Ellee Seymour MCIPR

This is a guest post by Christine Douglas who is updating us on the important issue of blood donors who have ME which she first highlighted in this post three months ago, and it attracted many comments and widespread interest. Christine is actively campaigning for urgent improvements to be made for the screening of blood donors in the UK and has called for an international collaboration of blood screening methods.

This is her report:

On 8th October, the NHS Blood and Transplant (NHSBT) issued a press release stating that people with a history of myalgic encephalomyelitis (ME) will be deferred indefinitely from donating blood in the UK.

Much like the curate’s egg, this news is good in parts. Recognition of the need to protect the blood supply from viral pathogens that potentially cause ME is a definite triumph of common sense over denial. The statement that this is not the main aim of the ban is less so.

As reported on Ellee’s blog in July, the NHSBT had been lobbied to change its policy of allowing ME patients to donate blood “once they have recovered and are feeling well” to one of a lifetime ban. This was in order to protect the blood supply from further potential contamination with XMRV, a newly discovered human retrovirus linked with ME, and one which is carried for life. Australia, Canada and New Zealand were cited as countries whose blood services had adopted the precautionary principle and deferred donations from ME patients in order to minimise this threat.

In the UK, however, the ban is allegedly aimed at protecting the blood donor’s well-being and not at preventing the recipient’s infection with a retrovirus. In addition, although the press release does refer to the original study that isolated XMRV in ME, its findings are rejected by saying that: “Further studies by the Centres [sic] for Disease Control in the US and a number in Europe have failed to demonstrate a link between XMRV infection and CFS [ME]. Currently there is no epidemiological evidence of a link between XMRV and CFS [ME] in the UK.”

Whilst it is true that the US Centers for Disease Control and Prevention (CDC) could not find XMRV in ME patients (or in the control group), their research methods have been greatly criticised, with one ex-CDC researcher saying: “..this was a study designed to not detect XMRV using a hodge-podge sample set.”

In addition, the NHSBT press release fails to reference the parallel (and more highly acclaimed) research by the US Food and Drug Administration (FDA) and National Institutes of Health (NIH), published in the prestigious Proceedings of the National Academy of Sciences (PNAS) and co-authored by Harvey Alter, discoverer of hepatitis C. The PNAS study found murine leukaemia virus (MLV)-related viruses (which include XMRV) in 86.5% of US ME patients and 6.8% of healthy controls (who are also blood donors). The paper states that these “results clearly support the central argument…that MLV-related viruses are associated with CFS [ME] and are present in some blood donors.”

Further research from the US, this time involving their National Cancer Institute (NCI), and presented at the 1st International Workshop on XMRV in September, identifies the retrovirus in 60-70% of UK ME patients and 4% of healthy controls. These UK specific data were also omitted from the NHSBT press release.

It is not clear why the NHSBT is ignoring or dismissing studies that do find XMRV in ME (and in blood donating controls) in favour of those that do not. Perhaps they are unaware that many of the negative studies (including “a number in Europe”) have been criticised repeatedly for using either poorly defined ME cohorts and/or ineffective test protocols. Perhaps the NHSBT believes the ‘denialist’ contention that the positive studies are simply finding viral contamination from lab mice, even though an anti-body to a human retrovirus can not be a cross-contaminant of any sort.

Or perhaps they are merely trying to avert public panic whilst busily working behind the scenes to secure the blood supply, maybe collaborating with the US Department of Health and Human Services in its development of a standardised blood test for XMRV, or with Cerus, a corporation whose INTERCEPT blood treatment product has been shown to inactivate XMRV in platelets and red blood cells.

Sadly, this seems an unlikely scenario. In a written response to questions raised by Caroline Lucas (Green Party leader and MP for Brighton Pavilion) about XMRV in the UK blood supply, Health Minister Anne Milton stated that: “In a recent unpublished pilot study conducted by the [Health Protection Agency study] group a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.”

Whilst this result may be a convenient self-fulfilling prophecy for the NHSBT, it is completely anomalous to the growing number of rigorously peer reviewed papers, published in pre-eminent journals, which are showing XMRV in healthy people. In particular, the NCI’s co-authored finding of XMRV in 4% of UK controls would extrapolate to 22 people in the HPA’s pilot study and over 2.5 million people in the total population.

Until the HPA’s research is published, it is impossible to say for certain why its findings differ so markedly to those of the US ‘premier league’ scientists, but a safe bet would be that it simply did not use the same proven detection methods as its stateside counterparts.

Why is this? Why is the UK ‘establishment’ so reluctant to accept the presence of XMRV in either its sick or healthy population and why will those involved in the science not replicate the exacting test methods used in America?

Could it be (as one US medic has suggested privately) that “The British professor class are nothing if not proud and egotistical” and do not want to be trumped by a former colony? Or could it be that the Government is not yet prepared to admit that the blood supply is already contaminated with an uncontrolled infectious agent for which they would be held to account, both morally and financially?

Whatever the reason, whilst the Government continues to prevaricate on all things XMRV and ME patients watch for a flicker of a proactive response, those who were infected with HIV and hepatitis C via contaminated blood 30 years ago must wonder if they are carrying yet another pathogen that, once again, the UK does not appear to be taking seriously.

*Christine is an ex-management consultant with a degree in business studies and a masters in environmental technology. Her career was cut short due to ill health and now she ‘volunteers’ for a few hours a week. She lives in an old house in the South West and is in a long-term relationship with her bed. She hopes that the XMRV discovery will lead to effective treatments for herself and millions of others worldwide.

*The Daily Mail today reports on the 2,000 dead – and still no justice for the victims of Britain’s blood transfusion scandal which I highlighted on this post.