Review: Voices from the Shadows, British Library, London

A German version of this review can be found here.

Yesterday I finally got to see Voices from the Shadows, a documentary about severe ME produced and directed by the same people that produced the book, Lost Voices, (reviewed here) which told stories by a number of people with ME (mostly severe ME). This film, although including pictures that appeared in Lost Voices, concentrated on five people, all but one well-known to the ME community: Lynn Gilderdale, Naomi Whittingham, Linda Crowhurst and Sophia Mirza, as well as a young girl referred to only as “B”, who fell ill aged eight and is still severely affected at age 15. This is the last of four showings of the film, which previously showed in Norwich, at the Mill Valley film festival and at the IACFS/ME conference in September; the mother-and-son team behind it are currently looking at an American distribution prospect before considering a DVD or download release. (Other reviews: CFS Patient Advocate, Jenny K Rowbory’s dad, It’s Only ME …, Thoughts About ME.)

The film is principally about the abuse of ME patients, children and adults, in the medical and social services sectors; it is not a bio-pic of any particular sufferer, nor is it really about what it is like to have ME. Although a video appeal by Giles Meehan for the proposed ME research centre in Norwich was played before the film, the film itself did not cover the issue of research, or the lack of funding for it, or the question of which type of virus causes ME, or how ME came to be seen as a psychological rather than a physical illness. The emphasis was firmly on the mistreatment, the lack of availability of appropriate treatment, the devastating effects of graded exercise, the struggles (not always successful) to keep suffering relatives out of the hands of professionals who would impose it on them, and otherwise treat them harshly. The story of Sophia Mirza’s ME is wholly bound up with her sectioning and subsequent relapse and death and so it was included in her part of the story; by contrast, Lynn Gilderdale’s death was not described, which is no bad thing as the story has been told time and again in almost every media interview with her mother.

Having read three of the five sufferers’ stories elsewhere, I generally knew what was coming, so the film was not as hard-hitting for me as it might have been for others, and particularly for those with little or no familiarity with this subject. The exceptions were the section on Naomi, part of whose story is told in Lost Voices but the story of her treatment in hospital is not in the book; there was video footage in this film of her attempting the graded exercises, with the nurse telling her at one point that it would be as easy to walk to the chair at the other end of the table as to retreat to the one she had got up from — I kept wanting to say “don’t do it, Naomi!” — and the audio recording of Sophia Mirza’s attempts to put off being sectioned after police and social workers had broken her door down in 2003. She was heard trying to persuade them that she had in fact improved over six months (since her mother had been threatened that she would be sectioned if she did not get better) and pleading to be taken to an ME clinic instead, whereupon she was told that she had already had two opportunities to go to such a place.

The film described the devastating effects of graded exercise on several of the patients, as well as the negative influence of psychiatrists; Kay Gilderdale was shown saying that all their dealings with them were destructive, and they nearly killed Lynn. Naomi and her mother were both extensively interviewed (she was the only patient who could be interviewed), and they both recounted the terrible treatment she had received while in hospital, and the hostility she had encountered from nurses who worked their way down the ward, greeting the other children with smiles but “the mask slipped” when they got to her. There was footage, and her own description, of her life now; much of it spent either sitting and looking out of the window, which sometimes she loves doing but at other times makes her sad as it reminds her of what she is missing, or lying in bed, her bedroom darkened. This section of the film is really valuable, as someone is able to give a coherent description of what it is like to have severe ME for a long time, and it was very powerful.

Linda Crowhurst was too ill to be interviewed, but some video footage was shown of her saying she was in agony, desperate to use the loo but unable to be touched (and therefore moved) as it would cause her so much pain. Greg Crowhurst, her husband, described the extreme difficulty of finding anyone who believed in her illness enough to treat it; one psychologist told her she was simply “afraid of standing”. Professor Malcolm Hooper emphasised that ME was a physical illness with much in common with MS, not a psychiatric condition; Dr Nigel Speight, a paediatrician with a long history of dealing with children with ME, noted that doctors sometimes refer children with ME back to their GPs, or prescribe GET and become increasingly hostile to the children as the treatment produces the opposite of the intended effect. The story of “B”, who is fifteen and whose family still fear further intervention from social services, was told by a male voice-over who was not related to her; the story was illustrated by stills of her empty room changing with the time of day. She was taken from her family and put on a locked ward after her family resisted attempts to force her onto graded exercises; she eventually became bedridden (as she still was, at the time the film was made) and for a while lost the ability to speak. The family managed to extricate her from the care system by involving the Young ME Sufferers’ Trust, which had access to the experts who could demonstrate that her ME was a physical illness and could not be helped with the graded exercises being imposed on her.

In short, this was a very powerful documentary on this most pressing aspect of the ME situation. When I reviewed Kay Gilderdale’s book in April, I wrote:

What this is not is any kind of investigation as to how widespread the kinds of abuses Lynn suffered were, or are, and such a book is sorely needed and Lynn’s story would no doubt feature heavily in it. There have been countless stories since of people with ME, including severe ME, suffering because of the disbelief of doctors who insisted that their illness was being ‘encouraged’ or was the result of abuse, leading to children being removed from their families or threatened with such action.

While this documentary names no names in terms of who is responsible for the abuse (as, for example, a Panorama documentary in 1999 did) and does not mention the role of people like Simon Wessely, Peter White et al, or even what parts of the country the sufferers came from it does show that the abuse is widespread and has carried on long after it should have been obvious that the treatments they had been using did not work, and long after the scandals of the 1990s were exposed. One would hope that more people in the UK can see it, and particularly that it can be made available to those in the nursing and medical professions, and particularly students and those at a junior level as their minds are the most open to influence (there are quite a few junior doctors and GPs who have never heard of ME). I believe it needs a British audience much more than it needs an American one: the cases discussed are all of British people who lived in the UK and were treated in British hospitals. Much the same may happen in the USA, but the documentary does not show that (and does not mention anything of the history of “chronic fatigue syndrome” in the States) and we do not need Americans self-righteously pointing fingers as if this were typical of British healthcare, or “how the Brits treat the sick”, when a large percentage of Americans simply cannot afford healthcare of any sort, a state of affairs that is unlikely to change soon.

After the film, there was a discussion involving Dr Speight, Declan Carroll of the Irish ME Trust, and a Labour councillor on Camden Council (no more senior politician was available). The councillor talked a lot about disability in general, and I recall him saying that the council was doing nothing about ME, but called for “stupid legislation” such as the Disability Discrimination Act to be abolished and replaced with laws with more substance. As for Dr Speight, I most clearly remember his answer to one of my questions, namely why doctors and social workers were so vicious to patients with severe ME. He replied that the profession had changed considerably in the last 30 years ago, being much more open to patients’ opinions than it had been; in the past, doctors were paternalistic, convinced they knew best, and sometimes apt to lie to patients about their condition. However, ME remains one area where doctors still feel they can bully patients. He also mentioned that social workers deal often with very hostile families on council estates, some of whom set the dog on them, so when they are expected to deal with a quiet and pleasant middle-class family with a bed-bound daughter, they get a sense of power that they had been unable to access when dealing with their usual “clients”, and exercise it freely.

At the moment, there is no further opportunity to see this film; people in the ME community who were unable to get to either of the two screenings are clamouring for a DVD release, but the producers say they are “waiting to hear from an international distribution company”. I should add, though, that people with ME are not the best audience for this, and children with ME (let alone severe ME) should not be shown, as the producers have already advised — it will cause them an awful lot of distress. I should add that friends of people whose stories are featured in the film are unlikely to learn anything new from it that their friends haven’t already told them. Particularly in the light of the dreadful coverage of the “death threat” accusations last summer, those in the media should see this for their own education. It demonstrates amply who are the victims in this whole affair, and who, unlike their accusers, do not have the luxury of being able to flee to the alleged safety of Iraq or Afghanistan. They should be able to feel safe where they are: their homes, their beds, and when necessary, their local hospital. In the light of recent events elsewhere in the world, it has become the mark of a despotic regime that people are not safe in hospital — this is, in fact the case for some of our own sickest and most vulnerable people. It is not worthy of a civilised, advanced country like ours.

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  • Sheila_darbyshire

    For goodness sake someone - get the DVD out as soon as possible.  We can get copies to doctors all over the country and make a real difference to ME patients’ lives.

  • lilpink

    I appreciate the sentiment that the UK needs to access this film as quickly as possible, but from the impact perspective (and thus providing possible, if remote, chances of airing via a wider UK TV network) I personally think it’s worth waiting to see if the film can achieve an international distribution as it will put pressure on the ‘powers that be’ in the UK.  A domestic DVD distribution, whilst welcome for our own interest as patients, will be more ‘preaching to the choir’..when we now need to Evangelise.

  • Jeannette

    “Much the same may happen in the USA, but the documentary does not show that (and does not mention anything of the history of “chronic fatigue syndrome” in the States) and we do not need Americans self-righteously pointing fingers as if this were typical of British healthcare, or “how the Brits treat the sick”, when a large percentage of Americans simply cannot afford healthcare of any sort, a state of affairs that is unlikely to change soon.”

    Point very well taken. The health care system in the US is totally broken and is getting worse by the day. People are dying because they cannot afford to pay for treatment. 

    I do still think that with respect to ME, the state of affairs is much bleaker in the UK.  The same—incarceration of ME patients and forceful imposition of GET—may happen in the US (and in at least one case has happened), but I feel like the legal checks and balances and the threat of multi-million dollar lawsuits typically keep American patients safer on that front. Americans may not be able to afford any health care, but the danger of being robbed of their freedom just because they are sick with an un-pc illness seems much smaller than in the UK. When US advocates are outraged by the reality in the UK, they are coming from a supportive place, supportive of the patients. I am not getting a patronizing vibe here at all. But with the way Americans  are perceived worldwide, often deservedly so, I can understand the sentiment you expressed. 

    PS: I am a German citizen.

  • Shamankagirl

    I am 33 & have severe M.E. Im lucky with my GP who is always distraught that he can do nothing to help me when im in distress. He always does his best although he doesnt like to say ‘M.E’ he has diagnosed me as having such. The real problems lie with the benefits agency where you are treated with suspicion, scorn & sometimes contempt! Im in my 10th year of M.E & am now mostly bedbound. I used to be a semi professional singer and had a job working with autistic children that I absoloutely loved. My life now consists of a darkened bedroom, pill regimes & coping with a plethora of severe symptoms. We NEED help. Please!

  • Hi Matthew, as I mentioned to you before, not all the people in Voices from the Shadows want to be identified. We have give some people’s names in the film because they were willing to be identified to that degree. If someone only wanted to be identified by their first name it is more respectful and appreciative of their courage in being prepared to participate in helping others in this way, to just stick to the name they were willing to be identified by. As you know people with ME are very vulnerable and most do not want their full names spread around all over the internet. We have only given peoples surnames when they were willing to be named, so please will you respect the wishes of people who do not want to be named publicly. This is why I have again had to take your message about the film, which includes peoples names, off Facebook. 

  • Is there any name you particularly object to my mentioning, Natalie? The one that springs to mind is Naomi’s, and she has seen my review and did not object (and I asked her). The others are all well-known from news coverage, YouTube or other places (and all appeared by name in your book).

  • Steve Hinks

    Thev DVD is now available. I just hope that it convinces those involved in this shameful treatment of sufferers. Our own daughter has just been referred to a psychiatric unit 90 miles away.

  • Is your daughter the same one who was featured in one of the women’s magazines a few months ago, and whose aunt posted on the Severe ME book forum? (I think I recognise your surname.) I suggest contacting the Tymes Trust and enlist the help of a decent ME-friendly paediatrician. The TT have a good record of getting young ME sufferers out of the clutches of psychiatrists.

  • anonymous

    Nor do Americans appreciate socialist accusations that most Americans can’t afford healthcare. This is a lie propogated by statists who wish more and more control over people’s lives.