Chronic Fatigue and Ethnicity, MRC, Bhui, Nazroo (PIs)

In the previous posting at:

https://meagenda.wordpress.com/2008/09/12/the-medical-research-council-a-case-to-answer-dr-neil-abbot/

Dr Neil Abbot refers to the study

3. An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

this is the study

Chronic Fatigue and Ethnicity, Medical Research Council, Prof K Bhui (PI)

Manchester University website list Prof James Nazroo as co Principal Investigator (PI) with Prof Kam Bhui and lists three co-researchers for this study as “Ashby, Wessely and White”.

Very little information appears to be available on the MRC site about this Chronic Fatigue and Ethnicity study.  In August, I submitted a request to the MRC for information under FOI.

I received the following response from the MRC on 18 August 2008 from Rosa Parker, Corporate Governance and Policy, Medical Research Council

18 August 2008

Freedom of Information Request

Thank you for your request under the Freedom of Information Act for a copy of the Study Protocol for the Professor Bhui’s MRC funded grant entitled ‘Chronic Fatigue and Ethnicity. I am sorry that your request was not acknowledged when it was received here.

As you may know summary information on this study, and other studies supported by the MRC in the field of CFS/ME is available on our website. I have also attached the information which we would normally provide on any grant we have funded, namely the title, principal applicant and the abstract of research, including the lay summary. This is attached for your information.

As a research project and not a trial, the project does not have a study protocol, however a description of the research proposal was included in the original application submitted to the MRC and we have interpreted this to be the subject of your current request. As applications are submitted to the MRC in confidence we are not able to provide copies of the research proposal at this stage and would consider that a number of exemptions would apply, particularly as the research is still ongoing.

As the grant is reaching its conclusion, and Professor Bhui and co-investigators prepare their research for publication, information included in the research proposals on the aims and conduct of the study will be published in due course.  In addition the MRC considers that the release of the research proposal before publication of the paper(s) may prejudice the commercial interests of the researchers in undertaking further research which may result from the findings, and from the methodologies and skills applied. We therefore consider that there are three Freedom of Information exemptions which apply to this request:

Section 22: Information intended for future publication

[2 of 3]

Section 36 (2)b: Effective Conduct of Public Affairs
Premature publication or disclosure of ongoing work is considered likely to undermine the progress of this publicly funded study.

Section 43 Commercial Interests
Disclosure of the information requested is likely to prejudice the commercial interests of the researchers in undertaking further research resulting from their findings.

As the information you have requested will be published in the final scientific paper, or papers, the  MRC does not consider it to be in the public interest to release the information you requested into the public domain at present. It is thus our view that it would be inappropriate to release the information you requested before the research project has been fully completed and the findings have been published. Such an outcome would be considered to prejudice the effective conduct of public affairs in undermining the progress, and inhibiting the impact of, publicly funded research.

I hope that you are satisfied that you find the enclosed information helpful and that your request has been handled appropriately. If not, you may appeal using the MRC’s complaints procedure.

Details are on the MRC website at: www.mrc.ac.uk/index/about/about contact/aboutcomplaints_procedure.htm , alternatively you may contact the MRC Complaints Officer by email at customer.service@headoffice.mrc.ac.uk or write to The Complaints Officer, Medical Research Council, 20 Park Crescent, London W1B 1AL.

If, following the Complaints Officer’s reply, you remain dissatisfied; you may contact the Information Commissioner. Details of how to take your complaint further are at www.informationcommissioner.gov.uk .

Yours sincerely
Rosa Parker Corporate Governance and Policy
Direct line 020 7670 5477
e-mail: rosa.parker@headoffice.mrc.ac.uk
web: www.mrc.ac.uk

[Page 3 of 3]

Principal Applicant: Professor K Bhui, Queen Mary, University of London
Award: £162,146 Tenure of grant: 01/06/2006-30/11/2008

Title: Chronic Fatigue & Ethnicity

Scientific Abstract:

Chronic fatigue syndrome (CFS) causes significant disability. Early work suggested that CFS was more common in Caucasians than other ethnic groups; recent research casts doubt on this. The Ethnic Minorities Psychiatric Illness Rates in the Community study (EMPIRIC) provides a unique opportunity to answer this question. It included population samples of six ethnic groups: Black Caribbean (N=694), Irish (733), Indian (643), Pakistani (724), Bangladeshi (650), and White British (837). Questions assessed physical health, common mental disorders (CIS-R), physical function (SF-12), emotional strain, social support, work stress, coping and health service use. Ten questions about fatigue assessed duration, intensity, and effort to overcome fatigue; from these a CFS-like illness can be defined. A qualitative component assessed illness models and coping behaviours. The proposed two year quantitative and qualitative investigation of EMPIRIC data will assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours.

Lay Summary:

This study investigates fatigue and chronic fatigue like illnesses in six ethnic groups. Previous studies show that chronic fatigue related illnesses are uncommon among ethnic groups. Studies in the US show a higher prevalence of fatigue and associated illnesses among ethnic groups. In the UK we have inadequate information on the largest ethnic groups. If there are ethnic variations in prevalence, then risk factors may differ across groups, and this may give us clues about how fatigue and related illnesses are influenced by cultural factors, or whether they can be understood as a response to cultural adaptation, isolation, or other stressors such as discrimination. We can also find out if the frequency of service use, and personal explanations that people give for their condition, influence the likelihood of having a fatigue related illness. Therefore, at the moment, we do not know whether the interventions offered should be changed for ethnic groups, or whether ethnic groups present with similar syndromes that are just not recognized, perpetuating disability and a lack of timely intervention. We also do not know whether there are cultural rather than social factors that are neglected, not only in ethnic groups, but also in majority population. For example, coping behaviours such as social support, or exercise, or leisure activities, or religious activities may help some ethnic groups to reduce their risk of fatigue like illness. Findings such as this may help refine or develop future interventions. The study we propose exploits data that is already collected and is available for further analysis. It is deposited in a data archive which is accessible to the public and research community. Therefore the costs of the work are minimized. We will be able to analyze these data to identify which social, and cultural risk factors are influential related to having fatigue like illnesses, and to common mental health problems. The risk factors can be discerned from the statistical analyses, from the qualitative interviews and transcripts, and from questions about what the subject thought was the cause of fatigue: amongst the explanations is exercise, medication, illness etc. We therefore have a personal view from the subject, alongside statistical information to assess relevance of specific risk factors.

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