“The self-expressed needs of people with CFS/ME: a systematic review”: Response from A Kennedy

BioMedCentral has published a response by sociologist, Angela Kennedy, to the paper: ‘The self-expressed needs of people with CFS/ME: a systematic review”

Shortlink for Post #5: http://wp.me/p7FYk-3W

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.

Paper:

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.”*

 

*Ed Note: 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 GroupReference 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 being made available for public scrutiny.

Abstract

http://www.biomedcentral.com/1471-2458/9/458/abstract/

Research article
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

Abstract
Background

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)

Methods

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.

Results

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.

Conclusions

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 toThe expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review

http://www.biomedcentral.com/1471-2458/9/458/comments

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.

REFERENCES

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.)

Competing interests

Social scientist critically evaluating ‘psychogenic’ explanations for somatic illnesses. Mother of disabled adult who was given a ‘CFS/ME’ diagnosis as a child.

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The Courage for Conflict: Kennedy; M.E. and Political Conflict: Bayliss

The Courage for Conflict by sociologist, Angela Kennedy

In response: M.E. and Political Conflict by William Bayliss

Shortlink for Post #4: http://wp.me/p7FYk-3a

Source  The Courage for Conflict

The Courage for Conflict

By Angela Kennedy  |  29 October 2004

Regarding the two recent Co-Cure posts An open letter to all CFS/ME advocates and Advocacy in the CFIDS community:

AIDS advocacy is probably one of the greatest examples where courage to stand up and say “This is morally wrong”, and brave conflict and accusations of personal attack, has worked effectively for patient rights. Movements for social justice have historically only become effective when they have adopted adversarial positions towards those depriving them of that justice.

The issues around when does criticism become “personal attack” have not been tackled in either of these posts. What constitutes “healthy” disagreement (or “unhealthy” for that matter) has not been clarified either. The question (unanswered in these posts) also arises: when people who are supposed to be fellow advocates are sabotaging important progress, how do you refrain from conflict without acceding to the sabotage? Majority rule can become mob rule: put three Wessely proponent psychiatrists in a room against an ME/CFS sufferer and they will win the point that ME/CFS is a mental and behavioural disorder: it does not make them correct.

Kimberley McCleary cites another who claims that: “Communities of suffering (COS)* (and those at risk) deserve to have a “seat at the table” of research and public health policy decision making. There needs to be greater sensitivity to the etiological understandings of COS. On the other hand, communities of suffering also need to recognize that their etiological understandings may not be correct.”

The question is, how is “correct” decided? And by who? What happens is the “COS” AREcorrect, (as, for example, in the ME/CFS community’s critique of the inappropriate generalising of psychiatric/behavioural causation to the neurological disease ME/CFS WHO ICD-10 G93.3, by psychiatrists who have been researching on heterogeneous groups) and they are ignored by policy makers anyway?

There are some real problems with these posts. To conflict theorists (broadly those who study how unequal power relations work in societies, but out of concern to reduce the social and material inequalities of such power relations) they would appear very naive and extremely functionalist (broadly supporting of unequal power relations in society, believing they perform a necessary function). A façade of respectability and striving for harmony is being constructed in these posts: but even, for example, British and North American government politicians are allowed to be adversarial! How realistic is it to expect deep conflict and anger to be suppressed in the ME/CFS community, especially considering how deeply oppressed its members remain?

I think the ME/CFS community has some very hard questions to ask itself about power relations, both within the community itself, and those directed against the ME/CFS community. We have STILL not had the successes we desperately need: how long are people prepared to continue to be denied of these? These are important issues to consider: they are not rhetorical questions. Adversarial positions have arisen, not because we all want to be ‘rivals’ or enjoy conflict, but because our situation is so desperate. There is, unfortunately, a real need to be adversarial. It takes courage to be so.

While people continue to encounter personal oppression, exploitation and misconduct, there will be conflict. The way to reduce such conflict is to work towards righting the wrongs, and this needs to be done as a matter of urgency: strategies for strong, effective political advocacy that does not shy away from assertive claims for the rights of ME/CFS sufferers and, where necessary, conflict with those whose actions are blocking such strategies, are our greatest hope of preventing our rights as a community from being further eroded, and ensuring that those rights are met, promptly.

Angela Kennedy [At the time, director ONE CLICK Group]
THE ONE CLICK GROUP
29 October 2004


Source   M.E. And Political Conflict

M.E. and Political Conflict

Response by William Bayliss  |  2 November 2004

With regard to University Lecturer Angela Kennedy’s article entitled The Courage for Conflict – posted on the ONE CLICK Group website on 29th October 2004. I am the spouse of an M.E. sufferer and a social-science graduate: majoring in social history/economics and with many years of experience working for social justice & environmental responsibility. I probably know more than most how human agency and chemicals are bringing our planetary biosphere to the point of nightmarish precipice.

The environmental situation is somewhat analogous to the extremely urgent situation now faced by M.E. sufferers  – in that matters are very much coming to an ugly head. In this case, the myopic human agency responsible is that of deceitful corporate-backed psychiatrists – who are presenting dangerous cost-saving ‘treatments’ to budget-conscious Government Ministers. Evidence for and the agenda of corporate backers has been amply set out by – amongst many other authors – Martin J Walker in his book entitled Skewed: “Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome” [Slingshot Publications, August 2003, ISBN: 0-9519646-4X. Available for £12.00 including p&p from: Slingshot Publications, BM Box 8314, London, WC1N 3XX].

Though it is nominally a research trial into M.E., the Medical Research Council’s current ‘PACE’ trial has been very cleverly designed to exclude most true M.E. sufferers and include sufferers of mental illness. As such, the trial is a deceitful national scandal and a gross abuse of taxpayer’s money. When the skewed results of this trial begin to be used by Government, the NHS and the DWP, M.E. sufferers should be under no illusions as to what it will mean.

They will face forced and increasing physical exercise programmes at the hands of psychiatrists in the twelve new regional ‘M.E. Treatment Centres’. Patients’ negative response to such programmes will be viewed by these psychiatrists as evidence of mental illness – thereby presenting an appalling no-win situation to physically vulnerable people.

There is now much international research evidence demonstrating why patients with M.E. (ICD-10 G93.3) will respond negatively – suffering long-term damage and disability as a direct result. However, these (Simon) Wessely-School Psychiatrists ignore such hard science because they are working to their own corporate-backed agenda.

In opposition to good science they simply assert that M.E. is not a real physical illness and is only ‘an errant belief’: i.e. a mental illness. Unfortunately, this perverse psychiatric view is fast capturing the minds of Ministers, NHS Doctors and Managers at the DWP (Department for Work & Pensions).

The impending results of the PACE trial will no doubt set the seal on this cancerous doctrine. In the not too distant future, persecution of M.E. sufferers, benefit withdrawals and the number of families with child M.E. sufferers subject to child ‘protection’ and ‘care’ orders will all skyrocket. Should readers believe that such an assessment is over-the-top fear-mongering by amateur M.E. campaigners I would direct them to document entitled The Mental Health Movement: Persecution of Patients by the eminent UK Emeritus Professor of Medicinal Chemistry, Malcolm Hooper.

I fully endorse the general thrust of Ms Kennedy’s article with respect to courage and conflict. If M.E. sufferers and their families do not wake up and confront the forces ranged against them now, the ‘conflict’ they will face at the 12 new (psychiatric) ‘M.E. treatment’ centres in the near future will be diabolical by comparison. The proverbial writing is well and truly upon the wall. The well-intentioned but wholly misplaced attempt to dialogue with and influence these corporate-backed psychiatrists has not only failed to secure progress, it has led to the extremely dangerous situation now at hand.

All this pussyfooting about has been tried for years by the ME Association and Action for ME and has been pointless and damaging to our cause. Members have said as much for years, but their ‘representatives’ have not been listening. It is the view of many that this has led to the corruption of these two organisations, both of which emphatically do not now represent the best interests of true M.E. sufferers.

The situation is analogous to that of Neville Chamberlain’s appeasement of the Nazis. Chamberlain wasted years trying to negotiate with Hitler when any cursory reading of Hitler’s copious words would render it obvious that conflict was unavoidable. Chamberlain’s time wasting was doubly foolish because it gave the Nazis time to gather strength and gain allies.

Some in the M.E. community may find such an analogy distasteful. In response I would direct them to just a cursory reading of the equally copious words of ‘Wessely-School’ psychiatrists (for example, Dr Michael Sharpe’s statement that: “Purchasers and Health Care providers… are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition [and who] are in this sense undeserving of treatment.” [Hooper – op cit. page 75.]).

I would also add this: what is really distasteful is that, as were the Nazis, Wessely-School psychiatrists are hell-bent on using pseudo-science to persecute physically ill people because they are a costly inconvenience. Such persecution is causing untold misery and has, in the opinion of many, contributed to the desperate suicide of physically ill M.E. sufferers. I for one am very angry about this scandalous situation and plan to do something about it. What are you going to do about it?

I would solemnly caution the M.E. community to beware of people attempting to persuade us not to confront and politic against corporate-backed psychiatrists. Carefully examine the motives, loyalties and sponsors of these foolish souls. History most definitively shows that human-rights and justice are never given; they have to be fought for against powerful vested interests.

The M.E. community are not the instigators of politicised conflict, the Wessely-School are. These people are not open to reason, they are the enemy of good science and they are the enemy of M.E. sufferers. Enough already, the time has come to sadly disassociate with MEA, AfME and other appeasers – they are part of the problem not the solution.

We did not start the fight with the Wesselyites but we MUST now take courage and fight fire with fire. The one thing we have on our side that Wesseleyites do not is science. It is time to expose bad science and vested interest.

William Bayliss, University Member
2 November 2004