ME in Parliament: Written Questions: ME and UK blood donor ban; Screening stored blood; Retrovirals and myalgic encephalomyelitis (ME) research
From the News pages of the ME Association
by Tony Britton | 19 October 2010
Caroline Lucas, leader of Green Party and MP for Brighton Pavilion, tabled two written questions on the blood ban which is to be imposed on everyone in the UK who has ME/CFS from November 1.
In the first, she asked the Secretary of State for Health on what date his Department’s decision that people with myalgic encephalomyelitis should not give blood was (a) made and (b) implemented.
In her written reply on 19 October 2010, Anne Milton (Parliamentary Under Secretary of State for Public Health) wrote:
The UK Blood Services decision to permanently exclude from blood donation anyone who reports that they have had Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) was made on 8 July 2010. The change to the donor selection guidelines will come into force on 1 November 2010.
This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
The change is being made on the grounds of donor selection criteria by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee.
In her second question, Caroline Lucas asked the Health Secretary whether – with reference to an answer given to the MP for Stroud on 27 January* whether (a) the UK Blood Services and Health Protection Agency study of the prevalence of a rodent virus linked to ME and (B) his Department’s risk assessment in respect of the study had been completed; and if he will make a statement.
Anne Milton replied:
There has been a consistent failure of independent European and American studies to confirm the original American study that described the detection of xenotropic murine leukemia virus-related virus (XMRV), a virus related to rodent viruses, in patients with chronic fatigue syndrome, sometimes referred to as myalgic encephomyelitis.
An expert subgroup of National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010, to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change the conclusions of the subgroup but they are keeping it under review.
The Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), on the basis of current evidence does not recommend further measures at present but wishes to continue to monitor the situation. The NHS Blood and Transplant and Health Protection Agency study group concur with the views expressed both by NEPNEI and SaBTO but also recognise the need for further research on the prevalence of XMRV in the United Kingdom.
In a recent unpublished pilot study conducted by the group a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.
From the News pages of the ME Association
by Tony Britton | 21 October 2010
The Minister for Public Health, Anne Milton, has responded to related questions from two MPs about what the Department of Health plans to do with blood from people with ME that is held in storage or whether he has any plans to screen blood already held in storage for the XMRV virus.
David Anderson (Labour MP for Blaydon) asked if the Department of Health would be screening blood held in blood banks for the XMRV virus. And Sharon Hodgson (Labour, Washington and Sunderland West) asked whether the Department would be removing from storage blood donated by people with ME.
In her written answer on 20 October 2010, the Minister replied:
There are no plans to screen blood already stored in blood banks for the xenotropic murine leukemia virus-related virus (XMRV) or to remove from storage blood donated by persons diagnosed with myalgic encephalomyelitis.
A recent study in the United States (of America) reported that XMRV has been detected in a number of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) sufferers. CFS/ME sufferers can currently give blood when they are well. These data have not been replicated in Europe.
An expert subgroup of National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010, to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change the conclusions of the subgroup. In July 2010, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly did not recommend further measures at present. Both groups will continue to monitor the situation.
However, from 1 November 2010, CFS/ME sufferers will no longer be able to donate blood. The UK Blood Services recognised that exclusion from donation by people with ME/CFS needed to be brought in line with that from other relapsing conditions for the protection of the donor, and not because of potential infection risks.
Parliamentary Written answers and statements, 21 October 2010
David Anderson (Blaydon, Labour)
David Willetts (Minister of State (Universities and Science), Business, Innovation and Skills; Havant, Conservative)
Hansard source (Citation: HC Deb, 21 October 2010, c867W)
Chronic Fatigue Syndrome
Mr Anderson: To ask the Secretary of State for Business, Innovation and Skills if he will provide funding for research on the relationship between retrovirals and myalgic encephalomyelitis. 
Mr Willetts: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. In keeping with the Haldane Principle, prioritisation of an individual Research Council’s spending within its allocation is not a decision for Ministers. Such decisions are rightly left to those best placed to evaluate the scientific efficacy of proposed research.
The MRC is committed to supporting scientific research into all aspects of ME, including studies into the biological basis of the condition and evaluations of treatments. In 2009/10 the MRC spent £109,000 on research directly relating to ME.
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