Edward Shorter to give talk on CFS at NIH

[alex3619]

but isn't for example smoking a behavioural cause (simplified) of lung cancer?

No. Too much is left out in the simplified part. Smoking is the behaviour, but tobacco smoke plus additives are the actual cause. Risk is part of behaviour, but calling smoking behaviour the cause is too much of a stretch. Its the smoke itself that contains the carcinogens.

behavioural risk factors

Sharing salt in traditional Middle Eastern meals, where people dip into the salt bowl, is a risk modifying behaviour for peptic ulcers. The actual cause is H. pylori. Similarly the finger has been pointed at refined wheat flour, but I wouldn't want to call that a cause either, only a risk factor.

Blurring the terminology of risk and cause do not bring clarity.

Take ME triggers, like an enterovirus. Mingling with people is a risk factor. A hermit is not likely to be at much risk. Yet the infection is not the behaviour, its from the virus. Yet we can also talk about other risks, like co-morbidities, fitness, diet, etc. etc. Such discussion is about context and the landscape, but its confusing to start talking about whether someone eats an apple a day as a cause of a serious viral infection. Its better to talk of risk factors.

What the psychogenic/BPS people do is blur the lines and definitions. The more blurred things get, the easier it is to persuade people of their point of view.

Biopsychosocial/environmental issues have a place in science, and medicine, but not the place the psychogenic proponents are pushing it.

 

[dyfalbarhau]

No. Too much is left out in the simplified part. Smoking is the behaviour, but tobacco smoke plus additives are the actual cause. Risk is part of behaviour, but calling smoking behaviour the cause is too much of a stretch. Its the smoke itself that contains the carcinogens.



Sharing salt in traditional Middle Eastern meals, where people dip into the salt bowl, is a risk modifying behaviour for peptic ulcers. The actual cause is H. pylori. Similarly the finger has been pointed at refined wheat flour, but I wouldn't want to call that a cause either, only a risk factor.

Blurring the terminology of risk and cause do not bring clarity.

Take ME triggers, like an enterovirus. Mingling with people is a risk factor. A hermit is not likely to be at much risk. Yet the infection is not the behaviour, its from the virus. Yet we can also talk about other risks, like co-morbidities, fitness, diet, etc. etc. Such discussion is about context and the landscape, but its confusing to start talking about whether someone eats an apple a day as a cause of a serious viral infection. Its better to talk of risk factors.

What the psychogenic/BPS people do is blur the lines and definitions. The more blurred things get, the easier it is to persuade people of their point of view.

Biopsychosocial/environmental issues have a place in science, and medicine, but not the place the psychogenic proponents are pushing it.

I agree with you that context is important. In the context of NINR's goals and aims, the use of "behavioural" is not necessarily inappropriate because there are many situations where it would be appropriate to classify something as a "behavioural" factor in disease, and there are legitimate reasons to require 'culturally tailored interventions'..That description of their work is probably a much simplified version of what they believe they do, intended for a more or less lay audience. From what I understand that phrasing isn't unique to their work in ME/CFS, it's a general statement about what its goals are as an organisation, and whilst it could and probably does indicate in this instance some receptivity to the BPS ideas on ME/CFS (given their invitation to Edward Shorter to speak), you can't infer that from the description of their work alone.

Otherwise, I think we basically agree.

 

[Nielk]

The non-response from all NIH representatives who have been approached and written to by the ME communities expressing outrage and demanding cancelation of Shorter's lecture is unforgiveae.

Shorter's lecture (If it went in as scheduled)is over.

 

[alex3619]

The problem that inevitably arises with heavily overladen words in this kind of context, like behaviour and culture, is that lines of meaning are crossed and recrossed again and again and its very hard to spot. Two separate statements about culture or behaviour might easily have nothing to do with each other.

I have some limited background in organizational psychology, and in that they talk of organizational culture and behaviour but its very context dependent.

 

[mango]

https://twitter.com/i/web/status/796211962061422592

 

[Kati]

A patient attended Dr Shorter's presentation:

 

[Nielk]

@Kati - I saw that on FB. How was Loetta able to attend? I thought patients were not allowed?

 

[Esther12]

A patient attended Dr Shorter's presentation:

Very grateful to all patients who go to things like this and provide us with information on what's going on behind closed doors. All the better that it seems she was able to calmly give a patient's view of things... knowing what Shorter comes out with, very impressive to not be raging!

 

[Denise]

[/QUOTE]

@Kati - How was Loetta able to attend? I thought patients were not allowed?

I was just going to ask the same question because I too had understood that patients were not allowed to attend.....

 

[Kati]

I was just going to ask the same question because I too had understood that patients were not allowed to attend.....

@Denise @Nielk
I do not know. I am simply sharing the message and seemingly so is Pandora.

 

[Kati]

I am very glad that Loetta was able to stand up and say something. Thank you Loetta. Looking forward to hear more.

 

[Denise]

@Denise @Nielk
I do not know. I am simply sharing the message and seemingly so is Pandora.

I appreciate your sharing this @Kati!
I just wish we had known that advocates/patients would attend this meeting as I believe several might have also wanted to be there. But in at least a couple of places I saw that the meeting was not open to the public. So this raises some questions.
Who was given correct info on who could attend?
and
Why was contradictory info also given out?

Edit to correct
I just wish we had known that advocates/patients could attend this meeting

 

[Kati]

I appreciate your sharing this @Kati!
I just wish we had known that advocates/patients would attend this meeting as I believe several might have also wanted to be there. But in at least a couple of places I saw that the meeting was not open to the public. So this raises some questions.
Who was given correct info on who could attend?
and
Why was contradictory info also given out?

Good questions. I wonder if it is at all possible that Loetta already has a foot inside NIH, allowing her to attend and to get access to the memo?

 

[BurnA]

Good questions. I wonder if it is at all possible that Loetta already has a foot at NIH, allowing her to attend and to get access to the memo?

its not clear from the post whether Lolly attended NIH because she was already invited or not,
it justs read a bit odd the way it says "someone wanted you to have this information"
surely if you were invited to a lecture then of course someone would want you to know when and where it was on, why would this need to be stated, or why is it reported as if it was a clandestine operation from deep within NIH ? A little bit odd.


As to why, maybe the NIH decided it would be better to have a patient in there than not, so at least a first hand report might emerge to patients. Who knows.

 

[dreampop]

I don't think it's comforting or excusable that the talk went on as planned. While I'm glad a patient advocate attended, she did not have the time to prepare her rebuttal to Shorter. I'd like to hear more about that conversation with Walitt because he invited Shorter, he wrote that he thinks CFS is conversion disorder and now he wants to be a liaison? Sorry, but I suspect his behavior as disingenuous. Then we have Koroshetz, Collins and Nath who allowed this to go on with a universal plea from CFS researchers and patients to cancel it. I don't think we can pretend nothing just happened here. It was a statement of how the NIH really feel. CFS is not a priority, it is not worth the 'trouble' of canceling a meeting over, patients and researchers voices are not heard(or not respected) and Walitt has huge control over the special interest group.

 

[dreampop]

Why give her a note the day of? Like, no idea to prepare or know what's going and then find yourself in a shorter lecture? They had all week to invite a patient advocate so she could research shorter and prepare her statements. I'm sure she did great anyway but it's pretty unfair.

Edit: reading the comment below, it looks like it wasn't even the special interest group or the working groups concession to have a patient advocate there.

 

[Forbin]

It sounds like she was visiting the NIH for a completely different reason. Given the fact that she suffers from ME/CFS, she might be connected to the study in some way, possibly as a patient. She was given the note by a "patient liaison."

My guess is that there is no one screening people at the door of such a talk. If you're there, and you know about it, you might well be able to walk in and grab a seat.

It's a little curious that a "Dr. W." (hmmm...) was so solicitous afterward. I wonder who made her aware of the meeting. "Dr. W."?

 

[Woolie]

No. Too much is left out in the simplified part. Smoking is the behaviour, but tobacco smoke plus additives are the actual cause. Risk is part of behaviour, but calling smoking behaviour the cause is too much of a stretch. Its the smoke itself that contains the carcinogens.

Nice, @alex3619!

Some call this proximal vs. distal causes. When you are run over by a bus and die the cause is usually major damage to your vital organs due to impact trauma. That's the proximal cause. A possible distal cause - things that could contribute to the preconditions for this to happen in the first place - is not looking both ways when you cross the road. But you can't say that not looking both ways on the road causes your vital organs to be damaged.

Not that @dyfalbarhau doesn't have a point too. I understand what they mean.

 

[Sing]

So, I gather we are waiting to hear more from Loetta (Lolly) Vann....

 

[alex3619]

Some call this proximal vs. distal causes.

Yes, proximal versus distal causes was something I considered in my reply. However it becomes arbitrary as to where you draw the line. Ultimately its all the fault, depending on what version of reality you ascribe to, of either the Big Bang or God, though they are not mutually exclusive. As you go further back in events, each event has less and less causative attribution, but more and more events share a smaller and smaller causative role. I like to draw a distinction between risk and cause as it stops thinking about it becoming muddled. By the way, I also considered the run over by a bus argument, its a classic for this kind of thing.

I have a blog not even fully outlined on rethinking BPS. BPS that makes sense and BPS that is often argued about are sometimes not at all the same. PACE exemplifies almost everything that can go wrong with BPS thinking.