The Countess of Mar asked the following question in the House of Lords on 8 November 2010:
To ask Her Majesty’s Government what event precipitated the Department of Health decision to exclude all people who have or have had myalgic encephalomyelitis/chronic fatigue syndrome from donating blood from 1 November 2010.
You can view the whole debate from the House of Lords from YouTube, which runs to about seven minutes long:
You can also view a transcript of the debate from Hansard.
For completeness, the transcript is reproduced below:
Asked By The Countess of Mar
To ask Her Majesty's Government what event precipitated the Department of Health decision to exclude all people who have or have had myalgic encephalomyelitis/chronic fatigue syndrome from donating blood from 1 November 2010.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, this decision by the UK blood services was prompted by a recent independent expert risk assessment of a possible link between a murine retrovirus and CFS/ME. Although the risk assessment found no evidence of a link or of a risk to transfusion recipients, the UK blood services recognised that practice for CFS/ME should be brought in line with other conditions where individuals are permanently excluded from blood donation to protect their own health.
The Countess of Mar: My Lords, I am grateful to the noble Earl for that reply. I offer my congratulations on the precautionary principle being called on in this instance, but ask him why the Department of Health did not say this in its press release. The notice said only that it was for the benefit of patients and no one, but no one, believed it. In the light of the findings on various viruses, not just XMRV, in the blood of patients suffering from ME, what new biological research as opposed to psychological research is being conducted into this terrible illness?
Earl Howe: My Lords, it is important to make clear to the noble Countess that no definite picture has yet emerged from the published literature on whether the virus in question, XMRV, is implicated in CFS/ME. The National Expert Panel on New and Emerging Infections has considered all the available evidence about XMRV and has reported that no public health action is required at this time. The Advisory Committee on the Safety of Blood, Tissues and Organs, on the basis of current evidence,
"does not recommend further measures at present, but wishes to continue to monitor the situation".
As regards research into CFS/ME, the Medical Research Council is committed to supporting scientific research into all its aspects, including studies into the biological basis of the condition and evaluation of treatments. In 2009-10, the MRC spent £109,000 on research directly related to the condition.
Baroness Gardner of Parkes: My Lords, I am sure that everyone would agree that we would rather be too cautious, but can the Minister explain why anyone over a certain age is automatically excluded from being a blood donor?
Earl Howe: My Lords, this is a pragmatic decision by the advisory committee on donation. In the case of CFS/ME, which we are looking at at the moment, the committee recommended that the donation policy should be brought into line with other relapsing conditions, where the rule is that we do not take blood from people with such conditions.
Lord Alderdice: My Lords, given that there is no medical test that is pathognomonic for this disorder or group of disorders, how do the authorities propose to police its exclusion other than simply by hoping that people will come forward with the information themselves?
Earl Howe: My noble friend is right to say that there is no diagnostic test for CFS/ME other than a process of elimination and watching the symptoms. It is largely on a self-reporting basis that the blood transfusion authorities will be alerted to the condition unless, of course, a patient's GP is involved and can report his or her opinion.
Baroness Finlay of Llandaff: My Lords, do the Government intend to ask NICE to evaluate pathogen inactivation, which is already used on fresh frozen plasma for children, for blood components as well because of new and emerging infections and the increased risk of infections in donors because of the increase in international travel?
Earl Howe: My Lords, I understand why the noble Baroness asked that question. I believe that platelets cannot be stored in refrigerated conditions and are therefore, in theory, open to more infection. I am advised that SaBTO, the expert committee, looked at this and advised that no action was currently necessary.
Baroness Thornton: My Lords, I took a look at the blood transfusion service's excellent website over the weekend to see what it had to say about who should and who should not donate blood. Basically, it said that you should be in good health. People with CFS/ME often experience a range of symptoms that could be made worse by donating blood. Notwithstanding the problem of diagnosis and that the precautionary principle is exactly right, surely that is the point. There should be a common-sense approach that people with ME should not give blood because they are not well enough.
Earl Howe: My Lords, the noble Baroness has put her finger on it. On a precautionary basis, even though the risk is considered low to those with CFS/ME when they are without symptoms, it was considered appropriate to exclude them permanently from being blood donors in case it affected their own health.
Lord Skelmersdale: My Lords, my noble friend gave us the figure for total research into CFS/ME. How much was for biological research as opposed to psychiatric research?
Earl Howe: My Lords, I am afraid I cannot give that figure as it is not in my brief, but I will write to my noble friend.
Lord Turnberg: My Lords, is it not the case that we have not been able to discover the cause of this very unpleasant disease so far and we have no real effective treatments? While we are waiting for both of those, the best form of management seems to be cognitive behavioural therapy. Does he agree?
Earl Howe: My Lords, cognitive behavioural therapy is indeed part of the NICE recommendations, but only a part in so far as it is appropriate for any chronic condition to have such therapy. I am sure that the noble Lord agrees that the NICE guidance recognised a clinical and physical basis to this condition as well. Therefore, a multifactorial approach is appropriate.