People with Multiple Sclerosis

Condition, Challenges and Care

Paul J. Bull

• Publisher: Palgrave Macmillan
• Year: 2015
• Print ISBN: 9781137457059
• eBook ISBN: 9781137457066
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Multiple sclerosis is an incurable neurological disease of unknown cause with a fearful reputation for generating disability, unemployment, poverty and early death. This book critically surveys the current state of multiple sclerosis research, demonstrating the shortfall of current research undertaken on the lives of people with multiple sclerosis.

1

Introduction

1.1 Setting the scene

In March 2008, the London Times newspaper included a 12-page supplement on multiple sclerosis (MS) that painted a thoroughly depressing picture of living with the illness. It said that ‘people with MS are more likely to get divorced, lose their job, to end up in poverty, take their own lives, and to die on average five to ten years earlier than the general population. Living with a chronic long-term condition like MS without care or support is a recipe for becoming isolated, dependent on state benefits and – in the worse cases – written off by life’ (p.2). This publication coincided with the MS Society of Great Britain and Northern Ireland’s biennial MS Life conference that also included a stern reminder from the Cambridge neurologist Alasdair Coles of some of the less palatable aspects of having MS, especially lower life expectancy and lower income than expected accompanied by the almost inevitability of disability progression, in a presentation on MS ‘risks, placebos and myth busting’.¹ Was the prognosis of having MS really that dreadful? Could the information sources on which such dire assertions were based be believed?

The Times supplement went on to state (again on p.2) that there were ‘many hundreds of thousands of people across the United Kingdom (UK) living with MS.’ The strong implication of this phrase must be that many hundreds of thousands of people in the UK actually had MS. But, that was definitely wrong because the admittedly apocryphal and increasingly moribund official estimate of the number of people with the disease in the UK at that time was only 85,000, to be revised upwards to 100,000 in 2009. And, while there is a very good case to be made to suggest that even this latest total was too frugal, as shown in Chapter 5, it would not be underestimated by many hundreds of thousands. What may be true, however, was that there may be many hundreds of thousands of people in the UK closely related to the illness as relatives and friends of those with MS and as health professionals caring for people with MS (PwMS). Such a spectacular exaggeration for the apparent sake of hyperbole probably does not help the MS cause in any way but what it surely demonstrates is that the printed word may not always tell the truth about this condition. It may therefore always pay to be sceptical and cautious about what is said in print about MS. The published record had definitely been wrong once about the PwMS in the UK so perhaps it could have been wrong on other occasions too especially about some of the worst implications of having the illness. This book is an attempt to find out.

Two years later, in August 2010, the doom and gloom rhetoric about MS in the press continued with, for example, another supplement on MS in the Independent newspaper this time offering the thoughts of the Chief Executive of the MS Trust, one of the UK’s main MS charities, stating that ‘the sad facts are that a diagnosis of MS can impact on many life plans. 50 per cent of people with MS will be out of work within 5 years of diagnosis; 75 per cent of married people with MS get divorced and many people put off having a family for fear of not being able to cope.’ Now, it may be justifiable to give such grim statistics in the context of trying to raise awareness, sympathy and thereby charitable funds for the MS cause, but to present them as if they were the immutable consequences of the natural history of the disease was going too far. Whether a person with MS loses their job or lives in poverty is not just a function of their neurological disease but, probably more importantly, is also a function of the way in which their society treats them. For example, a disabled person need not necessarily be unemployed if their society offers them the appropriate support and encouragement in the work place. And, the same argument applies to poverty, physical isolation and many other elements of people’s lives too, all of which can be encompassed within the well-known ‘social model of disability’ (Oliver 1996), that a society through the creation of systematic barriers and negative attitudes can be held responsible for the limits to activity (disability) experienced by its impaired citizens. In other words, people are disabled just as much by the society in which they live as by their own bodies. What is more, societies in different parts of the world differ hugely in their attitudes and behaviours and to assume otherwise is naïve. Thus, it may possibly be true that in the recent past in say North America (Glantz et al. 2009, Julian et al. 2008) or Denmark (Pfleger et al. 2010a and 2010b), where significant research has been undertaken in this area, PwMS had a higher rate of unemployment, divorce or even suicide than their national averages, it does not necessarily imply that they should also be true for the UK. To demonstrate that reliable British evidence would need to be presented.

In her writing for the Independent, the Chief Executive of the MS Trust went on to advise that PwMS should ‘Be wary and don’t believe everything you hear or read about MS – you may end up frightening yourself or find people dealing in false hope.’ It would appear that such sagely comment should be applied to what she had just reported too. Indeed, as Rose et al. (2000, 22) counsel in their ‘MS at your Fingertips’, PwMS should be careful not to be misled by newspaper and TV reports. More importantly though, these observations help to raise the more general question: what do we really know about PwMS in, for example, their numbers, demographic characteristics, geography, state of health, access to health care, quality of life and what level of certainty can be placed on what is published about them; what can be trusted? This book is an attempt to answer these questions with particular emphasis on PwMS in the UK. Unfortunately, because of space limitations it is not possible to treat the other major MS nations of the world in as much detail as the UK. However, what will be possible is to place the UK evidence in the context of broader international trends in the MS world; a comparative analysis to improve our understanding of the UK case that may provide a template for similar analyses in other nations.

1.2 Sources of evidence

The evidence used in this book comes primarily from a range of different published sources, books, magazines and mainly academic journal articles, but also from the Internet. It is important to note that the quality assurances that can be given for these different sources vary enormously. For the latter, the Internet, no assurance can be given what-so-ever on the veracity of the material available (Cooke 2001). Any individual or organisation can set up an attractive, authoritatively looking website on this medium and make virtually any claims they wish with little chance of sanction. Any material gleaned from this source must therefore be treated with extreme caution, subject to the most vigorous scrutiny and only accepted as valid if other corroboration is available.

The most reliable evidence in theory used in this analysis should come from peer-reviewed academic journal articles. Here the editorial process should help guarantee a publication’s worth because it will include experts in the field judging the work’s quality, competence and suitability for publication. Such a process is expected to eliminate clear errors of method, bias and interpretation. As the epidemiologist Bhopal (2002, 281) noted, ‘There is a widespread view that only work that has passed the scrutiny of peers is reliable and trustworthy.’ In addition, where the research has needed the collection of personal evidence including medical records the work will initially have had to have received the sanction of a local research ethics committee and then include a statement of the authors’ conflicts of interest; both helpful indicators of research competence and integrity.

Although peer review may be the best way of achieving reliable worthy publishing so far developed, it is far from infallible. Indeed, as shown in this volume, much of the published research on the lives of PwMS in the UK suffers from problems of method, available data options and interpretation that limit its value. Thus, it would not be true to say that all errors are avoided in the academic publishing process. Nor would it be true to say that all defensible research work is accepted for publication. There are many reasons why unreasonable judgements can be made. Some degree of bias on the part of reviewers and editors is unavoidable, but this is probably a relatively benign influence. It is also possible for genuine mistakes to be made even in the best organised system of review when very busy people are working to tight deadlines. More pernicious reasons exist, however, to include the deliberate suppression by powerful individuals and organisations of material that challenges their views and practices. This may be less of an issue in the social sciences than in medical science where, for commercial reasons, a pharmaceutical company may refuse to release results or deliberately delay their release, as has certainly occurred relating to research on drugs for MS.²

In terms of all published work, be it formal research journals, specialist magazines, trade journals or books, it is not just the editorial function that is crucial for its credibility, it is also important to ask why a particular publication exists and whose interests it serves. It can be argued that a research journal, for example, exists to further the advancement of knowledge and understanding in a particular area of inquiry. In such a situation it would be the quality of the original research and the thoroughness of the editorial process that determines information quality and integrity. However, even here such apparent benign altruism is superficial. Most academic journals are profitable commercial operations for their publishers and if they were not they would not exist. Furthermore, a journal’s economic success can be best achieved by securing a high impact factor or citation index in its field that in turn is secured by getting the best research and researchers to publish in that journal. At the same time the researchers themselves need to publish in academic journals to advance their careers and the higher the journal is ranked the better it will be for them. Nevertheless, for relatively inexperienced academic researchers, there can often be a trade-off between the chances of getting published and the impact rating of the journal with a lower ranked journal sometimes being chosen to improve their chances of publication. Thus, it is not always the case that the most important, original and ground-breaking work is published in the ‘top’ ranked journals.

It is important to realise at this point that research is not just a simple iterative process in which finding X leads on to finding Y within a community of cooperative scientists, even if that may be the long-term logic behind it. Research is a social process too involving personal relationships with all the usual personality clashes, egos and petty rivalries imaginable. Such obstacles to the smooth progress of knowledge are rarely aired in print except perhaps in the memoirs and diaries of retired luminaries. It was therefore both unexpected and revealing to note in a review paper on MS incidence and prevalence the following observation by Zivadinov and colleagues (2003, 71) after managing to secure original data from only approximately 20 per cent of the authors of more than 90 studies: ‘There were various reasons, such as no response, no availability of the original data, or no collaboration if not included in the authorship.’ The latter bares testament to the pressure to publish in today’s academic world along with the time pressures many researchers experience, and while the former may represent simple bad manners collectively they symbolise the often fragmented, isolated dysfunctional professional and social worlds of much of today’s research community.

In a similar way books serve two clear interests, a commercial one and the ambitions and goals of their authors. They must be read cautiously with the latter in mind that should have been made clear at the beginning of the volume. Nevertheless, to get on a library shelf a book will normally have passed through a number of different quality assessments: the authors themselves, an editor or editorial board, a publisher and their reviewers and then the librarian or library committee. At each stage, different quality and suitability criteria will need to be met before a book will be accepted. By contrast, trade journals and some magazines may serve only a commercial interest that could make their evidence and opinions of questionable worth.

The charity sector forms another important element of the publishing world involved in providing material both for and on the MS community in the UK. It involves three main charities with a national reach: The MS Society of Great Britain and Northern Ireland (now the MS Society), The MS Trust and the smaller MS Resource Centre (now MS-UK). In addition, Northern Ireland has its own Action MS regional charity, the Federation of MS Therapy Centres offers material on its particular interventions and many MS Society branches produce their own local newsletters. The three main charities produce two very different forms of publication. First, they publish a large range of factsheets on many aspects of the MS condition and specific therapies for use by PwMS, the people who care for them and related health professionals. These often can be downloaded online or ordered in hard copy and have usually been compiled by recognised experts. The high quality of such material provided by both the MS Society and the MS Trust has been recognised by the award of The Information Standard. This means that they have persuaded the independent operators of this scheme, Capita, that the processes and systems used to produce their information publications are accurate, impartial, balanced, evidence-based, accessible and well-written (The Information Standard website).

The MS Society, the MS Trust and MS-UK also publish magazines. The former publishes MS Matters six times a year and MS Research Matters twice a year for which both an editor and editorial boards exist that at least for MS Matters is clearly stated on page 2 along with the standard disclaimer: ‘Articles signed by the authors represent their views rather than those of the MS Society’. For the MS Trust’s quarterly Open Door magazine no such statement exists, and it therefore remains formally unclear how and who makes decisions on the inclusion of written material. For MS-UK the New Pathways Magazine is produced every other month.

For MS professionals and researchers, the MS Society produces an MS Network Newsletter three times a year, guided by an 11-strong editorial board of MS professionals, along with online and hard copy library access facilities. Similarly the MS Trust publishes a quarterly Way Ahead Newsletter and a regular Information Update listing important yet difficult to access journal articles. The MS Network and Way Ahead newsletters usually include short research-based articles but in the latter it is not clear how they are judged for inclusion. And, because no peer-review function may have taken place, they must be treated with appropriate prudence.

The MS-UK’s New Pathways is different from the magazines of the other two charities. It begins inauspiciously with the statement: ‘New Pathways and its publishers do not guarantee the accuracy of statements made by contributors or advertisers or accept responsibility for any statement which they express in this publication.’ This means that anything published in this magazine cannot be directly accepted as true; it must first be corroborated by other evidence. The enthusiast for this publication would probably defend its disclaimer by suggesting that it simply does not have the resources thoroughly to scrutinise everything it might publish and, such a position is a price worth paying for the magazine’s varied exposure of different forms of therapies and experiences that the MS public would otherwise never encounter. Indeed, they would probably go further to praise New Pathways’ editors for their candour. Their critics, however, would argue that such a disclaimer gives New Pathways carte blanche for irresponsible publishing, stressing that it is wrong to raise false hopes among the MS community for new therapies that may ultimately prove impotent. After all, it is worth remembering that the history of MS has been regularly punctuated by the trumpeting of new ‘wonder’ therapies that have not worked (Murray 2005). In general, therefore, the concern with New Pathways would be that it relies too much on anecdote and personal testament and that such a standard of evidence is not rigorous enough to lead to safe therapeutic practice. Instead they would argue that the only way it is possible to know if anything truly makes a difference to disease progression or symptom relief is through scientific scrutiny and experiment, usually necessitating some form of clinical trial. To suggest otherwise is both odious and irresponsible; the peddling of false hope as psychologically destructive as the prescribing of ineffective drugs.

There will be no attempt here to resolve this debate other than to suggest that it raises a fundamental conundrum of MS set firmly in the context of a therapeutic vacuum. On the one hand there are elements of the MS media including New Pathways that present tempting accounts of therapies that appear to have helped alleviate the symptoms of some PwMS that have no formal medical approval. Should PwMS try such therapies especially when formally licensed drugs are either ineffectual or non-existent? On the other hand, the medical establishment will advise PwMS for their own safety only to use properly tested and licensed therapeutic regimens. But, can PwMS, and especially those having a difficult time with their illness, be expected to wait years, if not decades, for the treatments they need to be developed and tested? In many cases the risks of getting some relief from their suffering now by trying an inform...

Table of contents

• Cover
• Title
• 1  Introduction
• 2  Multiple Sclerosis: A Brief Overview of the Illness
• 3  Research on People with MS: Definitions, Data Sources and Methodologies
• 4  What Type of Person Suffers from MS?
• 5  How Many People Have MS? A Case Study of the UK
• 6  The Impact of MS
• 7  The Care of People with MS
• 8  Conclusion
• Notes
• References
• Index