Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

I didn't mean open talks for patients instead of their closed meeting. I meant it would have been nice if they created some presentations for us to watch in addition to their closed meeting to keep us updated and make us part of things.

 

It's pretty clear from the discussions so far that the main issue is with the type A nonsense, not the stress. Stress is exertion, we all know it makes us worse. Type X personalities, however, is Meyers-Brigg level of pseudoscience. It's just not relevant and simply perpetuates old myths and lies.

Never privilege a lie. The issue of stress is well-accepted. Personality types are just vague nonsense. That's the only issue here, that it's privileging a lie as if it's relevant, when the relevant thing is simply exertion, whether it's labeled stress or otherwise.

 

I don't actually understand the justification for making meetings closed. I have never seen a need. The impression given is that the reason for keeping things closed is that patients might point out how slap-dash the presentations are. That seems something to be encouraged!

The simple reality is that the level of academic discussion about ME needs to be raised to something solid from the historical situation of flannel and hand-waving.

 

It's also off-putting reading JD reactions on Twitter when pwME, who have been gaslighted for decades, express their concerns concerning personality disorders et. being thrown around with zero evidence.

 

But we don’t say “negative physical stress” or “negative cognitive stress” so I see no reason why we should be saying “negative emotional stress” instead of just “emotional exertion” which can happen across the spectrum of emotions.

 

Mostly agree, especially with respect to presentations. But I don’t have any heartburn if they wanted to have closed brainstorming type sessions or if they are discussing a particular untested theoretical treatment that they didn’t want patients to trial on their own.

The flannel part must be a British-ism?

 

Having closed meetings makes sense to me. It gives them a chance to throw out ideas and have other people shoot them down if they are unsound. Our community has a tendency to grab onto ideas whether they have any basis or not. Everyone here could probably name a few.

A lot of our funding comes from private sources. One of the things that makes me very uncomfortable is funding grants without them being thoroughbred vetted. When people yell to just give a particular researcher funds without knowing the details of their proposals, I am not happy. A closed meeting give researchers a chance to criticize each other’s ideas without the community becoming angry that their favorite researcher is being mistreated.

I would like the research to move forward to the point where popularity is not a factor. And I’m not talking about any one researcher here - this has happened over and over again. We are desperate, and for good reason. But I believe that ideas being thoroughly questioned at a closed meeting will result in much better science being presented in open forums.

 

Ah

https://www.phrases.org.uk/bulletin_board/56/messages/708.html

 

I know a lot of people with ME over the years now (not thru ME groups etc but quite a number through working in a big org for example). Not one of them is type A.

I do exactly understand what type A is though - in my day it was mostly talked about in connection with driving and getting stressed by traffic etc (road rage in an extreme). Type A isn’t ‘clever people’, it isn’t ‘people who are conscientious in the workplace or can be depended on’, it’s not people ‘who never get a break because everyone else dumps work on them for various reasons including they get the job done’.

I do know there are big issues with citing personality because they are crap - only linked to debunked ideas like heart attack in v specific definitions - that are manipulated as something utterly different by laypersons. Laypersons who probably are type A elbows-outs in themselves that wouldn’t get ME (despite the yuppie flu myth) because as well as bolshy they are tramply and lazy when you see the reality close up. I’ve lived with, worked with and had best friends of that type. They put-upon others and are lazy unless it works for them. EDIT Timetables go around them. When they want to rest they get it. They also tend to say and think they are busier/do more than anyone but that’s because they can be constructivist and only see what works for them. Type A (psychology definition) isn’t what Janet Defoe seems to be thinking of - the plug away don’t complain push through even though body screaming (and even then it’s not that but the lack of ‘everyone leaving them alone when they need their rest’ type A might get because of their domineering style).
So yes all of that us an issue.

we’ve often had no leeway given to us our entire career and life then our own having to not be slackers like those not fighting bigotry and having to be good because we turn up late or get I’ll more than most gets twisted as if it’s US rather than the only option the world allows? Idiots.

 

I am afraid to say that I do not get that at all. Patients mostly grab on to ideas because they are oversold by researchers who have hyped weak results. It does not look as if the ME 'scientific community' has the rigour to point out weaknesses obvious to people in the wider community.

Science should always be based on open debate.

I have been involved in small research meetings throughout my working life. Often they are small simply because you have limited places on a budget but as soon as they are by invitation there is a strong tendency for lie minded researchers to club together. The result of that is the opposite of what we want - nobody criticises. A clique mythology comes to dominate the community - seeping into journals and peer review. Very unhealthy. It is precisely the way the BPS mythology came to dominate ME.

 

Can anyone think of any examples?

 

This is where it is interesting to bring up the topic of what a 'good brainstorming group' would include.

I think that I have an issue with those around me misinterpreting what is going on in my body with what they 'see' e.g. raging pain and spasms not being listless at all but quite actively focusing on getting through that have been described by others as 'you seemed listless' which shocked me.

I think that family members have a ringside seat in some ways to people's history but few will 'see it all' e.g. a child at school vs at home with a summary of the 'other place' isn't the same as being there as 'the person'. They are also - despite good intentions - 'conflicted' in some way with what they notice and remember and think when they look back.

Patients on the other hand find it hard to participate - so need the 'wholly respect' and approach of others in the group to 'seek to understand' and 'get how to adapt to getting the most from their brains' (which work, but communication needs to be at their pace).

Scientists - probably can prompt 'areas' or know systems and parts and draw diagrams etc.

But I really think it all needs to be iterative with the right people 'weighted correctly' at the right points - and not an 'got what I need from that input/interview now I go off and draw what I think it is'.

How that is achieved - it has to be discussions and diagrams with each person getting to do their adaptation on it (that bit doesn't feel right or line through something with a reason) and there needs to be back and forth - it's a worthy discussion, because it feels relevant.

 

Unless the presentation included the sentence "It used to be thought in some quarters that personality type was relevant, but that just turned out to be a load of ill-informed pseudoscientific abusive piffle", I really don't know what it's doing on the slide.

 

often also containing some element of 'telling the audience what they want to hear'. Used car salesmen often include a lot of 'flannel' in their spiel

 

Yes, researchers who present meaningless pseudo-scientific diagrams like this should be ashamed.

MBTI is valid than this stuff - the personality factors in MBTI has been shown statistically to represent same four main factors (in addition to neuroticism) as the "big five" type personality inventories. The main difference between MBTI and the big five is that personality testing has a unimodal distribution of the factors, rather than the (MB) hypothesised bimodal distribution - but modern practitioners (like David Kiersey) have already discarded that notion anyway. Yes some people largely overgeneralise or speculate about cognitions and behaviour based on MBTI types, but few pretend that such speculation is scientific.

 

No one gets everything right. Questions, question and more questions is the only way to reach a higher level of scientific rigor. Even the most brilliant scientists get things wrong. And with our disease, no one is a real expert. People with good intentions are wrong all the time. Dr. Bateman is someone with very good intentions, in my opinion, and would be perfectly happy to answer questions.