Comment by sociologist, Angela Kennedy, published in response to paper: ‘The self-expressed needs of people with CFS/ME: a systematic review”
In March 2006, Action for M.E. were awarded over £500,000 by the Big Lottery Fund to establish a National ME Observatory. Last month, Open Access Publisher, BioMedCentral, published the first paper to appear in the peer-reviewed scientific literature out of the ME Observatory.
The Observatory Steering and Management Groups are charged with the oversight of six projects:
1. Health and Social Services
2. Treating People with M.E
3. National Disease Register
4. Occurrence and Severity of M.E
5. Quality of Life
6. Literature Review and Services Database
As part of the Observatory’s Year One Tasks, Action for M.E. agreed with the Big Lottery Fund that a website would be created for the purpose of publishing information about the business of the Observatory. This dedicated website has failed to materialise, although a sum of £2000 had been projected within the overall funding proposal costings specifically for the creation of “an internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders.”
Instead, Action for M.E. carries some limited information on the National Observatory hosted on its own web pages.
The Observatory completes its third year of operation in April
Additionally, Action for M.E. has failed to set out lines of accountability for those responsible for the management of the Observatory Project and for the oversight of the spending of £500,000 of public money and make these available to its membership and to the wider public, either via a dedicated website, via web pages on its own website or through any other means; the names of those who sit on the Observatory Steering and Management Groups are not available on Action for M.E.’s website and have not been published in its magazine, InterAction – with only the names of the five lay members of the Steering Group and the members of the Reference Group being published.
(For a list of members of the Steering Group, Management Group, Reference Group and Others involved in the project see the end of this ME agenda posting from October 2008.)
No channel of communication exists between the Project’s management and the public. No information is available online about the progress of the various epidemiological research studies being undertaken, patient literature, study participant questionnaires, methods etc.
Therefore, the operation of the Observatory, those responsible for it and the progress of the research studies being undertaken through it cannot be monitored by the public because this information is not available for public scrutiny.
Drachler MD, Leite JC, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E, Campion P, Killett A, McArthur M, Poland F.
The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review. BMC Public Health.;9(1):458.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
On 12 December 09, The ME Association reported:
‘The self-expressed needs of people with CFS/ME: a systematic review”
The results of an extensive review into the perceived needs of almost 2,800 people with ME/CFS have been published online by a team from the national ME Research Observatory – which is coming to the end of its three-year funding by the Big Lottery.
The team – led by epidemiolgist Dr Derek Pheby – trawled through thousands of peer-reviewed studies and personal stories to find those which helped build up a picture of the things people with ME say they need to achieve wide-spread respect and recognition in the early 21st century.
A 30-page summary entitled ‘The self-expressed needs of people with CFS/ME: a systematic review” was published in the online journal “BMC Public Health” on 11 December 2009.
“That so many needs are unmet is surprising in developed nations and may be considered unacceptable by many”, commented the authors.
The idea for the review came from Maria de Lourdes Drachler, from the School of Allied Health Professionals at the University of East Anglia, with contextual design support from UEA colleagues Lee Cooper and Fiona Poland.
The researchers say they reviewed 4,713 titles and abstracts, 190 full texts of published papers, and 32 other studies. “The studies conveyed the needs of 2,788 people with CFS/ME, plus many more in over 180,000 on-line discussion postings.”
Dr Pheby commented:
“Assumptions are frequently made, by medical professionals and others about what constitutes a good outcome in ME. All too often the views, hopes and aspirations of people with ME themselves are the last things to be considered. This ground-breaking piece of research rectifies that omission, by bringing together in one report all the published research which does consider the question of what people with ME themselves want and need. It takes a wide approach, looking not only at medical outcomes but also at what people with ME need to enable them to function in the social environment, not only as patients, but also as family members, citizens, and members of the wider community.
“The report, prepared mainly at the University of East Anglia, is the first report from the National ME Observatory project to appear in the peer-reviewed scientific literature. The Observatory approach, from the outset, has been to place people with ME at the centre of the research process, from the project Steering Committee downwards, and this is the first of a series of reports which are putting that philosophy into practice.”
The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
Maria de Lourdes Drachler1, Jose Carlos de Carvalho Leite1, Lee Hooper2 , Chia Swee Hong1 , Derek Pheby3 , Luis Nacul4 , Eliana Lacerda4 , Peter Campion5 , Anne Killett1, Maggie McArthur1 and Fiona Poland1
1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK
author email corresponding author email
BMC Public Health 2009, 9:458doi:10.1186/1471-2458-9-458
Published: 11 December 2009
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
We carried out a systematic review of primary research and personal (‘own’) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends – most importantly – on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.
Free Full paper (text) : http://www.biomedcentral.com/1471-2458/9/458
Free Full paper (PDF Format): http://www.biomedcentral.com/content/pdf/1471-2458-9-458.pdf
Free Pre-publication history: http://www.biomedcentral.com/1471-2458/9/458/prepub
Published Comment in response to The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
The ‘validity’ of patient needs in ‘CFS’?
Angela Kennedy (01 February 2010) n/a
This is a comment on one key aspect of the article.
In the ‘strengths and limitations of the review’ section, even after providing an account of the impact of the illness on sufferers, including the burdens of disbelief from others, refusal of benefits, social exclusion, and other problems of certain needs not being met (the kind of needs that can reasonably be said to be present in all patients of serious illness?) and presenting such evidence as part of a systematic review at that, the De Lourdes et al paper has this to say:
“…The review has not examined the validity of the expressed needs of people with CFS. One theory links the early parental environment with neurobiological development via the hypothalmo-pituitary adrenal axis, changing stress responsiveness through life in those with CFS/ME (reference cited by De Lourdes et al is Van Houdenhove, 2002). This could potentially result in increased ‘neediness’ in those with CFS/ME but would not invalidate those needs…”
Van Houdenhove’s account (an editorial) is immersed in psychogenic explanations for ‘CFS/ME’, based on a concept of “unexplained therefore considered psychogenic by default”, personality problems (including a “narcisssistic tendency to deny personal limits” and “a negative perfectionist attitude induced by overcritical parents” etc.) and somatic symptoms as resulting from “intrapsychic conflict.” These are only a few examples of the eclectic mix of alleged psychopathology present in patients according to Van Houdenhove: significantly, organic aetiology as an explanation is signficant by its absence, despite the large amount of research literature demonstrating organic abnormalities in patients given ‘CFS’ or ‘ME’ diagnosis.
De Lourdes et al then go on to state:
“…As reviewers we have taken the needs expressed by people with CFS/ME at face value – even if their need for support is higher than in others, the needs of people with CFS/ME are expressed very consistently and their accounts of their needs deserve to be heard and responded to…”
This may seem a laudable sentiment, but by assuming, per se and without substantiation, that somehow ‘CFS/ME’ patients needs are ‘higher’ than in other patients with serious chronic illness (for example, Heart disease, AIDS, Motor Neurone Disease, Parkinsons, Multiple Sclerosis, spinal injuries, strokes), rather than the more likely problem that such needs that would be met in those disease sufferers are NOT actually being met in ‘CFS/ME’ patients – likely due to ‘psychogenic dismissal’ (Kenneth Vickery, in Mackarness, 1980: xi-xii) , De Lourdes et al are not actually taking the needs expressed by CFS/ME sufferers ‘at face value’: indeed they are reifying the very assumptions that lead to psychogenic dismissal and its accompanying material and social inequalities for sufferers. By including the Van Houdenhove narrative, without raising the legitimate and rational objections that could be raised to his arguments, the De Lourdes et al comments lead to people diagnosed with ‘CFS’ or ‘ME’, once again, being reduced to strange, needy personalities with mean parents, who feel somatic symptoms because they are like that.
Mackarness, R. Chemical Victims (1980) Pan Books, London.
Van Houdenhove, B. ‘Listening to CFS: Why we should pay more attention to the story of the patient’ Journal of Psychosomatic Research 52 (2002) 495-499.)
Social scientist critically evaluating ‘psychogenic’ explanations for somatic illnesses. Mother of disabled adult who was given a ‘CFS/ME’ diagnosis as a child.