'Controversies and Cock-ups in ME research: The Role of Human Failings' - Prof Brian Hughes to speak at Sheffield ME & Fibro Group Conference

Gecko

Gecko

Senior Member (Voting Rights)
This Thursday 24th October:
Autumn conference, with guest speaker Professor Brian Hughes from 2:30pm

All welcome, or watch the livestream on Sheffield ME And Fibromyalgia Group's Facebook page: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/

Prof Brian Hughes is Professor of Psychology and a specialist in stress psychophysiology. He is a noted authority on how mental stress affects us physically and an entertaining speaker. Prof Hughes will also discuss how the ME community has been exposed to bad science and why that might be. He has titled his talk:
'Controversies and Cock-ups in ME research: The Role of Human Failings'

Venue: The Circle, 33 Rockingham Lane, Sheffield, S1 4FW
Doors open at 2pm. Talk commences at 2:30pm, with a break and buffet at around 3:30pm.

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I gotta say, it's pretty funny that his specialty is about how stress affects health and even he is like "hold up, that's clearly not at all what's happening here".

Good framing to highlight human failings. This is really the gist of what is happening, the same old problem of people being too sure of themselves and rejecting what evidence is telling them, no matter the consequences (to others, obviously).
 
rvallee said:
I gotta say, it's pretty funny that his specialty is about how stress affects health and even he is like "hold up, that's clearly not at all what's happening here".

Good framing to highlight human failings. This is really the gist of what is happening, the same old problem of people being too sure of themselves and rejecting what evidence is telling them, no matter the consequences (to others, obviously).
Click to expand...

that expertise in stress might make him just the right man, kind of. :)

i am pleased as always that brian is fighting our corner.


on the science, i want to say that stress, although not studied scientifically much yet, can profoundly affect m.e.

in fact, m.e. could, in principle, be described as significantly including intolerances. stressors to the system. a superset of pene/pem. [consider whitney dafoe, who cannot tolerate trying to read the letters on a shirt.]

of course it has nothing to do with magical causation woo [sympathetic magic], or circles and arrows to be used as "evidence" against us, just like all the constructed "evidence" on previous diseases.

... but instead everything to do with impacts on the body, which can include temperature, orthostasis, motion, light, noise, and much more. and yes, of course even stress from interpersonal conflict. and yes, of course exertion or activity.


as a member pointed out [forgive me as i forgot which of two] the nanoneedle might be measuring something like the effects of a cellular stressor. that might even correspond to intolerances.

in any case i do think m.e. intolerances need to be emphasized, studied, and accommodated, whatever word is used.


on the politics side, i want to say that, just as we don't know much about the science, we also don't know much about the politics. to me at least.

i would say that we don't know what occurs outside our current view...

... yet.


but most of all, i want to say thank you to brian. i deeply appreciate his work.

and to sheffield m.e. group. i hope it will go on youtube?


eta:

this post has apparently miscommunicated my point. here are links to try to make it more clear. they might make it less clear. for health reasons i cannot have a back and forth to clarify.

understanding:
https://www.s4me.info/threads/does-...-the-correct-focus-concept.6059/#post-188453/

focus concept:
https://www.s4me.info/threads/does-...t-exertion-is-the-correct-focus-concept.6059/

characterization:
http://thekafkapandemic.blogspot.com/2012/03/characterization-and-unaware-mild.html

accommodation:
https://www.s4me.info/posts/189563/
 
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Samuel said:
on the science, i want to say that stress, although not studied scientifically much yet, can profoundly affect m.e.
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My first thought would be that stress likely increases the body's energy demand rate requirements - increased heart rate, higher cognitive load, and many other things no doubt that my medical ignorance makes me unaware of. Inability to adequately meet otherwise-normal energy demand rate needs is, to me, something that characterizes ME.
 
Youtube version here:



Unfortunately it missed a couple of minutes in the middle, after which the video went out of focus and despite best effort we couldn't get it back, but you can still hear him clearly. We'll ask for his slides and upload those as soon as possible too. Q&A starting shortly!
 
I had never heard of (or don't recall) the therapeutic allegiance. Very interesting

Experimenter’s allegiance (EA) refers to a personal confidence of the superiority of a specific psychotherapy treatment. This factor has been linked with larger treatment effects in favor of the preferred treatment.
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Allegiance effect was even stronger where the experimenter was also both the developer of the preferred treatment and supervised or trained the therapists.
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https://annals-general-psychiatry.biomedcentral.com/articles/10.1186/s12991-015-0063-1

Thanks @Brian Hughes
 
Samuel said:
on the science, i want to say that stress, although not studied scientifically much yet, can profoundly affect m.e.
Click to expand...

I think that stress can profoundly affect just about everything and everyone, whether they are healthy or not.

My issue with discussions about stress is that it is usually discussed in the context of it being a mental health condition - that learning how to "cope" with it can be achieved by changing the way that people think. But in my opinion there are all sorts of treatable conditions that are never considered when discussing stress and how it affects people. Many of those treatable conditions revolve around nutrition and food.

I'll give two ways in which I have reduced my feelings of being stressed, anxious and/or depressed :

1) When my iron levels are low I feel very anxious. But the levels at which this happens are all within the massively wide reference ranges used by the NHS. So nowadays I treat my own iron levels to maintain them as close to optimal as I can. If I had gone to see a doctor about anxiety or depression or stress I would probably have been prescribed anti-depressants and possibly sent to Talking Therapies. I've taken SSRIs before, quite a long time ago now. I found them to be totally ineffective. I've also been sent to Talking Therapies a long time ago too, and that was a complete waste of my time and the therapist's time.

2) I reduced my feelings of stress, anxiety, and depression by changing my diet to include more fat and protein. If I go back to a sugary, starchy diet for even short periods of time I notice a pronounced decrease in my feelings of mental "wellness".
 
Samuel said:
on the science, i want to say that stress, although not studied scientifically much yet, can profoundly affect m.e.
Click to expand...

Or it could also be looked at in another way. My being ill with ME, considering the symptoms I experience as a result--they affect the way I respond to stress. In other words, to put it differently--if I were not sick with this my response to stress would be very different as a healthy person.
 
I don't think he said anything that has not already been discussed to death on this and other health sites . I would like to hear more about the incomes the chief investigators in this field have received for being professional illness deniers refusing insurance benefits to sick and vulnerable people . the judges who long ago decided that mental health illnesses could be treated differently to medically diagnosed physical illnesses started this race to make all illnesses disappear into the realms of mental health .
 
Thank you @Gecko for keeping us informed about the event, and @Brian Hughes for a very good talk. I managed to watch it all despite the video problems and thought it was a well constructed argument about how a small group of individuals, particularly in the UK, hold such sway over the narrative on ME and ME research.

[Edit to add - the talk was wider than this, with a well developed argument about the replication crisis and researcher alliegance to the outcome of trials leading to problems like non publication of null results, and over interpretation of outcomes etc]
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As I understood it, the subject of stress came up in a specific context not directly related to ME.

Brian was explaining about the difference between genuine biopsychosocial models and the fear avoidance and deconditioning model used for ME, which he said was not a BPS model, but a psychiatric model.

As an example of a genuinely biopsychosocial model, he gave his own research field of the effect of stress on heart disease.
 
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