• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Jen Brea and Unrest make it into the BMJ as an opinion piece

Countrygirl

Senior Member
Messages
5,429
Location
UK
http://blogs.bmj.com/bmj/2017/10/04/julian-sheather-unrest/

Unrest is the film Jennifer Brea made about her condition. It is not an easy watch. She does not pull her punches. It takes us into the dark folds of a cruelly disabling condition. It is a defiant film though—not least because she makes it in dogged defiance of her condition. And it provokes ceaseless questions.

One that stayed with me is the long squabble between psychological and physical etiology. I get that to treat a condition it helps to know its cause. But what I don’t get is the insinuation—not from the filmmaker, but from some of the commentators—that if it is mental rather than physical, choice is involved. The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things. And the quicker we ditch that stale and exhausted canard the better.

Unrest also provokes philosophical questions about other minds. Because a devastating condition is not well-captured by current diagnostic possibilities, questions have arisen in the past about its reality. Is this suffering or elaborate malingering?


Julian Sheather, Specialist Adviser, Ethics and Human Rights at the BMA, says the film raises important issues for the medical community.
Quote:
"Unrest is heroic filmmaking. It takes a mysterious, stigmatized and invisible disorder and brings the condition and its sufferers into clear light. It is a tribute to the filmmaker and her extraordinary husband. And also a reminder, if we need it, that the world of human suffering has not been mapped in its entirety by medicine."
 
Messages
80
This is a good piece. Straight to the point.

I think it is interesting that the author seems almost surprised how people could still be caught up in 'mental equals completely controllable'-thinking, yet roughly 85% of the (obviously selectively biased by availability) sample of doctors I have seen do not even seem to question this type of thinking and accept it as axiomatic and true. I think intelligence plays a large role in this, because the easier and more thoroughly people were apparent to accept this connection the higher the probability of them making very questionable and unlogical medical decisions has been, at least from what I could verify afterwards.
 

Tom Kindlon

Senior Member
Messages
1,734
My comment wasn't posted. I'm not sure whether it's worthwhile rewriting it with a longer piece or not. Anyone else not have their comment posted?
It's hard to talk in general. But if one looks at the specifics, the cognitive behaviour therapy (CBT) and graded exercise therapy (GET) models for chronic fatigue syndrome (CFS) assume the disability and symptoms are reversible by counteracting supposed maladaptive beliefs and behaviours (see, for example, the PACE trial manuals (1)). It seems reasonable that patients would want to, or should be allowed to, challenge such a model which doesn't fit with the evidence. Also disability supports such as disability payments and aids can be turned down based on the belief that patients can recover with such therapies. And the data from the £5 million PACE Trial showed that neither therapy was associated with recovery (2).

Government research funding of CFS research in the UK has generally been based on assuming biomedical research is not needed as the condition is treatable with nonpharmacological interventions. This can be seen for example with the 2003 MRC Research Strategy for CFS/ME.There could have been research breakthroughs if it had not been assumed the condition was already treatable.


References:

(1) PACE Trial manuals for CBT and GET
http://www.wolfson.qmul.ac....

(2) Wilshire C, Kindlon T, Matthees A, McGrath S. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue. 2017 Jan 5:1-4.
 
Messages
80
Keith Geraghty is obviously on point with that, but is it realistic at this point in time to expect the bmj to publish something that really tackles the sheer amount of iatrogenic harm and abuse that has been going on in depth before the 'general public' of bmj readers have even caught up to the fact that the psychiatrization that is a mainstay of medical practice is a bad thing?

If one is coming off as too confrontational there is the problem with whatever was written being dismissed via emotional knee-jerk reactions by the very people that need to realize their entire field has been doing their job wrong for decades. Don't get me wrong, I want to see the culprits behind bars probably more so than most people on here, but to get that done I reckon we need a critical mass of people in psychiatry to realize that they are making their own field obsolete if they do not intend to clean up their act. This is not an easy thing to do because they have been making a lot of money by essentially delivering psychological violence to precisely the type of vulnerable people they are expected to help. Unless somehow actual oversight from outside the field can effectively be put into place, I do not know how blunt we can hope to be here, even if we are fully in the right.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Psychiatry has a very long history of patient abuse. They just seem to shake it off and move on to the next thing, ignoring what has gone before or, at best, implying it was just some "rogue practitioners".

There have been no apologies for giving massive amounts of ECT, the refrigerator mother theory of autism, or recovered memory therapy which destroyed families. It has gone on since the time of Freud.

I get angry when they talk about historic sexual abuse but no one mentions that at the time psychiatrists felt that the problem was provocative children and weak men, or for variety, it was either the mother's fault (for being absent by going to bingo, working being ill or dying (!)), the paternal grandmother or the maternal grandmother. Except for the feminist literature no one ever suggested it could be the fault of the men involved.

The psychiatrists will never clean up their own profession unless things change drastically.
 
Messages
13,774
Keith Geraghty is obviously on point with that, but is it realistic at this point in time to expect the bmj to publish something that really tackles the sheer amount of iatrogenic harm and abuse that has been going on in depth before the 'general public' of bmj readers have even caught up to the fact that the psychiatrization that is a mainstay of medical practice is a bad thing?

If one is coming off as too confrontational there is the problem with whatever was written being dismissed via emotional knee-jerk reactions by the very people that need to realize their entire field has been doing their job wrong for decades.

I agree that it's worth being aware of these sorts of issues, and doing what we can to present concerns as effectively as possible. It's probably good to have people responding in a range of way - many of those at the BMJ are just not going to be willing to recognise how badly they've got things wrong. It's going to be a long-term project to make progress, ideally with lots of people with slightly different values all doing good work to move things forward.
 

duncan

Senior Member
Messages
2,240
I agree that it's worth being aware of these sorts of issues, and doing what we can to present concerns as effectively as possible. It's probably good to have people responding in a range of way - many of those at the BMJ are just not going to be willing to recognise how badly they've got things wrong. It's going to be a long-term project to make progress, ideally with lots of people with slightly different values all doing good work to move things forward.

Super. Just as long as we are all agreed.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
Psychiatry has a very long history of patient abuse. They just seem to shake it off and move on to the next thing, ignoring what has gone before or, at best, implying it was just some "rogue practitioners".

There have been no apologies for giving massive amounts of ECT, the refrigerator mother theory of autism, or recovered memory therapy which destroyed families. It has gone on since the time of Freud.

I get angry when they talk about historic sexual abuse but no one mentions that at the time psychiatrists felt that the problem was provocative children and weak men, or for variety, it was either the mother's fault (for being absent by going to bingo, working being ill or dying (!)), the paternal grandmother or the maternal grandmother. Except for the feminist literature no one ever suggested it could be the fault of the men involved.

The psychiatrists will never clean up their own profession unless things change drastically.
I agree, even in recent history ECT and lobotomys were on the menu, as "heroic" treatments :bang-head::bang-head::cry::bang-head::bang-head:
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
But what I don’t get is the insinuation—not from the filmmaker, but from some of the commentators—that if it is mental rather than physical, choice is involved. The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things.
So is he saying that it is a mental condition, but we do not have control over it? :cautious:
 

anniekim

Senior Member
Messages
779
Location
U.K
Keith Geraghty is obviously on point with that, but is it realistic at this point in time to expect the bmj to publish something that really tackles the sheer amount of iatrogenic harm and abuse that has been going on in depth before the 'general public' of bmj readers have even caught up to the fact that the psychiatrization that is a mainstay of medical practice is a bad thing?

If one is coming off as too confrontational there is the problem with whatever was written being dismissed via emotional knee-jerk reactions by the very people that need to realize their entire field has been doing their job wrong for decades. Don't get me wrong, I want to see the culprits behind bars probably more so than most people on here, but to get that done I reckon we need a critical mass of people in psychiatry to realize that they are making their own field obsolete if they do not intend to clean up their act. This is not an easy thing to do because they have been making a lot of money by essentially delivering psychological violence to precisely the type of vulnerable people they are expected to help. Unless somehow actual oversight from outside the field can effectively be put into place, I do not know how blunt we can hope to be here, even if we are fully in the right.

Typing limited so forgive brevity. I think - if I have understood you correctly - you are conflating the issue of psychiatry as a whole and the particular issue of wrongly characterising ME as a behavioural condition. Stated well from an excellent piece in response to the BMJ article that Tom linked to above the idea that "ME/CFS is a post disease state perpetuated by an un-necessary adherence to a fear response cycle, which the patient adopted during an initial illness period (such as a virus), when activity led to harm." Link again here to short piece https://medium.com/@DondochakkaB/comment-in-response-to-julian-sheathers-blog-on-unrest-9997433fc8d9
 
Last edited:
Messages
80
I think - if I have understood you correctly - you are conflating the issue of psychiatry as a whole and the particular issue of wrongly characterising ME as a behavioural condition.

Hmm.. yeah, you're right about that I guess.

The way I read it the author of this piece wanted to say that it does not matter whether it is a mental thing or not, because that would not imply one would gain control over it. I think this is a really good point that needs to be understood by the general public, because the opposing sentiment is responsible for a lot of victim blaming.

It's hard to talk about all this stuff without always typing up an essay because the basic axioms of people are different. E.g. does depression qualify as a 'mental condition'? Because I don't actually think so if we are talking real, clinical depression which, as far as I understand, is a type of (or maybe even assortment of several) inflammatory brain illness. You can't make this go away by not thinking of yourself as a depressed person.

But it is very true that it would be better if we just had the medical field understand that none of this matters in ME anyway.

By the way, what Mithriel wrote may be the best list of reasons why psychiatry needs to be cleaned up that I have ever read. I cannot comprehend how it is not illegal to be this stupid in a professional capacity. I do not know of any other job where it is acceptable to not know what you are talking about and destroy your customers to this insane degree.
 

anniekim

Senior Member
Messages
779
Location
U.K
Thanks @Philipp. I agree the issue of labelling illnesses such as depression, schizophrenia and so on as not physical is ludricious. As is the idea that a person has control over a illness put in the mental health bracket. Mithriel is so right that psychiatry needs to be cleaned up and has done so much harm.

I just though think that as important as this topic is M.E doesn't even belong in the discussion.

Edit:

Just to add I meant I think the author of the BMJ piece muddied the waters by discussing the important topic of how mental health is viewed when discussing a film about M.E.
 
Last edited:

Tom Kindlon

Senior Member
Messages
1,734
My comment wasn't posted. I'm not sure whether it's worthwhile rewriting it with a longer piece or not. Anyone else not have their comment posted?
It's hard to talk in general. But if one looks at the specifics, the cognitive behaviour therapy (CBT) and graded exercise therapy (GET) models for chronic fatigue syndrome (CFS) assume the disability and symptoms are reversible by counteracting supposed maladaptive beliefs and behaviours (see, for example, the PACE trial manuals (1)). It seems reasonable that patients would want to, or should be allowed to, challenge such a model which doesn't fit with the evidence. Also disability supports such as disability payments and aids can be turned down based on the belief that patients can recover with such therapies. And the data from the £5 million PACE Trial showed that neither therapy was associated with recovery (2).

Government research funding of CFS research in the UK has generally been based on assuming biomedical research is not needed as the condition is treatable with nonpharmacological interventions. This can be seen for example with the 2003 MRC Research Strategy for CFS/ME.There could have been research breakthroughs if it had not been assumed the condition was already treatable.


References:

(1) PACE Trial manuals for CBT and GET
http://www.wolfson.qmul.ac....

(2) Wilshire C, Kindlon T, Matthees A, McGrath S. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue. 2017 Jan 5:1-4.
The comment has eventually been posted.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
The way I read it the author of this piece wanted to say that it does not matter whether it is a mental thing or not, because that would not imply one would gain control over it. I think this is a really good point that needs to be understood by the general public, because the opposing sentiment is responsible for a lot of victim blaming.
I think BPS try to sidestep this by maintaining that their treatment is behavioural and hence subject to material choice. If you remember, Crawley on R4's Today about SMILE was saying there is very little "abuse" (aka scrutiny) from patients and on the contrary "the majority of patients…want to get better" as though choosing to comply with treatment is the decisive factor.


(Edited to get quote right)
 
Last edited: