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.â€
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.â€
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.â€
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 Europeâ€) 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.â€
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.
Thank you once again Christine for your excellent article.
You have highlighted all the points which the ME community feel so strongly about.
Let us please be given the correct reason we are being banned from donating our blood. The responsible position would be to admit that we as a nation are trying to protect the blood supply from any further contamination.
The controversy over the XMRV studies needs to be put to rest. Get our good friends from the USA to come over and show our scientists how to find the virus.
Are our scientists open minded enough to recieve HELP. Or is it as Christine remarks.
“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?”
If this is truly the case there are some despicable people out their playing with the lives of the ME sufferer and also playing Russian Roulette with the lives of the healthy community.
Christine you are a wonderful patient advocate. Thank you for all you do for us.
Hi Barbara, thanks for your comments. I agree that the controversy about XMRV needs to be resolved but the UK seems unwilling even to get to the first base of developing a reliable blood test for the retrovirus. At a meeting of the National Expert Panel on New and Emerging Infections Subgroup on XMRV (held on 7 May 2010 and attended by two HPA reps) it was minuted that: “A serological assay would be the most useful detection tool to screen populations for infection. Members were informed that there is already collaborative work ongoing with the HPA to develop such an assay but that this work is limited by resources, and there has been no specific funding earmarked for this activity.†If this assay has not been developed yet, how has the HPA been able to test 540 blood donors for XMRV?
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@ab/documents/digitalasset/dh_118427.pdf
Seeing as you brought NEPNEI up Christine here is another part of Anne Milton’s letter:
“The National Expert Panel on New and Emerging Infections (NEPNEI) undertook a thorough assessment of the scientific data in June 2010 and concluded that although XMRV can infect humans, there is currently no evidence that it causes disease in humans. NEPNEI’s view is that development of a robust diagnostic tool to detect infection accurately is a priority for further investigation of this infection. Further work is required to investigate which human tissues are susceptible to infection, the epidemiology of infection and whether this infection is of any public health significance.
Both NEPNEI and the Advisory Committee on the Safety of Blood, Tissues and Organs have considered the current evidence and have recommended that no public health action is required at this time. However, the situation will be monitored closely.”
i agree Christine… how on earth can they ‘ develop a robust diagnostic tool’…make it a ‘priority for further investigation of this infection’ and ‘monitor the situation closely’ if they aren’t putting any funding into it!…it’s a joke but we aren’t laughing!
I’ve just noticed all Anne Milton did was copy and pste from the pdf file you linked to above…Grrrr!
Thank you Christine for a very well written article. I especially liked that you have linked to the papers you give reference to, further backing up your statements and also enabling the reader a way of accessing all the relevant facts and data giving us the ability to establish an informed opinion on this issue.
This really is a very serious issue to EVERYONE not just those with M.E. No-one knows when an accident might befall a family member or friend. They may need a blood transfusion and knowing that there is a high possibility that the blood they receive may do them more harm than good is an incredibly scary thought. The Government may well be wanting to avoid a public panic but by not revealing their true reasons for placing a ban on M.E. sufferers from giving blood they are in reality covering up something that should be public knowledge by now. We cannot allow this to continue!
It’s four years now since XMRV was discovered and a full year since the Science paper, revealing that XMRV is not only being found in M.E. patients but also in healthy controls. The lack of reporting on this issue in the UK media is beyond belief and reprehensible!
I have a letter I received in August, in response to my concerns about the UK blood supply and XMRV, from Anne Milton (Parliamentary Under Secretary of State for Public Health) in which she states:
“Whilst the purpose of [the ban]is to protect the donor’s health from any possible harmful effects from donating blood, it will also minimise the likelihood that donations from people who have ever suffered from CFS [M.E.] could enter the blood supply.”
This statement shows clearly that the Government are taking the possibility that the retrovirus XMRV may cause disease seriously, even though they won’t admit it and publicly announce the true reasons for the M.E. blood ban and that there is the need to take precautions to minimise it entering the blood supply. Admittedly no-one is sure if XMRV is disease causing yet and therefore the reason more research needs to be funded and carried out to confirm or refute it.
Thank you again Christine for your interesting and thought provoking article.
christine
I wish I was as well informed and up to date with all the on going news in the ME world. All I see is the results of the patients suffering,because they are denied recognition and medical treatment.
Another great article by Christine, it beautifully illustrates what ME sufferers are up against. By not replicating and implementing the testing techniques of the WPI/NCI & Cleveland Clinic the UK are clearly illustrating that they are not serious about attempting to find XMRV in this country. Not finding it doesn’t mean that it is not here, it means that they are not prepared to look for it as XMRV is here. I live in the UK, I am sick with ME, and I am XMRV+, my sample is not contaminated, they cannot put both a virus and an immune response into my blood sample. The science on XMRV is at its infancy and so much work needs to be done…we need to find out more about this retrovirus and establish cause and find effective treatments. W also need to stop this spreading, it is easy to ban ME patients from donating blood (even using the excuse that it is for their own benefit), but what about those who are currently well with XMRV and donating blood, they far exceed the number of ME sufferers and until a reliable test can be brought in by scientist working together, our blood supply will sadly still be infected.
Well done, Christine, another excellent article on XMRV – clear, concise and well-referenced. I echo Barbara’s sentiments, you are indeed a superb patient advocate. Thank you so much.
I am happy to facilitate this debate because I believe it is very important and it clearly makes good sense to have international collaboration on blood screening to protect patients. Thank you Christine for highlighting the latest updates.
An exellent article from Christine Douglas .Very well referenced , informative and raising several pertinent questions that need to be addressed asap . Personally I believe the government is stalling for time on this issue . As a country we are not exactly in a healthy position financially to have a retrovirus on the loose . However im sorry but i think peoples health and the health of the nation should take priority over financial issues and politics . It is time for honesty and transparency , the damage has already been done , and more damage will be done unless this issue is dealt with as a matter of urgency .
Thankyou Elle for continuing to support the issue of XMRV and a huge thankyou to Christine Douglas for writing such an excellent article , It is people like you who will make a huge difference to peoples lives .
A brilliant report Christine!!! Totally agree with Carole that it is excellent how you have linked the papers on the subject therefore giving readers the chance to easily read them for themselves and also to remind us sufferers of these.
I cannot help but feel that the uk are WELL aware of XMRV and the threat to the blood supply and are indeed stalling for time until they figure out how to handle it. To try and prevent public panic before they have a course of action figured out. No good of course for the many who are receiving blood transfusions and could be receiving tainted blood. What gets me is the line that the blood ban for M.E patients is for our “well being”. It just does not wash with me. If that is the case then do they ban people with depression from blood for their “well being”, no, only a viral link would stop them from wanting us to give blood.
There is of course that good old british pride and maybe they do not want to be told of XMRV and its link to M.E by the scientists in the U.S, they want to discover it for themselves but sadly country pride will harm thousands of lives in the meantime. How they ever think they can hoodwink us into believing they really care about our well being by not donating blood is beyond me.
Excellent article Christine, thank you so much for writing this :o)
Or could it be that the Government is not yet prepared to admit …
You’re on the right track there.
Two further questions have been asked by David Anderson (Labour MP for Blaydon) and Sharon Hodgson (Labour MP for Washington and Sunderland West). The former asked if the Government “…will provide funding for research on the relationship between [anti]retrovirals and myalgic encephalomyelitis and “…if the Department of Health would be screening blood held in blood banks for the XMRV virus”. The latter asked “…whether the Department would be removing from storage blood donated by people with ME.”
The Government’s replies were (respectively): that is the Medical Research Council’s responsibility; no; and no.
http://wp.me/p5foE-3bx
At some point, the Government is going to have to come up with something more convincing than this.
Another great article from Christine, exposing the shameful truth about the blood ban in the UK.
If ME truly was a psychological condition, why would donating blood possibly hurt patients?
The word “cover-up” has been beaten to death in discussions but that doesn’t make it any less appropriate.
Thank you Ellee Seymour for providing a platform for the facts and questions that really matter.
Thanks, both Ellee and Christine, for covering this important topic. It’s amazing to me that investigative journalists in the UK aren’t all over this story – a new human retrovirus! And probably already in the blood supply!
Many UK patients with ME have sent their blood to the lab that made the original discovery for testing and most have come back XMRV positive. The government’s line that XMRV isn’t in the UK is ridiculous.
People with this awful disease don’t want others to get infected. The UK government should be throwing millions on research; last year, they gave £109,000. Pitiful.
I feel really strongly about the lack of honesty by the Department of Health and am organising a protest on Nov 1st to coincide with the start of the blood ban.
We patients are paying for private XMRV testing. The NHS and DOH are offering no support to people with ME and to add insult to injury, we now have been told that the ban on giving blood is in case we suffer a relapse.
My website is http://www.notsonice4me.co.uk and I hope to see some of you at the protest (lunchtime start).
Annette Barclay
Hi Sasha, your point about the lack of (particularly mainstream) media coverage is a good one and may have arisen because the Science Media Centre (SMC) (an independent organisation which advises on science stories) has based a recent press release on the opinions of two UK researchers who claim that XMRV is simply lab contamination. It would serve both the SMC and the UK media better if a more comprehensive summary of the facts were provided rather than merely the opinions of two researchers in isolation (one of whom has been unable to detect XMRV themselves and who has made disparaging public comments about those who can). Given that there are now two very strong positive papers in the US (one from two Government departments) and that their Department of Health and Human Services is looking at standardised assays and potential blood screening methods for XMRV, I would suggest that it is time for the SMC (and other media organisations) to look outside of the UK for their information on this subject. It would certainly make for more responsible, reliable and balanced reporting.
Nice article Christine very good information I like it thank you for writing this article.