own body and situation and rights within healthcare and other services

Then we should obviously stop doing this conceding

 

[bobbler]

I wish that ME researchers would just never mention “this proves it’s not all in the head” or anything regarding the BPS model. Every paper gets framed as “now we can prove it is a real disease” instead of just talking about the findings. The press therefore keep bringing up this negative stereotype of ME that perhaps otherwise would have been left in the past. Ignore, don’t address, move on assuming everyone knows it’s a non-psychological disease.

In an interview perhaps not unless it’s friendly interviewing situation

Similar with articles. I think it’s a point that can be said but only in situations where you have control

I like @Obermann ’s point about the burden of proof being on bps and the cheek of them getting away both with a guilty until proven innocent then no smoke without fire tactic, and also not being held to account for the harm it causes.

Which doesn’t have to be what’s measured in a trial but basic common sense of how it has be used to prevent people eg from getting adjustments (try CBT first) or healthcare or support ‘cos it might be caused by the mind’ we haven’t all unbundled well to capture as a truth (even though deep down people must realise this as many will have been sent on a yoga course instead of their job demands being looked at etc).

As if people they choose have to do the impossible and prove ‘a clean mind and thinking in line with their definition’ before getting their human rights back, at the same time as them closing all paths anyone could have to getting such certification because those selling the stuff ain’t going to and no one who doesn’t want to wreck their career can either, but more importantly it doesn’t matter as they well know it’s on your record as a black mark whether it’s correct or not for life, and on top of that propaganda will encourage more to do the same - with no ‘checking its right’ or ‘bar that must be met’ because there’s no evidence for it. Circular traps.

 

[bobbler]

This is exactly what I've been trying to argue.

We need to forget about it in our own messaging. If it gets thrown at us by others, we treat it with the disdain it deserves.

I think the way to take control is to use their own tricks by saying

‘Some dodgy characters with dated knowledge and views have spent years only allowing behavioural treatments that don’t work based on poor quality evidence, yet this also shows from eg the X angle how inappropriate their propaganda has been’

But toned down a bit … the gist being ‘not all but this type’ and I think a good brainstorm on those words to keep attaching to those who follow it. I’d recommend’dated’ is at least one we need to keep getting everyone saying verbatim. Old-fashioned maybe too.

So that when some interviewer does the same they are outing themselves as said person with dated views and ideologies.

Just like we get the ‘the patients aren’t gonna like this because they are anti-mental health’ sticking words in our mouths nonsense. To head off us being able to say no more of made up ‘treatments’ that never worked for anything other than the above agenda of stopping us from getting access to either support or anything that works being developed.

 

[Utsikt]

Yes, if no gene peaks, no evidence. But if there are sub-threshold peaks (and there are normally plenty of those in a GWAS) then replication is needed to support a claim of no evidence. Theoretically. Though if there are plenty of bio peaks that are significant, and no anxiety peaks, their case is weak. It depends on what DecodeME finds.

I take the position that to be able to claim that there is evidence for something, you need more than just >0.

There are many observations you can make that would be consistent with the earth being flat, but those can not reasonably be conceived as evidence for a flat earth if we know that there exists a more persuasive explanation for the measurements in the context of the totality of the evidence, and for all intents and purposes we’ve proven that the earth is round.

For the BPS views, we have concrete evidence against their theories because the treatments designed based on them have failed. Finding genes that correlate with anxiety does not make the BPS explanations more likely because they have already been disproven. And if DecodeME finds «biological» genes, we’ll also have quite strong proof for an alternative explanation, and even stronger when replicated or supported by successful treatments based on the findings.

 

[dave30th]

Sometimes autocorrect is genius.

I was once heading toward Kew Gardens (in Queens, NY, not London), and when I texted it got changed to "Jew Gardens." Well, there are quite a few members of my tribe living in Kew Gardens, but Jew Gardens? Really?

 

[Simon M]

For the BPS views, we have concrete evidence against their theories because the treatments designed based on them have failed.

Of course we do, and I'm well aware of that. And yet it hasn't gone away, not least because of the overwhelming popularity of mind body explanations.

take the position that to be able to claim that there is evidence for something, you need more than just >0.

Well, yes. But to change minds that are already firmly made up, I think we need a stronger result. It's no good saying "that's not good enough" and hoping they will go away. It hasn't worked before, I'm not sure this time will be any different. Maybe it's because I'm now an old timer that I take a different view.

I was one of several authors from here of a critique of the Pace trial recovery paper. The Pace authors arguments were shredded. They just shrug their shoulders and say that they preferred their interpretation, without offering any defence of the exposed flaws.

Sure, the paper helped helped weaken the argument. But BPS is still quite strong. And relying on logic to settle the argument, where some uncertainty remains – is unlikely to settle the job.

I don't know if you've seen one of these evidence cycles before, but if you haven't, you might be surprised at the limited power of good evidence. It's still surprises me every time I go through it, but at least I know it's coming.

And that's why I think we need to set the bar pretty high if we really want to change minds. If this was just about sensible interpretation of the evidence, we wouldn't be where we are now.

 

[Utsikt]

Of course we do, and I'm well aware of that. And yet it hasn't gone away, not least because of the overwhelming popularity of mind body explanations.


Well, yes. But to change minds that are already firmly made up, I think we need a stronger result. It's no good saying "that's not good enough" and hoping they will go away. It hasn't worked before, I'm not sure this time will be any different. Maybe it's because I'm now an old timer that I take a different view.

I was one of several authors from here of a critique of the Pace trial recovery paper. The Pace authors arguments were shredded. They just shrug their shoulders and say that they preferred their interpretation, without offering any defence of the exposed flaws.

Sure, the paper helped helped weaken the argument. But BPS is still quite strong. And relying on logic to settle the argument, where some uncertainty remains – is unlikely to settle the job.

I don't know if you've seen one of these evidence cycles before, but if you haven't, you might be surprised at the limited power of good evidence. It's still surprises me every time I go through it, but at least I know it's coming.

And that's why I think we need to set the bar pretty high if we really want to change minds. If this was just about sensible interpretation of the evidence, we wouldn't be where we are now.

I think we might be talking about two different things.

My intention has been to talk about what we can reasonably say based on hypothetical findings from DecodeME. Not what might change people’s minds (either core believers or fringe participants).

We can’t stop relying on logic just because other people are illogical. And we can’t go beyond the evidence. So I don’t know what more we can do.

I’ve been thoroughly disillusioned the past couple of years, so I’m not imagining that «good» results from DecodeME will make much of a difference to the public opinion or for the BPS crowd.

 

[Kitty]

I’m not imagining that «good» results from DecodeME will make much of a difference to the public opinion or for the BPS crowd.

Me neither. But if we find a disease modifying treatment that significantly reduces the symptoms, we'll be able to leave them behind.

For all the problems with medical systems, when decent evidence emerges for a chronic illness treatment that also passes cost/benefit tests, it is usually adopted. Sometimes without big headlines or public debate.

 

[rvallee]

Another important point that has been raised in many contributions here: In empirical sciences, it is impossible—or at least very difficult—to prove a negative. Even if we could identify processes that are relevant to the pathology of ME/CFS, one can always argue that there are other, unknown psychological factors that cause these processes. There are still researchers who claim that psychosocial factors influence which carriers of Helicobacter pylori develop ulcers. The burden of proof is on the person making the claim. We should avoid claims that it has been proven that psychological factors do not play a role in ME/CFS. By doing so, we accept that the burden of disproving psychological factors is on us. Instead, we should point out that there is no evidence of causal psychological factors, no validated biopsychosocial illness model, and no evidence based psychological or psychiatric treatment for ME/CFS.

Unfortunately, it's common belief in the profession that the burden of proof has been met here. It doesn't matter that it's false, what matters is that most actually believe it. And since it's not a reasonable position, there is no way to reason them out of it other than providing an actual explanation with actionable steps.

Every argument I have seen pointing this out has been met with blubbering about how it has been proven convincingly and how it's mean towards mental illness, as a concept, to say otherwise.

I have no idea how we counter that, because it's exactly like countering conspiracy fantasies, and that never works until someone is taken out of the cult that promotes those beliefs. When the "cult" here is literally the medical profession, we simply can't counter it without an actual solution to the problem.

We can't really ignore the arguments either, because they are authoritative. Doesn't matter that they're false, they are a default position that is unassailable, but they can't be reasoned with either, even with professionals. We are really caught in a giant Catch 22, and we know the only way out of it is the same thing that happened with peptic ulcers: here's the cause, here's the treatment, it works, you were wrong, suck it up.

 

[rvallee]

Except that that is largely a myth. There may have been psychologisers throughout history but there were all sorts of other theories.

Still reads the same to me. They weren't just psychologized, there were also other wrong theories, is pretty much the same as they were falsely psychologized. There are also such other false theories about ME/CFS, and they ultimately don't matter one bit because the psychologizing is completely overwhelming in its dominance when it's in the room, basically one elephant and a few mice. No one cares about the mice in this case. Literally no one. Well, except the elephant. Damn that analogy has some nice leg room.

 

[josepdelafuente]

This is quite an interesting article on this topic of how to change people's minds / convince them they're wrong / get them to understand and accept evidence:

https://www.theguardian.com/comment...ge-mind-evidence-arguing-social-relationships

It's an article in the Guardian newspaper - the headline is "This article won’t change your mind. Here’s why"

And the sub-heading is "Evidence shows that arguing our case rarely convinces others. It’s social relationships and actions that have that power"

 

[bobbler]

Me neither. But if we find a disease modifying treatment that significantly reduces the symptoms, we'll be able to leave them behind.

For all the problems with medical systems, when decent evidence emerges for a chronic illness treatment that also passes cost/benefit tests, it is usually adopted. Sometimes without big headlines or public debate.

Hmm I think this is one to look into in more specifics on its own thread. I think there are more complexities here for us and bearing in mind @Sasha ‘s thread on ‘what can we do to prepare’ that’s another part of what to prepare for that is less public so can brainstorm etc

But it would be an important piece of the puzzle to move things from ‘nothing we can offer’

That discussion on measures and clinics ie infrastructure then kicks in of course. I’m really glad we are talking about it now because we will be stepping into new debates on what that brings when already jaded and exhausted from all of this so having time to think always helps

 

[bobbler]

Unfortunately, it's common belief in the profession that the burden of proof has been met here. It doesn't matter that it's false, what matters is that most actually believe it. And since it's not a reasonable position, there is no way to reason them out of it other than providing an actual explanation with actionable steps.

Every argument I have seen pointing this out has been met with blubbering about how it has been proven convincingly and how it's mean towards mental illness, as a concept, to say otherwise.

I have no idea how we counter that, because it's exactly like countering conspiracy fantasies, and that never works until someone is taken out of the cult that promotes those beliefs. When the "cult" here is literally the medical profession, we simply can't counter it without an actual solution to the problem.

We can't really ignore the arguments either, because they are authoritative. Doesn't matter that they're false, they are a default position that is unassailable, but they can't be reasoned with either, even with professionals. We are really caught in a giant Catch 22, and we know the only way out of it is the same thing that happened with peptic ulcers: here's the cause, here's the treatment, it works, you were wrong, suck it up.

Yes we have two separate issues that feed each other:laypersons, those in the bubbles eg medical profession.

That latter one is from what I can see having to learn big picture ideas and ‘fact file level’ stuff on concepts, illnesses, what to do almost by rote albeit in short courses or even short one hour sessions. Not by doing a postgrad level essay critically analyzing the literature - unless it’s their specialty. And of course the specialty it’s been under has different methodological norms so those in them see nothing strange. And those outside just don’t think too hard on whether when they don’t get it/it doesn’t add up it’s because it’s genius stuff that isn’t their specialty unless it offends their sensibilities or seems infeasible.

I don’t think it’s going to be an easy one either

We probably do need an incredibly special plan on how we tackle this one because at the moment I think the stream of articles or cheap cpd sessions keeps things constantly stoked. Along with top down initiatives about ‘functional’ not having to name me/cfs specifically but being a wider day to day policy thing people have had to get used to toeing the line on like it’s a truism of triage - so fishing out the functionals will be permanently part of some people’s heuristic of their day job. And they aren’t noticing funding is getting diverted with it (out of medical care that could actually fix people) rather than that CBT department apparently keeping them from being overwhelmed. They genuinely believed they have these huge groups of people who shouldn’t be there that someone is keeping from their door.

So there’s more to even getting people to opening their ears than just a deservingness/injustice/correct/right/wrong thing. Even if getting inaccurate education stopped and useful stuff in its place might be a theoretical aspect in there. Some of what’s being learned is hidden in the processes.

Even if they knew what the right thing was does their job allow them to put people anywhere else and if not due to moral injury issue those little stories about where they get sent not being too bad become quite important if you are the one doing it. Or ‘greater good’ type arguments which is where I keep saying we need to point out this bps kingdom is far from cheap or money-saving, certainly not medium-term onwards (even if people do disappear for x weeks whilst doing a CBT course that doesn’t help).

 

[bobbler]

This is quite an interesting article on this topic of how to change people's minds / convince them they're wrong / get them to understand and accept evidence:

https://www.theguardian.com/comment...ge-mind-evidence-arguing-social-relationships

It's an article in the Guardian newspaper - the headline is "This article won’t change your mind. Here’s why"

And the sub-heading is "Evidence shows that arguing our case rarely convinces others. It’s social relationships and actions that have that power"

You’ve reminded me on this thread on episodic injustice and the following paper I posted there (which had pre-bunking and how to change beliefs etc)
Post in thread 'Focusing on epistemic injustice instead of "mind versus body"'
https://www.s4me.info/threads/focus...instead-of-mind-versus-body.30417/post-446943