Parliamentary Questions | David Brady MP, Countess of Mar | 27 November 2012

David Brady, Conservative MP for Altrincham and Sale West – questions about tissue donation by ME/CFS/PVFS sufferers and clinically validated studies of gamme retrovirus infections.

The Countess of Mar – scope of NICE Guideline on ME/CFS in Work Capability Assessments.


Mr Brady asked the Secretary of State for Health why patients with myalgic encephalopathy, chronic fatigue syndrome and post-viral fatigue syndrome have been prevented from being tissue donors since 2007; and why recipients of tissue donations from such patients were deemed to be at risk.

In a written answer on 27 November, Conservative Parliamentary Under-Secretary at the Department of Health Anna Soubry replied:

People with myalgic encephalopathy, chronic fatigue syndrome and post-viral fatigue syndrome can donate tissues once their symptoms have resolved. Recipients of tissue donations from such patients have not been deemed to be at risk by the Joint Professional Advisory Committee (JPAC). However, the causes of these conditions are unknown and so a precautionary approach is taken.

Guidelines on the selection of donors are set by JPAC, which includes representation of all four UK Blood Transfusion services and the Medicines and Healthcare, products Regulatory Agency (MHRA). Guidelines are regularly reviewed and should more information on the causes of these conditions emerge it would be taken into account in reviewing eligibility for donation prior to symptoms of the conditions having resolved.


Mr Brady asked To ask the Secretary of State for Business, Innovation and Skills whether any Government-funded bodies have used clinically validated assays in their published studies into gamma retrovirus infections in myalgic encephalopathy, chronic fatigue syndrome and prostate cancer patients in the latest period for which figures are available.

In a written answer on 27 November, Conservative Minister for Universities and Science David Willetts replied:

The Medical Research Council (MRC) is funded by the Department for Business, Innovation and Skills and is one of the main agencies through which the Government supports medical research.

Researchers at the MRC’s National Institute for Medical Research are investigating infection and replication of retroviruses, such as xenotropic murine leukaemia virus-related virus (XMRV).

Two papers resulting from work on XMRV in patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome and also in prostate cancer patients have been published. Neither study identified a link between XMRV and disease.

Details of the sensitive serological and PCR assays used in the studies are described in the papers. There are no clinically validated assays to study gammaretroviruses in humans.


The Countess of Mar asked the Government whether during work capability assessments Atos Healthcare professionals and Department for Work and Pensions assessors are required to take into account the National Institute for Health and Clinical Excellence (NICE) Guidelines on Chronic Fatigue Syndrome (CFS) and myalgic encephalopathy (ME), and, in particular, NICE categories of CFS and ME.

In a written answer on 27 November, the Conservative Minister for Welfare Reform Lord Freud replied:

While DWP acknowledges the value of the NICE guidelines on CFS/ME, this is a clinical guide.

All healthcare professionals who undertake assessments on behalf of DWP are required to read an evidence-based protocol on CFS/ME as part of their induction training. In addition, all healthcare professionals are required to engage in a programme of continuing medical education, which includes modules on chronic fatigue syndrome.

DWP decision-makers also have access to evidence-based guidance on CFS/ME


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