MRC secret documents, the Wessely axis, and Disability Benefits.
The Medical Research Council's secret files on ME/CFS.
Margaret Williams, 10th December 2009.
… the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME.
… Another document that has been obtained through legal means is a summary of the CIBA Foundation Symposium on CFS that was held on 12-14th May 1992 (reference S 1528/1). … the following quotations come from the section entitled "HIGHLIGHTS":
… "Summarising, the Chairman (Kleinman) predicted that in 10 years time, the central issues in the CFS field would be social rather than medical or scientific, partly driven by the economics and funding of the disability systems in various countries".
Seventeen years after the CIBA Symposium, members of the Wessely axis are still trying to promote the agenda identified in the secret MRC document in 1992. They do this to their own individual financial profit.
Cho HJ, Bhugra D, Wessely S.
“Physical or psychological?" – a comparative study of causal attribution for chronic fatigue in Brazilian and British primary care patients.
Acta Psychiatr Scand 2008: 1–8.
Objective: Causal attribution influences symptom experience, help seeking behaviour and prognosis in chronic fatigue syndrome. We compared causal attribution of patients with unexplained chronic fatigue (UCF) in Brazil and Britain.
Significant Outcomes: British primary care patients with unexplained chronic fatigue, despite similar disability levels, were more likely to attribute their fatigue to physical causes and perceived their fatigue to be more chronic than their Brazilian counterparts.
… Less explored is … to what extent physical attribution – consistently associated with a poor prognosis of CFS (9) – is enhanced by several sociocultural variables.
… These include a biomedical world view incorporating mind-body dualism, awareness of CFS and the sociopolitical debate about the nosological status of CFS in general and for disability benefits in particular.
… Lack of recognition of CFS may also mean lack of recognition in terms of welfare services, disability benefits and sickness absence. Overall, while CFS is officially endorsed as a medical condition in the UK (13), it is not currently diagnosed in medical practice in Brazil.
… In both settings, membership of a self-help group and receipt of sickness benefit and ⁄ or sick leave attributed to CFS responded to yes ⁄no questions. These variables have been associated with a poor outcome in CFS (6, 29).
… Brazilian patients had a lower education level and were more likely to be female, to have a stable partner (i.e. married or cohabiting) and to have a manual occupation. A significantly higher proportion of British patients were on sick leave.
… The questionnaires were read out to illiterate or functionally illiterate participants.
… The questionnaires were read out to 24.3% of the Brazilian patients and none of the British patients.
… As expected, British patients were more likely to be a member of a self-help group and to have had sick leave or received sickness benefit because of CFS.
… Secondary findings were in keeping with the hypotheses: membership of a self-help group and sick leave ⁄ sickness benefit because of CFS, variables claimed to predict poor outcome in CFS, were more frequent among British patients.
… In the UK, most media and self-help material provided by patient organisations are more likely to promote physical rather than psychological explanations (38). Although there is no formal study comparing the media coverage of CFS or the patient organizations between the two countries, we have a clear impression that media coverage in Brazil is minimal and have been unable to find any evidence of the existence of a CFS patient organisation.
… the greater public and medical sanctioning of CFS ⁄ME and the more favourable economic climate in the UK may lead to greater access to sick leave ⁄ benefits for patients with chronic fatigue.
Previous studies in primary care and specialist settings have reported that social support provided in a way which fosters dependency can help maintain chronic fatigue, as it does chronic pain (40, 41). There is also evidence of an association between the so-called “secondary gain" and health outcomes across various disorders – posttraumatic stress disorder (42), functional somatic syndromes such as chronic pain and fibromyalgia (43, 44), whiplash syndrome (45) and aftermath of surgery (46). Therefore, the higher availability of sick leave ⁄ sickness benefit because of CFS in the UK may both contribute to and reflect the greater “legitimisation" of chronic fatigue as a medical disorder.
Executive summary for policymakers at UnumProvident and the DWP:
1. Stop recognizing ME.
2. Stop paying disability benefits for ME.
3. ME patients in the UK will then stop “believing themselves ill”.
4. UK ME patient charities (including AfME) will shut up and go away.
5. 24.3% of UK ME patients will become illiterate or functionally illiterate.
6. The UK media will lose interest.
Key words: receipt of sickness benefit, functional somatic syndrome, self-help group, secondary gain, Cartesian mind–body Dualism, nuts, Brazil.
Details from the MRC-funded PACE trial of CBT & GET:
Predictors of outcome:
Predictors of a negative response to treatment found in previous studies include having a mood disorder, membership of a self-help group, being in receipt of a disability pension, focusing on physical symptoms, and pervasive inactivity [3,18,19].
Cognitive Behaviour Therapy
CBT will be based on the illness model of fear avoidance, used in the three positive trials of CBT [18,25,26]. There are three essential elements: (a) Assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, to establish a stable baseline of general activities, with a graduated return to normal activity, (c) collaborative challenging of unhelpful beliefs about symptoms and activity.
Graded Exercise Therapy
GET will be based on the illness model of deconditioning and exercise intolerance, used in the previous trials [23,24,47].
Declaration of competing financial interests:
PDW (Peter White) has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company. (Swiss Re). MCS (Michael Sharpe) has done voluntary and paid consultancy work for government and for legal and insurance companies. TC (Trudie Chalder) has done consultancy work for insurance companies.
Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise. BMC Neurology 2007, 7:6 Peter D White, Michael C Sharpe, Trudie Chalder, Julia C DeCesare, Rebecca Walwyn and the PACE trial group.