“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 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 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.

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

Response to Authors’ Response: ICL/KCL McClure/Wessely XMRV study

Response from Angela Kennedy to Authors’ Response, PLoS One: ICL/KCL McClure/Wessely XMRV study

Shortlink for Post #3: http://wp.me/p7FYk-2N

Related material: Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Abstract and links for full paper:http://wp.me/p5foE-2Bd
Media coverage Round up 1:http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2:http://wp.me/p5foE-2BA
Imperial College London News Release PDF:Imperial College London News Release XMRV

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Otto Erlwein¹, Steve Kaye¹, Myra O. McClure¹*, Jonathan Weber¹, Gillian Wills¹, David Collier², Simon Wessely³, Anthony Cleare³

1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary’s Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King’s College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King’s College London, Camberwell, London, United Kingdom

The website of PLoS One, online publishers of the Imperial College London study “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome” (5 January 2010), maintains a Comments Section here

In response to criticism around subject selection procedures and methodology, study authors from the Institute of Psychiatry, King’s College London, have published the following response:

Original Article Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Authors Response

Posted by Anthony_Cleare on 12 Jan 2010 at 19:55 GMT on behalf of

Professor Simon Wessely, Professor of Psychological Medicine Professor David Collier, Professor of Psychiatric Genetics Dr Anthony Cleare, Reader in Neuroendocrinology

On 13 January, a version of the commentary below was published on the PLoS One site in response to Wessely, Collier and Cleare, by sociologist, Angela Kennedy:

Angela Kennedy

The authors’ reply to the concerns about patients selection for research for this paper raises more problems in addition to those of the original paper. My comments here should be read in addition to other problems raised by authors on this forum.

Firstly, the authors express some resentment towards those who have legitimately questioned this research cohort and the criteria over the years, which is rather surprising. Contrary to insinuation by the authors, no person on the PloSOne Responses Forum has insinuated that the research cohort they use are somehow ‘ess deserving’ than say, the WPI cohort, purely that they are a different type of patient, using different criteria that select a different population, and that this may cause problems with the findings, and claims made based on those findings, with regard to the British ‘CFS’ population.

This is a reasonable concern to express, and such a deduction can be made based on the evidence the authors provide themselves in their paper, citations, and their response. For example, their paper states:

“Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness.”

In the authors’ response here, they also write:

“Thus patients in our service have also co-operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics “

While patients being processed for a research cohort may well, indeed are likely, to have co-operated and had such tests done, this does not necessarily mean that patients with positive results are part of the research cohort.

Indeed, positive results, which would indicate organic abnormality, would surely be likely to prevent a patient being selected for a cohort, by the very logic described in the author’s paper here, by their own response (the additional tests are considered ‘not clinically necessary’?) and in at least one of their citations (Quarmby et al)?

In the Quarmby et al paper, the cohort is described, in which the criteria used (in addition to ‘Fukuda/CDC’) is ‘Oxford’. The Oxford criteria (Sharpe et al 1991), in particular, actually do allow for patients who fulfil organic abnormality to be selected out of a research cohort. Indeed, Anthony David, referring to these, commented at the time:

“British Investigators have put forward an alternative, less strict, operational definition which is essentially chronic (6 months or more) severe disabling fatigue in the absence of neurological signs with myalgia, psychiatric symptoms and previous viral infections as common associated features.”

Here, special attention needs to be paid to the term ‘previous viral infections’ and ‘absence of neurological signs’, in order to contextualise the cohort selection process applied using the Oxford Criteria.

It is therefore quite reasonable to presume that patients in the cohort described in the Erlwein et al paper are less likely to be suffering from organic abnormalities associated with ‘CFS’ populations than in other research cohorts.

It is also rational to be concerned that the cohort described here may not be representative of many people diagnosed with ‘CFS’ in Britain.

NICE guidelines for example, acknowledge that very little research has been done on ‘severely affected’ patients, who comprise, possibly, at least 25% of the population of people given a ‘CFS’ diagnosis (though so little research has been done on ‘severely affected’ in Britain, the true number is not yet clear).

While patients potentially destined for a research cohort which weeds out ‘detectable organic abnormality’ may be subjected to a rigorous amount of investigations, those not undergoing this process do not undergo such testing – at least not in the NHS. Indeed, such investigations of clinical patients are severely proscribed in the majority of ‘guidelines’: NICE, and the RCPCH guidelines as just two examples.

Ironically, Fukuda guidelines also make the following comment:

“The use of tests to diagnose the chronic fatigue syndrome should be done only in the setting of protocol-based research.

“In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended. Examples of specific tests (which should not be done) include serologic tests for enteroviruses; tests of immunologic function, and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single photon emission computed tomography (SPECT) and positron emission tomography (PET) of the head.

“We consider a mental status examination to be the minimal acceptable level of assessment.” (1994)

That clinical populations are not to be afforded the types of investigations given to research populations makes the whole idea of ‘medically unexplained’ or ‘unexplained by disease’, or ‘functional’ (as synonymous with ‘non-organic’ or not discernibly ‘organic’) as common characterisations of CFS (including by at least one of the authors themselves in previous publications – for just one example, Page et al, 2003), highly problematic at best.

It is also significant that ‘CFS’ is so often described as a ‘diagnosis of exclusion’ (see, for example, the Centre for Disease Control CFS information website.

(Footnote: http://www.cdc.gov/cfs/cfsdiagnosis.htm )

Certain research case definitions comply with this assumption, such as the Oxford Criteria (Sharpe et al, 1991) and CDC Criteria (Fukuda et al, 1994). Here, ‘diagnosis of exclusion’ also functions as a euphemism of ‘medically unexplained’. The key problem within this recurring theme in the literature, which most frequently remains un-addressed, is how a clinical patient’s condition can all too easily become ‘medically unexplained’ because of the practice of encouraging doctors to severely limit investigations in the first place: except, it would appear, ironically, in research populations in which ‘organic’ illness is being weeded out to provide the type of cohort that might fulfil ‘not organically ill’ definitions.

The issue of ‘disability’ also needs to be clarified. The references cited in the Erlwein paper to support the statement that the patient cohort was of ‘high levels of disability’ refer only to ‘disability’ in psycho-social terms or feelings of ‘fatigue’, and not in terms of physical impairment, a key omission.

Mundt et al’s paper, in particular, focuses on specific mental health problems and the social exclusionary effects of living with these. While in no way invalidating or trivialising the disability caused by mental health problems, it must be pointed out that both Mundt et al and Chalder Scales nevertheless fail to elucidate a high level of physical or physiological (say, for example, neurological, mitochondrial and/or cardiovascular) impairment – key problems present in people given a clinical diagnosis of ‘CFS’, usually related to specific organic abnormalities that can be found, if they are tested for in the first place.

With regard to the Canadian criteria (Carruthers et al), in fact they have undergone some ‘validation’. Jason et al found:

        “…Canadian criteria selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurologic symptoms. The overall findings suggest that the Canadian clinical criteria appear to select a more symptomatic group of individuals than the CFS criteria, and these individuals do demonstrate less current and lifetime psychiatric impairment than those selected according to the CFS criteria. In contrast, the CFS group was not significantly different from the Chronic fatigue-psychiatric group in psychiatric impairment.

“Predictably, the Chronic fatigue-psychiatric group evidenced the highest frequency of current and lifetime psychiatric disorders… Overall, there were 17 significant symptom differences between the Canadian and Chronic fatigue-psychiatric group, but only 7 significant symptom differences between the CFS and Chronic fatigue-psychiatric group. Findings suggest that the Canadian criteria select a group of patients with more symptoms, and the Canadian criteria identify a group with higher levels of physical functional impairment and less psychiatric comorbidity.

“Findings from the present study indicate that the Canadian criteria does capture many of these cardiopulmonary and neurological abnormalities, which are not currently assessed by the current CFS case definition (Fukuda et al., 1994).

“However, it is worth noting that when the Fukuda et al. (1994) CFS case definition was conceived, the research had not yet been done investigating these abnormalities. In combination with symptom patterns, it is possible to conclude that the Canadian group does select individuals with greater impairment, particularly given the physical composite score, fatigue/weakness, neurologic and neuropsychiatric symptoms, as these symptoms can interfere with daily living and occupational performance. Results from this present investigation highlight the importance of contrasting different diagnostic criteria in order to gain a greater understanding of the syndrome now known as CFS. The findings do suggest that the Canadian criteria point to the potential utility in designating post-exertional malaise and fatigue, sleep dysfunction, pain, clinical neurocognitive, and clinical autonomic/ neuroimmunoendocrine symptoms as major criteria for future attempts to define this syndrome…”

(Comparing Definitions )

In addition to using the Carruthers et al criteria (or ‘Canadian Criteria’), the WPI give this information about their patient cohort in their supporting online material:

“Their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to peturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assyas) and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing…”

(http://www.sciencemag.org/cgi/content/full/117905/DC1 )

It is therefore highly unlikely, as the authors indeed acknowledge in their reply here, that Erlwein et al were testing the same type of patient as those tested by the WPI, which inevitably makes the Erlwein et al findings – and perhaps some of the wilder claims that they have ‘cast serious doubt’ on the WPI’s findings, unfortunately made in some of the lay media – not scientifically tenable. The failure of Erlwein et al to include such type of patient in their cohort, does not mean that such patients do not exist in Britain. Copious patient anecdotal experience, research reports, and charity surveys indicate that they do exist. Whether XMRV is present or not is another matter, but there are enough identifiable problems around patient selection alone with the Erlwein et al paper to indicate this is not a definitive disproving of the existence of the virus in Britain.

Ongoing neglect of the importance of establishing a possible ‘CFS’ patient population in Britain, clinically and in research settings, using the Canadian Guidelines, is preventing the development of knowledge that might help extremely ill and disabled people here in Britain.

The problems I have briefly outlined here do not fully express the range and depths of problems with regard to: the identity of an accurate ‘CFS’ population; the instabilities of ‘CFS’ criteria per se; the faulty concepts of ‘medically unexplained’ or ‘functional’ and relation to ‘psychogenic’ explanations for somatic illness; the vagaries of criteria that claim to facilitate a ‘diagnosis of exclusion’; and the psychogenic dismissal of serious organic dysfunction of patients given a ‘CFS’ diagnosis, problems that have happened for many years. These problems are relevant to the Erlwein et al paper. Furthermore, they are highly relevant to all research that claim a psychological and/or behavioural aetiology to the condition or conditions that get deemed as ‘CFS’.

REFERENCES

Carruthers, B. et al (2003): Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, Vol. 11(1), pp 7-115.

Chalder, T. Berelowitz, G. Pawlikowska, T. Watts, L. Wessely, S. Wright, D. Wallace, E. P.:Development of a fatigue scale. Journal of Psychosomatic Research Vol 37: Issue 2: Feb 1993: 147-153.

David, A.S.:Postviral syndrome and psychiatry. British Medical Bulletin: 1991: 47: 4: 966-988.

Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.:The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994 Dec 15;121(12):953-9.

Jason LA, Torres-Harding SR, Jurgens A, Helgerson J.:Comparing the Fukuda et al. Criteria and the Canadian Case Definition for chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome 12(1):37-52, 2004.

Mundt, J.C. Marks, I.MShear, K. Griest, J.H.:The work and social adjustment scale: a simple measurement of impairment in functioning. British Journal of Psychiatry (2002) 180: 461-443.

Page, L.A. Wessely, S.:Medically unexplained symptoms: exacerbating factors in the doctor–patient encounter. J R Soc Med 2003;96:223-227.

Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, et al: Chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21.

Competing interests declared: Social scientist critically evaluating ‘psychogenic’ explanations for somatic illnesses. Parent of adult who given a ‘CFS’ diagnosis as a child.

More thoughts on the Gibson Report by Angela Kennedy

Shortlink for Post #2: http://wp.me/p7FYk-L

An edited version of a commentary first published in December 2006 by social scientist, Angela Kennedy, following publication of the “Gibson Report”.

These are some of my thoughts on some problems in the Gibson Report

My own concerns below are in addition to other concerns expressed by others (including but not limited to the dismissal of Lyme, the children’s section, the approval of CBT etc) and also in addition to approval of some of the more positive aspects of the report. As I have said before, the key is that no matter how positive some aspects may be, it is the dangers that we need to guard against, and therefore it may not be in the community’s best interest to wholeheartedly endorse the report, even in principle. In fact my own opinion at present is that it would be foolhardy.

It was only by reading this report about four times and reading John Sayer’s comments [Page 77: The ONE CLICK Report Gibson Inquiry], and putting my sociological linguistic analysis head on (as tedious as that appears to be to some people!) that the following problems occurred to me. I didn’t see it on the first reading at all.

With regard to point 2 below, the Report claims patient hostility TOWARDS DOCTORS THEMSELVES (not their policies) SEVEN TIMES.

With regard to point 3, I believe that comment from the Report has been made before by a psychiatrist – possibly Peter White? [Ed: Professor Peter Denton White, Barts CF Service].

These comments have been submitted to One Click as part of their consultation exercise:

1. This report is written in a very idiosyncratic style – which one would not expect from a document produced by a group of parliamentarians and where clarity is of vital importance. There are, therefore, some confusing statements requiring further clarification, for example:

The group does not intend to criticise the motivations or actions of any one group…

What does this mean? Should an enquiry not present criticism if necessary?

…indeed, the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field…

This statement is charged with innuendo yet nebulous at the same time. What ‘semantics’ problems have been encountered by the Group?

2.  Emotive and inappropriately inflammatory language against patients, both individually and as organised advocates (or ‘groups’), that has no place in a report ostensibly on scientific research into ME/CFS has been used on more than one occasion by both by Dr Ian Gibson himself in communications around the report – for example, in his article published in the Journal of Clinical Pathology in August 2006, and within the Report itself, for example:

…for some sufferers, their personal physical experience of the illness has led to resentment of those who favour a psychosocial/behavioural course.

This comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.

…we are left in no doubt that this is a contentious field, and some of the evidence we heard provoked considerable hostility from the audience.

What audience? Why an emotive term such as ‘hostile’?

Quite apart from the often strongly polarised views of some patient campaigning groups and the scepticism of some of the medical profession, there have been disagreements, even amongst those who represent different groups of patients and medical professionals. This has left many patients feeling very aggrieved, and many doctors feeling misrepresented.

The comment about patients’ feeling is unnecessary and contributes to an insinuation of patients as being “over-emotional”, while doctors, in contrast, are merely and justifably feeling ‘misrepresented’.

Professor Wessely is considered by many to be the leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS have been to his model. Many patient groups oppose these treatments, because, although they are founded on the positive results of controlled clinical trials, they are psychologically based.

Here patients are implied as being prejudiced against psychological treatments, despite the alleged efficacy of the treatments. This is clearly not an accurate summing up of advocate critique of the psychiatric paradigm, which is based on critical analysis of the evidence and claims put forward by proponents of the psychiatric paradigm. To insinuate otherwise appears disingenuous.

Wessely gave up the research side of his work, possibly due to extreme harassment he received from a very small fringe section of the ME community.

It is quite simply ludicrous that an inquiry carried out by parliamentarians has apparently accepted such serious yet nebulous, and apparently un-evidenced allegations at face value. This part of the report is particularly inflammatory towards patients and therefore inappropriate.

Their observations that GET [Graded Exercise Therapy] may make severe sufferers feel worse, has lent fuel to their often serious antipathy to the doctors offering it.

Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of the proponents. To claim otherwise is emotive and inflammatory.

…there is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.

Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.

The frequent categorisation of patients as angry and hostile is a highly unfortunate feature of this document. It has already been found that this tendency to describe patients thus is rife within the literature of proponents of the psychiatric paradigm (Kennedy A, 2005, Hooper, 2004, Marshall and Williams, 1996, 1999). It is therefore highly demoralising to see similar constructions of patients within the Gibson Report.

In Dr Gibson’s Journal of Clinical Pathology article, he states: “…to curtail attempts of some to suppress what they hear and what they see written down and to keep their vitriolic actions and comments at bay.” It is clear that Gibson has allowed personal prejudice to inform the way he has constructed the very people he claims to want to consult. In the circumstances, it is ironic that the Gibson report claims “…our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard”.

By constructing patients or their representatives as hostile, ‘vitriolic’ and unreasonable is to further alienate the community from enfranchisement. It is astounding to find such emotive and inflammatory language in such a document.

3.

…for some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease.

This statement is problematic on a number of fronts. There is a construction of a “straw man”- the alleged doctors who deny physical elements of the illness. In actuality, no doctors would do this. The fundamental contention arises where doctors assign psychiatric causes to physical symptoms. By ignoring this fundamental problem, the Report engages in “fence-sitting”, which, in actuality, allows the psychiatric paradigm to take ascendancy. Furthermore, to claim that ‘some patient groups’ are claiming that there is no psychological element to the disease is speculative and misrepresentative – patients have instead been arguing that any psychological aspect of ME/CFS can be seen in any other organic disease, and that there should be no special pleading for ME/CFS as somehow more ‘psychological’ than any other organic disease.

4.

A lot has been made of the link between CFS/ME and Lyme’s [sic] disease or Lyme Borreliosis.

What does “A lot has been made” mean? In light of the further statements made on this subject – it appears a very trivialising statement to make, in the face of strong research and clinical evidence demonstrating the relevance of this issue to ‘CFS/ME’.

5. The recommendations in section 4.7 are astounding, for example, “other symptoms should be treated only when the doctor had absolutely excluded any other underlying organic illness that could be the cause…” and ” if depression is felt to be a significant result from the illness and contributing to its overall effects then anti-depressants may help if prescribed with full explanation by the doctor.” In this section, the Gibson Report is actually giving medical advice to doctors, a la NICE! This could not possibly be part of its remit.

6.

…the lack of easy confirmation of the organic nature of the illness by a readily available investigation lends itself to occasional invasion by those who are not genuine sufferers. The existence of such patients, and the inability of some in the medical profession to separate them from genuine patients with CFS/ME enhances the view that all patients with CFS/ME are neurotic and/or not genuinely ill.

These comments appear to arise from pure speculation and opinion. Such comments point to the special pleading of ME/CFS being a ‘malingerer’s charter’ – a professed view of certain proponents of the psychiatric paradigm.

7. In light of the many real problems of this report, a glowing endorsement by the ME/CFS/borreliosis etc community would be dangerous.

The report has various dangerous flaws. If it is endorsed in its entirety – it could have far-ranging adverse effects on many members of the community.

The Gibson Inquiry/Report has many similarities to the CMO’s report- the usual curate’s egg situation – good in parts. But it is the flaws that form the most potential dangers to the ME/CFS community. People’s safety is at stake, and here we are faced with possible risks to that safety caused by government intervention, a valid concern of advocates since the beginning of this Inquiry.

There are some fair questions to ask: How damaging will the flawed parts of the Gibson Report be to sufferers themselves? Will we find the positive aspects not followed up because the report actually has no teeth – but the flawed comments adopted to the letter by the psychiatric lobby and their government supporters?

No patient or patient representative has to endorse the report as a whole, even if some of the recommendations / comments are considered good.

REFERENCES

Hooper, M. et al. The Mental Health Movement: Persecution of Patients? 2004

Kennedy, A. A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS  2005

Marshall, E. Williams, M. Denigration by Design? A Review, with References, of the Role of Dr (now Professor) Simon Wessely in the Perception of Myalgic Encephalomyelitis, Volume I: 1987-1996: August 1996 (217 pages); Marshall, E. Williams, M. Denigration by Design? Volume II: 1999 Update: December 1999 (270 pages).

© 2007 Angela Kennedy

The report by The Group on Scientific Research into ME (GSRME) that resulted out of the “Gibson Inquiry” can be read here: http://www.erythos.com/gibsonenquiry/Report.html

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