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Wild Horses - new film on ME/CFS is short listed for prize at Cannes Fi

Never Give Up

Collecting improvements, until there's a cure.
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971
The film maker, Rory A Stewart, has left these comments beneath the MEA website coverage of this story:

I am the filmmaker, I would just like to make a few things clearer; she is in recovery and has been housebound, but her mother has not allowed her out despite her improvements. The film is based off of my friend’s recovery (that because of over-exertion or bad luck ended in a very severe relapse that has returned her to a housebound state). I’m very sorry about some of the wording and interpretations of the press so far, I am relatively new to talking about my films to journalists.

I made this film because it breaks my heart that someone as creative and funny and intelligent as my friend is trapped by her own body, with an illness few people know or care about. She is a person with a fantastic sense of humour which is why I could not see this film as anything other than a comedy (with, of course, dramatic elements). The film is not a handbook for dealing with M.E., I cannot guarantee this film will change minds about or perfectly explain M.E.

It is a story about a young woman and her relationship with her mother. There are so many varying experiences of M.E. I cannot represent them all in one short film, only what I know from my own experiences around the illness. I can assure you she is not physically healthier by the end of the film, quite the opposite. As a sufferer of M.E. said to me today on Twitter “living life is a hard urge to resist”, and this is the character’s central problem, how to feel she is “living life” while still looking after her health. Her mother is overbearing and over-protective, but she isn’t wrong. There are of course such shades of grey lost in the interviews.

I can only apologise for the quote from the NFTS about mental illness, that is something I have already requested that they do not repeat and I have publicly disavowed. It was spoken out of an innocent lack of knowledge.

I hope this reply addresses some of the issues that may worry you.

thanks

MEA website news section: www.meassociation.org.uk
Well that was nice, and reassuring.

The trailer is worrying for all of the reasons mentioned above. Having said that, for the first 3 years of my son's home bound period he often said, "I just want to go somewhere." or, "Can we just go on a trip somewhere, anywhere?" He felt that in going somewhere he could escape his illness and misery, leave it at home and go back to the good place. He knew this was illogical, but couldn't shake this urge to escape by going somewhere else. This film's main character seems to have a bit of that urge in her, too. It looks like the main character is nutty, but that seems to be function of the writer/director's style, and if she does wind up more ill in the end, it may send send some important messages. I hope it's a good thing.
 
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33
Thank you Dr Shepherd for copying the statement from the filmmaker Rory A Stewart for me.
Still, I can't help it. This repetition of the meme, the overprotective mum, will hurt families with chronically sick children, despite good intentions. Maybe the film is much better than the trailer or the coverage in the Guardian, but who sees it?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
While Rory Stewart's response is somewhat reassuring it then leaves one with the impression that he is extremely naive.
This is still dangerous for people with ME.

As I think @sarah darwins pointed out earlier perhaps a short film doesn't get that much public exposure.

I wouldn't want BPS picking up on the idea we are harassing in any way -- but it is a concern how ME would be perceived -- there is a lot at stake for ME sufferers.

As a sufferer of M.E. said to me today on Twitter “living life is a hard urge to resist”,

Don't we all know it. It's doubly horrific when everyone thinks all you want to do is lay about.
 

PhoenixDown

Senior Member
Messages
454
Location
UK
Sky News said:
Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis (ME), is a disease which causes persistent fatigue and affects everyday life irrespective of sleep or rest.
Sounds like they are describing Chronic Fatigue not ME, no mention of PEM or getting worse after exercise.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
If the film ends with the daughter "riding off into the sunset" then I think it sends the wrong message. People do like a film with a happy ending and that makes me wonder where the film actually ends.

However, if it ends in a more true to life way (for a PWME) with the daughter relapsing and being forced to go back to her Mother and there is no acknowledgement that the Mother was right all a long then it's an awful attack on parents with ME children.

I can't quite see from Rory's statement which one it is.
 
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33
If the film ends with the daughter "riding off into the sunset" then I think it sends the wrong message. People do like a film with a happy ending and that makes me wonder where the film actually ends.

However, if it ends in a more true to life way (for a PWME) with the daughter relapsing and being forced to go back to her Mother and there is an acknowledgement that the Mother was right all a long then it's an awful attack on parents with ME children.

I can't quite see from Rory's statement which one it is.

My troubles are, that in the ME Modell for children from Chalder et friends, the fear of the mother will hinder the recovery of the child. If the child at the end relapses, the mother's worries will be to blame. So, with an end like this, the narrative of Chalder will be confirmed.

Don't mothers dream of their daughters and sons going out, meeting their friends, enjoying a day at the sea, riding bikes (or horses)...
 

Aurator

Senior Member
Messages
625
It's too early to come to any firm conclusions about the film's message and potential impact, but it does look very much like Rory missed a trick here. Giving prominence to a mother-daughter conflict and the daughter's desire for what she sees as independence is certainly a way of appealing to wide audience, given that the majority of people, whether or not they have any experience of chronic illness, can identify with the inherent tensions between protectiveness and independence in any parent/child relationship.

But a much bigger and deeper drama was there for him to exploit if he had chosen to: the drama of a mother having to fight to stop her daughter being taken away from her, and perhaps failing, of a whole family having to fight against uncomprehending healthcare, education and welfare systems that notionally exist to help people and yet have routinely dealt with children and families affected by ME in ways so autocratic and inhumane as to be scarcely imaginable in a "civilized" society.

The vast majority of people in a typical cinema audience will be blithely unaware of this dark side to the liberal society they are complacently grateful for living in. The real story of ME is a drama that could put paid to that complacency once and for all.
 
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2,087
It's too early to come to any firm conclusions about the film's message and potential impact, but it does look very much like Rory missed a trick here.

I think films are personal, and Rory decided to make a film in a way he wanted, about a mother daughter relationship.

That's it really, there are so many facets to life with ME that its impossible to even begin to tell all the possible stories.

I commend him for doing it in a way he wanted, and becasue I haven't seen the film I am not going to comment on it, nor am i going to be worried about something that will have zero impact on anything. Lets be honest more people will probably see Jen Brea's TED talk than this movie, and by all accounts that was a good talk.
 

Aurator

Senior Member
Messages
625
I think films are personal, and Rory decided to make a film in a way he wanted, about a mother daughter relationship.

That's it really, there are so many facets to life with ME that its impossible to even begin to tell all the possible stories.

I commend him for doing it in a way he wanted, and becasue I haven't seen the film I am not going to comment on it, nor am i going to be worried about something that will have zero impact on anything. Lets be honest more people will probably see Jen Brea's TED talk than this movie, and by all accounts that was a good talk.
I do understand the way artistic creativity works, yes; it's nothing more or less than an individual's response to the world he sees around him. The response may be perfectly valid but that doesn't automatically make it commendable.

Like you I have a realistic view that the film's impact on things will be negligible. That may well be a reason not to be "worried" about it, but it's scarcely a reason why we should not feel free to express our opinions about it.
 

ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
But a much bigger and deeper drama was there for him to exploit if he had chosen to: the drama of a mother having to fight to stop her daughter being taken away from her, and perhaps failing, of a whole family having to fight against uncomprehending healthcare, education and welfare systems that notionally exist to help people and yet have routinely dealt with children and families affected by ME in ways so autocratic and inhumane as to be scarcely imaginable in a "civilized" society.

But there wouldn't really be a place for that animated mini-horse in such a film would there? :rolleyes: It would be "too real life" for it to be "nice viewing" for an audience. I do agree with you though - and I'm frightened that it is trivialising the effect of severe ME. I'm housebound (though not severe by any measure) and there's no way I could get further than the other side of the road... Indeed it's questionable I'd make it that far. But as others have said, it's hard to judge without seeing the whole film.
 

justy

Donate Advocate Demonstrate
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5,524
Location
U.K
I think films are personal, and Rory decided to make a film in a way he wanted, about a mother daughter relationship.

That's it really, there are so many facets to life with ME that its impossible to even begin to tell all the possible stories.

I commend him for doing it in a way he wanted, and becasue I haven't seen the film I am not going to comment on it, nor am i going to be worried about something that will have zero impact on anything. Lets be honest more people will probably see Jen Brea's TED talk than this movie, and by all accounts that was a good talk.
I couldn't agree with this statement more. And I am grateful to Rory for the calm and considerate response that he made,

It is his creative process and it is possible/desirable for there to be films that have people with chronic illnesses in them being about more than just their illness.
Isnt it about time that film, TV, books etc represented disabled/sick people in lots of different situations and ways. Who are we to say what Rory should do? This is his experience of his friend. Why shouldn't she have a difficult relationship with her mother? why must an artist only create moralistic art that satisfies sufferers? Its not a documentary its a short film and I loved the mini horse and thought the trailer looked good.

Do PWME never have comic moments in their lives? Do we all get on with our mums? are none of us ever 'silly girls?' (boys excluded)
 

Revel

Senior Member
Messages
641
I am grateful to Rory for the calm and considerate response that he made,
Me, too, @justy.

I fear that we are on high alert, especially in the UK, with regard to anything that might negatively impact our situation and how we are perceived by the general public. I do feel somewhat reassured by Rory's response and hope that I get to see the film in full at some point.

I loved the mini horse
The mini horse reminded me of visiting my father in hospital, a few weeks before he passed away. He told me that he had spent the morning watching tiny dancing horses out in the corridor (I think it was due to the drugs that had been prescribed - but, who knows? ;)). It had cheered him up no end, and I will be forever grateful to them.
 
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I have nothing against the cute little horse, nothing against comic moments, even in films about chronically sick children. I understand fully the wish to just run away, to be silly, to push your luck - I know this dream well myself.

I also do not think, there is an automatic need to be moralistic when it comes to ME. But this film seems to be it anyway. Not only by the girl ending in worse shape than at the beginning, like the filmmaker is hinting in his statement, but also in bringing up the meme of the overprotective mother. This overprotective mother is for Chalder et friends (and a big part of the public) responsible for the child staying sick. So not a very ingenious plot.

Accusations of parents beeing the hinderance of the recovery of their children are very real in Germany and the UK. I.e. Parents are threatend to loose the custody of the child sick with ME, if it does not attend school regularly. There was some coverage on the abduction by state&psychiatrists of Carina Hansen from Dk at phoenix rising.

Have a look on this resource from the UK: http://www.tymestrust.org/pdfs/falseallegations.pdf

Hopefully my fears about this will turn out to be without a base. But the trailer, the article in the Guardian and the statement of the filmmaker do not reassure me.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
From what little information there was in the trailer, if I were a layperson, I would probably conclude the ME is a serious condition that can leave you in a pretty shit state of affairs. I think a hyperawareness of contentious issues can lead people in the ME community to see problems where there perhaps aren't any. We might be reading too much into it.

Beyond that, I generally agree with @BurnA's sentiment.
 

Orla

Senior Member
Messages
708
Location
Ireland
I think films are personal, and Rory decided to make a film in a way he wanted, about a mother daughter relationship.

That's it really, there are so many facets to life with ME that its impossible to even begin to tell all the possible stories.

I think this is missing the point of people's concerns entirely. No one expects on films (or story) to tell all possible stories, but do we really need that story told again [which I would argue is largely from the imagination of the BPS perspective on ME/CFS]? Yet more focus on "over-protective" mothers, holding back their children and "causing" them to be "housebound"?

The perception that poor parenting is a major problem in a child's ME severity is already a theme in the UK amongst some service providers in some areas [health and education]. I heard in the last few years that the problem of parents being falsely accused of abuse had increased, not decreased. I think even AYME recognised this?

I have seen parents in the UK speak of their relief when the child reaches adulthood, as the threat of enforced treatment or being taken into care (mostly) go away overnight. And look how sympathetic and knowledgeable doctors like Nigel Speight are treated (admiteddly he won his case in the end, but what a nightmare for him. No doctor is perfect but I have to say that I have never heard anything negative about Nigel Speight at all, from either a parent or any support group leaders who had contact with him, which is unusually good, so he certainly sounds above average).

Of course none of us have seen the film, so it is speculation at this point (speculation, however, based on information released by the film makers themselves). The film may well not give the impression that the mother is holding the daughter back in a bad way, but it sounds like this could be a central theme of the film. Or it sounds like people could be left with this impression, even if that was not the intent of the film. I hope not. The comedic element might make this viewed as a more light-hearted thing, so it might do less damage even if parts of it are bad, so that might be an advantage.

There is a chance the film gives the impression the mother was correct in being cautious. I hope so, but this might be too nuanced a view for the non-informed average viewer to pick-up on, unless it is really obvious.

I think there is an interesting story to be told about (any) severely disabled child's struggle for independence, when they are very physically dependent on the parent for care in a way that a healthy child is not, and when they are mostly stuck at home unable to participate in normal teenage activities. I think this would make for a very interesting theme in a book or film, and could be sensitively done (but the author would really need to be good to avoid giving the impression that the parent was the cause of the disability.). Yes some parents will get it wrong occassionally, just as patients will make some mistakes, but that is different from the parent being the main barrier to progress. It is a bit like people thinking disability benefits keeps people disabled, on the basis that the people in receipt of greater levels of benefits are sicker, or sicker for longer (ignoring the obvious point that only the sicker people are on these benefits in the first place). Now there is another "lovely" theme the BPS-school likes to promote.

People might find it easier to picture why some of us are worried about if they look at a different condition. Imagine if it was the 1960's and there was a short film on the theme of a refridgerator mother being the cause of the child's autism [this was a mainstream medical view then. I even saw a comment by a psychologist a few years ago, suggesting autism was caused by poor parenting, which made me think that this view might still be knocking around amongst some people working in the mental health field]. Do people think that a film on autism and refridgerator mothers causing autism would be helpful or harmful? Would people think it was ok for people with autism and their families to find it objectionable?

I think some people who are not minors, or do not have children with ME, are not understanding the constant stress some families are under from people thinking they are the problem and not the illness itself. This sort of view causes problems more generally, for adults also, but children with ME are particularly vulnerable to abuse from professionals. I do not have any children but have heard of problems in the UK and as I help run a patient group in another nearby country I am sometimes nervous that we could end up with similar problems for parents and children with ME as they do have there in terms of children being taken into care and put on enforced GET programmes.

Anyway I didn't mean to write such a long post, but wanted to try to get my point of view across as clearly as possibly. I know it is all speculation at this stage as I haven't seen the film yet. I hopefully will get to see it somehow to be able to see what I think of it myself. I'm in a film club and I dread people in it seeing a poor portrayal of ME, or even of disability in general (though the club i usually attend generally doesn't show shorts, except the occasional Irish one), and I also sometimes attend a local film festival which shows shorts so it might appear there. I live in a small place, and I would know a lot of people who attend the film festival, so people I know could see this, so I could end up having some frustrating "interesting" conversations as a result. But maybe the film will be good, who knows.
 
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2,087
I think this is missing the point of people's concerns entirely. No one expects on films (or story) to tell all possible stories, but do we really need that story told again [which I would argue is largely from the imagination of the BPS perspective on ME/CFS]? Yet more focus on "over-protective" mothers, holding back their children and "causing" them to be "housebound"?


But I'm not sure we have establised that it is that story have we?
I think there is a bit of a jump to get from overprotective to "causing them to be housebound".
Some people are making that leap now, others aren't, is probably a good summary of where we are on this thread.

My point was really in reply to aurator and how a community such as ours might see a movie as a great opportunity to tell the story we want, but the reality is directors choose to make movies for their personal reasons.


Concerns about movies can of course be valid when the facts are established, I think Rainman would be a good example, but that was a chartbuster starring Tom Cruise and Dustin Hoffman.
This is on the other end of the scale.

Having said all that, if anyone ever buys the rights to the book "It's all in your head" I'll be expressing my concerns immediately!
 
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2,391
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I'm worried this film will send mixed messages about the condition. Like a housebound patient that can apparently simply decide to not be housebound and run away from her overprotective mother (a stereotypical element in psych. models of pediatric ME/CFS).
That did strike me immediately as sending a mixed message. However, it will be the overall message left in people's minds that counts, and I imagine many films manage to achieve that even if the finer detail is flawed. Fingers crossed.
 

Orla

Senior Member
Messages
708
Location
Ireland
But I'm not sure we have establised that it is that story have we?
I think there is a bit of a jump to get from overprotective to "causing them to be housebound".
Some people are making that leap now, others aren't, is probably a good summary of where we are on this thread.

My point was really in reply to aurator and how a community such as ours might see a movie as a great opportunity to tell the story we want, but the reality is directors choose to make movies for their personal reasons.

Having said all that, if anyone ever buys the rights to the book "It's all in your head" I'll be expressing my concerns immediately!

We are all speculating to some degree until we see the film, but I am reacting to what has been put out in public by the director.

Regarding the first point I have highlighted in bold above, the director has said: "I am the filmmaker, I would just like to make a few things clearer; she is in recovery and has been housebound, but her mother has not allowed her out despite her improvements."

So effectively this child is being kept "housebound" unnecessarily by an over-protective (anxious?) mother. Not a great leap to conclude this from what has been said, unfortunately.

I wouldn't really care what story any writer or director chose to tell, so long as it wasn't harmful.

About your last comment "It's all in your head" , I'm afraid it has already been written,

It's All in Your Head: True Stories of Imaginary Illness, by Suzanne O'Sullivan.

ME features in a bad way.

I do think that sometimes a more subtle approach can be more dangerous though (where someone has an agenda). If someone is openly obnoxious, or prejudiced, or just saying non-credible things, it can sometimes be easier to argue against it, and show people the problems, but the person that can come across as well meaning and doing something for your own good can cause much more damage as it is harder to explain to someone else what is really going on. I don't think this filmmaker had any other agenda than to do an interesting story so I don't think this applies to him.