• 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, 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.

"Unrest" Documentary Reviews

Cheshire

Cheshire

Senior Member
Messages
1,129
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Cheshire said:
BMJ review:
Julian Sheather: Unrest

(Still wandering in the psychosomatic realm)
Click to expand...

I think this is actually good, on message, and encouraging as a BMJ contribution.

What I think he is saying is

1. When illnesses affect thinking, as in ME, there is nothing the person can 'do about it'. They have no choice to 'think the illness away'.

2. When people tell you they are suffering, we should stop and think, however unexplained their suffering might be.

So he is calling the BPS approach 'puerile', which is exactly what I would call it.

And for Unrest to get a review in BMJ, let alone one that is clearly sympathetic, seems to me a very big deal. Unrest might have ended up as a nice film about ME enjoyed by quite a lot of people with ME. Or it might have achieved more - and it is looking very much like more to me. Interested organisations that stretch way beyond ME are setting up showings. Maybe what we need next is for medical schools to organise showings - either through student societies or faculty. I have not seen it yet. I expect to find some of it hard work, but in a good way. I also expect to be impressed.
 
Esther12

Esther12

Senior Member
Messages
13,774
Jonathan Edwards said:
So he is calling the BPS approach 'puerile', which is exactly what I would call it.
Click to expand...

Do you think most readers of the BMJ will take it that way? Given the BMJ's past coverage I think it's more likely that they will take it as a criticism of patient's 'harassment' of psychological researchers?

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.
Click to expand...

I find that sort of thing irritating in a piece in the BMJ that fails to acknowledge the serious problems with the way the BMJ has addressed these issues. I think it will be a distraction from the problems with the way CFS has been treated and covered in the BMJ.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Esther12 said:
Do you think most readers of the BMJ will take it that way? Given the BMJ's past coverage I think it's more likely that they will take it as a criticism of patient's 'harassment' of psychological researchers?
Click to expand...

No, I can't actually read it that way. He is saying that the idea that people have a choice about being ill is puerile. The majority of BMJ readers will not be particularly aware of the harassment issue. Even if they have heard about it they will probably have forgotten.
 
Nielk

Nielk

Senior Member
Messages
6,970
The way I read he is saying is that regardless whether it is psychogenic or organic, the patient is suffering and this should be acknowledged.

In addition, he is saying its a falacy to say because it's in the mind, the patient can control it and therefore make it go away. Just as a biological disease can't be thought away, psychogenic ones can't either and the patient should not be held accountable.
 
Esther12

Esther12

Senior Member
Messages
13,774
Jonathan Edwards said:
No, I can't actually read it that way. He is saying that the idea that people have a choice about being ill is puerile. The majority of BMJ readers will not be particularly aware of the harassment issue. Even if they have heard about it they will probably have forgotten.
Click to expand...

Maybe. I still think my interpretation is more likely, but I expect I've read and re-read the BMJ's past coverage rather more closely than most of their readers, so I can't really know how they'd interpret it. I think Wessely would be happy with the review, and that alone makes me dislike it!
 
Cheesus

Cheesus

Senior Member
Messages
1,292
Location
UK
Jonathan Edwards said:
Maybe what we need next is for medical schools to organise showings - either through student societies or faculty. I have not seen it yet. I expect to find some of it hard work, but in a good way. I also expect to be impressed.
Click to expand...

There are community showings that anyone can organise. My mum is helping a local ME organisation to set one up in Newcastle, and Julia Newton will be taking a Q&A afterwards. They plan to advertise it in the medical school and encourage students/faculty to attend.

You are able to set up a screening at your own university if you wish:

https://www.unrest.film/host-a-screening/
 
Cheshire

Cheshire

Senior Member
Messages
1,129
Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them — But Doctors Still Don’t Take It Seriously

It’s hard to imagine that this kind of blatantly sexist psychologizing would fly in 2017. But ME/CFS paid a steep price for the accident of emerging in the midst of the eighties backlash against the feminist movement. Having largely concluded that ME/CFS must be a psychosomatic illness, the biomedical community didn’t see much reason to research it. In the nineties, the Health & Human Services inspector general found that CDC officials actually redirected millions of dollars allocated to their ME/CFS program to other projects — and then misled Congress about where the money went. The NIH, meanwhile, has devoted about as much research funding to ME/CFS as it does to hay fever. It is only since 2015 that it has started to reverse course, acknowledging that their attention to the disease has been inadequate.
Click to expand...

http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/
 
J

Jennifer J

Senior Member
Messages
997
Location
Southern California
A

anniekim

Senior Member
Messages
779
Location
U.K
slysaint said:
Once Dismissed And Hidden, Chronic Fatigue Patients Speak Up
Science Friday

article on Unrest
also [Our podcast, “Undiscovered,” digs into the treatment controversies over chronic fatigue syndrome.]

https://www.sciencefriday.com/segme...ten-hidden-chronic-fatigue-patients-speak-up/
Click to expand...

I thought it was a good interview and covered many important points. However, I noticed she skipped very briefly over the creation in the 1980's of CFS which - and does to this day - conflates harmfully the single and non specific symptom fatigue with the disease ME (many people with ME don't even have fatigue!) and made no mention of the government/CDC malfeasance involved. After the outbreak in Lake Tahoe she refers to people started to think it may be hysteria and the disease was reframed, no direct mention of CDC, just uses the word people. I suspect, but don't know of course, this may not have been due to time constraints but a deliberate decision to not focus on CDC's outrageous behaviour. Why is that? I don't know. She also wrongly says in the interview the idea of exercise as a treatment was on the back of the PACE trial which was only published in 2011. Yet we know Wessley and fellow adherents from both sides of the Atlantic were from the late 80's, long before the PACE trial, advocating exercise as they claimed patients were merely de conditioned and medical authorities promoted it without question, in collusion in fact by the creation of the political construct CFS, ignoring patients sharing it made them much worse.
 
MAOAr297r

MAOAr297r

Senior Member
Messages
113
Location
Seattle
Gingergrrl said:
I have not seen it but plan to when it comes to Los Angeles. I just checked the upcoming screening schedule and it looks like it is coming to No. CA at the end of May/beginning of June so am hoping maybe it will come down to So. CA after that (but have no idea)!
Click to expand...
I saw it this morning. It was very, very good! It brought me down a little though and brought some tears.
 
S

Solstice

Senior Member
Messages
641
Cheshire said:
The level of stupidity and viciousness of some "patients advocates" is appalling.
Jen Brea's film is starting to raise awarness to a level never reached till now.

https://twitter.com/i/web/status/918160503150542849
Click to expand...

I can just imagine who it is tbh. There's someone from NL that doesn't pass up any opportunity to spout the "ME is not CFS" line. And eventhough he's right, he does it in the most unhelpful fashion imaginable.
 
You must log in or register to reply here.