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

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.

 

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).

 

Brian Hughes and buffet included!

That sounds like a recipe for succes. Whish I could be there.

 

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/

 

The Sheffield group gets excellent speakers and does a lot of very good work.

 

Yup, I'll upload it to the group's YouTube channel afterwards.

 

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.

 

Bump - starts at 2:30pm today. Will post link to livestream when it goes live.

 

Starting now! Watch the livestream of Professor Brian Hughes talk on Facebook here:

 

If anyone has any questions for Brian, I can get them to be asked in the Q&A session after his talk if you post here before about 3:45pm.

 

Youtube version here:

https://www.youtube.com/watch?v=NgMYNKE2wes

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!

 

Q&A on now:

 

Aaaand Q&A up on YouTube too:

https://www.youtube.com/watch?v=zSJQxbxLxBY

 

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".

 

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 .

 

Sorry, Samuel, I didn't realise the situation you were in. I hope everything goes okay for you tomorrow.

Please be aware that I wasn't having a go at you in any way at all.