Starts at 54 minutes.
Evan Davis: Patients with ME. Myalgic encephalitis [sic], or chronic fatigue syndrome, will no longer be able to donate blood in the UK. New safety guidelines from the NHS Blood and Transplant Service say not only should they not donate when they’re feeling unwell but they should also not donate when they’re feeling better. But why, exactly?
Well, Dr Charles Shepherd’s the medical adviser to the ME Association and joins us. Good morning.
Charles Shepherd: Good morning, Evan.
ED: And the blood service says it’s for the benefit of the patient.
CS: Well, there’s two strands here. First of all, for the benefit of the patients, there is an existing ban on people with this illness giving blood because it’s clearly not sensible for people who are ill in this way to be giving blood. And, secondly, because we know that there is a role for infection in this illness, a lot of people, most people, start this illness with infection, a variety of infections are involved, but we also think there may be a role for persisting infection and reactivated infections that are already in the body so that is why we have an existing ban but the extension of this ban really comes in because of a newly… it’s not newly totally discovered, but there’s new scientific interest in a retrovirus, an HIV-type virus, called XMRV and this virus was first linked to prostate cancer in 2006 and then a paper came out in Science this time last year linking it to ME/CFS so I wrote to the previous Chief Medical Officer, because I’m part of his working group on ME CFS, that was Sir Liam Donaldson, and said that this ban, existing ban, really should be extended to a lifetime on anyone who’s had this illness and has recovered from it.
ED: So you support the ban.
CS: Oh, we fully support the ban. We asked for the ban to be extended, yes.
ED: What’s interesting is… is that the press release, the statement, from the Blood and Transplant Service doesn’t say anything about it being to protect recipients of donated blood. It implies it’s all about the condition of the patients and possible relapse, becoming ill again and it’s better to protect them by not letting them donate blood.
CS: Yes, I suspect the Department of Health are being rather cautious here and, to some extent, one can see their point. I don’t think they want to, you know, cause panic amongst the population…
CS: ….but you know, at the moment, there are many questions relating to this newly discovered retrovirus and, as I say, it is an HIV-like virus. It does also appear to be in low numbers in the human healthy population so there’s a lot of work being done by the retrovirologists to try and discover the answers to these pressing questions as to whether this is a disease causing virus, how common it is, what other diseases it’s associated with and we still don’t fully understand actually how it’s transmitted. So at this point this is what we feel this is what we asked for. It is a sensible precaution in the circumstances and it’s not something that only applies in the UK. Other countries (Canada, Australia, New Zealand) have also, in recent weeks, introduced blood bans for people with ME.
ED: And so it’s probably something to do with this XMRV virus. Well, Charles Shepherd, thank you very much for explaining all that to us. Thanks.
[With thanks to Chris Douglas for obtaining this transcript]