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ME sufferer calls for urgent improved screening of blood donors

This is a guest post  by ME sufferer Christine Douglas who is campaigning for an urgent improvement for screening of blood donors in the UK similar to other countries in the world. She has called for an international collaboration on blood screening methods, which makes good sense to me:

If someone told you that a brand new human retrovirus (from the same family as HIV) had been discovered in patients with prostate cancer and myalgic encephalomyelitis (ME), and that scientists are close to explaining its link with these diseases, would two of your first thoughts be: how do you catch it; and is it in the blood supply?

If you then heard that several countries had deferred blood donations from people with a history of ME, as a precautionary measure until more is known about the virus, would you think it a pretty sensible precedent that others should follow?

Unfortunately, these are not hypothetical questions.

In 2006, the US Cleveland Clinic discovered the (somewhat inelegantly named) Xenotropic Murine Leukaemia Virus-Related Virus (XMRV) in secretions from familial prostate cancer tissue. In 2009, a tripartite team of US researchers isolated the virus in 67% of ME patient blood samples and 3.7% of healthy controls.

Disturbingly, in 2010, two subsequent UK studies failed to find XMRV in ME blood samples, although time may show that this was more a function of different cohort selection and test methodology than of the virus being refused entry to Britain. Indeed, US researchers are using their own protocols to find XMRV in the UK, with results from an initial phase due imminently.

In the meantime, the international AABB (ex-American Association of Blood Banks), Australian Red Cross, Canadian Blood Services and New Zealand Blood Services have deferred blood donations from people with a history of ME. In addition, the AABB has confirmed “an indefinite deferral of donors who have received a diagnosis of XMRV infection”.

In the UK, ME organisations and individuals have lobbied the NHS Blood and Transplant (NHSBT), the Department of Health, the Chief Medical Officer and a motley selection of cabinet ministers and MPs for a similar policy. To date, both old and new Governments have failed even to acknowledge that XMRV is a potential risk, let alone adopt the precautionary principle and act on the matter.

The NHSBT’s position on this (for which permission to repost had to be gained under a Freedom of Information request) is that “….people who have previously been diagnosed with ME are able to donate blood once they have recovered and are feeling well. There is no set timescale for this, and no additional diagnostic tests are carried out before they can donate blood”.

It seems that the NHSBT has forgotten its ‘virology 101’: you do not recover from a retrovirus. It inserts itself into the host’s DNA. Regardless of how well you feel, you have the virus for life or until science finds a way to get it out of your gene structure.

Granted, the evidence has not yet been published to prove that this retrovirus will harm you but, given the contaminated blood scandal of the 1970/80s and the ongoing vCJD debacle, would it not be prudent to defer donations from all ME patients and anyone who is XMRV positive, just in case?

The issue, however, goes beyond simply protecting the blood supply. It is also about Government being seen to be aware of XMRV and to be taking a proactive stance on its research and management. In the absence of this, frightened and frustrated patients will mount their own communications offensive to force a response. Whether this is via the internet or through demonstrations at blood donation sites, it is likely to be crude and alarmist and encourage public panic rather than public support.

A simple Government statement on donation deferrals, plus confirmation of international collaborations on blood screening methods, would go a long way towards diffusing this groundswell of anger, as well as protecting the blood supply.

If the new Government continues to ignore XMRV, however, it could find itself facing not only another blood contamination and public health disaster but also growing civil unrest, and all before its first year is out.

*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.


38 Comments

  1. gary turnham

    hi all fellow sufferers nearly 4 years for now many struggles to get the proper diagnosis and benefits now sorted , this a great article and it warmed my heart to know there are such good folks out there now listen to this i read about the xmrv virus and thought i had better be tested for it so i went to my GP general practioner who is not so old and asked if i could be tested ,bearing in mind there 80 ME sufferers in there care here ,the GPs reply was ” i have never heard of the xmrv virus is that real ” ! i was dumbstruck and told the GP to go look it up and get back to me .A few weeks later i had a call from the gp who said it was not available in the UK i would have to go to the USA for testing at my own cost !HA i have’nt worked for 3 years DOH . PS . i was a HOSPITAL OPERATING DEPARTMENT PRACTIONER for 17 years ……….god bless all…….

  2. keith Baker

    Great article and writing. A group of us in the US are fed up with the CDC and HHS shananagins. We are starting to organize to protest at local bloodbanks and HHS offices. If the government does not let the Alter study be published with it’s original findings and start screening the blood supply soon I am willing to bet protests will begin nationwide.

  3. Christine Douglas

    Sorry, that should read Jumoke. Bad brain day.

  4. Christine Douglas

    Numoke, Matthew and nmj raise an interesting point that there are probably more unknown pathogens in the blood supply than there are known ones. Just a lay person’s view but perhaps it’s time for a more holistic review of how blood supplies are managed.

    Numoke, I wonder if you saw this article about XMRV and the blood supply in Nigerian Punch?

    http://www.punchng.com/Articl.aspx?theartic=Art201006260592150

  5. I had Coxsackie B4 and I agree with Matthew. Even before the XMRV findings – and they are still ‘findings’- we still do not know for sure the causal link with ME – blood donation should have been strongly discouraged. And apart from anything else, I have never felt robust enough to give away my blood.

  6. Christine, many thanks for the links and responses you have made. It’s great to entend this discussion throughout Europe.

  7. Christine Douglas

    The blog has been translated into German by Regina Clos and hosted by CFS/ME Aktuell. Dankeschon, Regina.

    http://www.cfs-aktuell.de/juli10_6.htm

  8. That’s really shocking that someone who knew she had ME and had tested positive for a virus went straight off to donate blood. It should really be common sense that you don’t give blood if you’re ill. Could Dr Peterson have called the blood donation people and told them to turn the lady away?

    Still, if they screen blood for XMRV then that will not screen it for all the viruses with a strong link to ME, particularly the Coxsackie enterovirus group.

  9. For any of the doubting Thomases reading this read this article published in the New York Times today

    Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry
    By DAVID TULLER
    Published: July 14, 2010

    http://www.nytimes.com/2010/07/14/health/14fatigue.html?_r=2

  10. Thank you Ellee and Christine, for highlighting this important issue.

    A retrovirus was linked to ME/CFS 19 years ago, by a young researcher named Elaine DeFreitas. The research was verified by another group of independent scientists when the CDC suddenly pulled the rug from under her. She was unable to acquire further funding and the retrovirus issue languished.

    Now, 19 years later the CDC is attempting to do the very same thing. Two other arms of the US government, the FDA and the NIH have found XMRV in the blood of ME/CFS patients; verifying the initial study by Lombardi et al in October 2009. Shockingly, this positive study was pulled on the eve of publication on the request of the CDC. Now it is anyone’s guess if this research will see the light of day.

    Recent reports (from the leaked study) suggest that between 3 – 7% of the general population may already be infected. That’s 1 in 14 people. Can we really afford to wait?

  11. Christine Douglas

    I think Heath and Matthew are ‘agreeing violently’ that it shouldn’t have taken XMRV to justify deferring ME sufferers from blood donation.

    Also, just a correction on proving causation. Drug trials are not necessarily the quickest way to do this and, indeed, US researchers are developing an XMRV disease model based on the known pathogenesis processes of other murine leukaemia viruses (MLVs).

  12. I also failed to say, causation can take years to prove, and the easiest way to prove it is to do drug trials.

    The issue here is, without acceptance of association first, and that XMRV is visibly within the publics blood supply, we cannot move onto the drug trial stage to prove causation.

    Heath

  13. Hi Matthew,

    I guess the issue is people with ME can be undiagnosed and misdiagnosed of years, I was. How do you know whether I donated my blood during this period of diagnostic limbo? And if I have done so, I would have potentially infected the blood supply unknowingly. Someone only has to do it once, and it’s in there.

    But just as importantly, at up to 7% blood donation prevalence rate, nearly half a billion ‘healthy’ people whom are either misdiagnosed, or undiagnosed, would also be unknowingly adding a new human retrovirus to the blood supply.

    The other issue is, governments, particularly in the UK and US, won’t admit ME is a blood born contagion, even though I have written evidence from the states suggesting it was in the early 1990‘s. Don’t you think this is the wrong message when diagnosing new sufferers, and educating the public? I have never been told not to donate my blood by a health official. Does that not sound wrong to you? It is all about public awareness, and even sufferers receive little or no information or advice.

    One anecdotal story is, Dr. Dan Peterson of the Whittemore Peterson told how he tested a ME sufferer for XMRV, and she was positive. Upon receiving this news, the lady said, without knowing her folly, I’m off to donate my blood now. He said this wasn’t a very wise decision, she replied that she has done so on numerous occasions, and is compelled to ‘do her bit’!

    And I bet there are hundreds of examples of this happening as we speak.

  14. It’s by no means certain that XMRV does in fact cause ME, and certainly not that it causes all ME – enteroviruses, similar to the polio viruses, have been definitively linked to ME for decades and outbreaks of ME in the past have been called “atypical polio” and people affected by some outbreaks were unaffected by subsequent polio outbreaks.

    While screening blood for this retrovirus may be a good idea, it should not have taken until now for people with ME to be excluded from blood donation (that is, those who could make it to the place of donation; many either couldn’t make it or couldn’t justify expending the energy). Let’s face it, if you have a debilitating illness of unknown origin, would you want to give your blood to someone else anyway?

  15. V. interesting post. Even before the XMRV debate I would not have considered giving blood, and I would certainly not be happy receiving blood from an ME sufferer. I speak as someone who has had virally-induced ME since 1984.

  16. I agree with you. I am a practising doctor in nigeria, and I keep repeating that blood transfusions should be avoided as much as possible. Even for the diseases that have been publicised, the screening tests are not hundred percent sensitive. We had a bad case of a one year old transfused with HIV positive blood! Wasn’t a good story at all.

  17. Christine Douglas

    This blog has been mentioned on the website of an upcoming cinema documentary about ME and XMRV. It is called ‘What About ME’ and is made by Susan Douglas (no relation) of Double D Productions.

    http://whataboutmefilm.blogspot.com/

    The url below has two trailers for the film: one for the UK; and one for the US. Both provide a quick overview of ME for those new to the disease, with the US version providing further background to XMRV.

    http://www.whataboutme.biz

  18. Christine Douglas

    Daisy, good luck and best wishes. I’m sure there will be many following in your footsteps over the coming months and it can’t be easy.

  19. Great blog, Christine!!

    It has been my opinion as a fellow ME sufferer that the UK are loathed to open communications regarding the safety of our blood supply due to XMRV. My thinking is that a statement of admission that ME/XMRV poses a serious risk regarding contamination, and infection, would open a huge can of worms for a government whom have not spent one penny on biomedical research into ME, a disease that as a recorded history of several decades, or probably more.

    Dr. John Coffin, the eminent retrovirologist has suggested XMRV has been within humans for at least 50 years, so it would be an amazing stroke of luck if this illusive retrovirus isn’t already swimming in our blood supplies.

    Also, with no diagnostic procedure to test for ME, many people remain undiagnosed for months, if not years, giving them ample opportunity to indirectly infect the blood supplies should they had chosen to donated blood.

    If the NIH/FDA leaked estimations that up to 7% of the US blood donor population is carrying XMRV, how many people are ticking time bombs in the UK, and how many of these people have donated their blood too.

    It is a frightening prospect, and one no government has any control over, which could explain the deafening silence.

    I will leave you with a news report which was done in the US in 1996. Take special notice of the then assistant secretary of health’s remarks regarding the cause of ME (or CFS as they put it):

    If a retrovirus was suspected then, why was nothing been done since, and how many people have succumbed to disease since 1996 through obvious ignorance? This video proves plausible denial just doesn’t cut it anymore.

    Heath.

  20. DAISY888

    The threat of XMRV is very real, it is not just in ME/CFS, but is also being found in Fibromyalgia, A-Typical MS, some forms of Autism and prostate cancer.

    XMRV is also in the UK, how do I know? I am XMRV positive. I am just going through the unenviable experience of having my husband and children being tested to see if they are infected also.

    The blood supply must be protected, what is the harm of deferring ME/CFS from blood/organ donating until more is known about XMRV? There are an estimated 250,000 sufferers of ME/CFS in the UK, surely it is better to err on the side of caution as have Canada, Australia and New Zealand. Do not make the same mistake as was made with HIV/AIDS, the downside could be far too costly for each and every one of us.

  21. Wanted to point you all in the direction of this excellent article by my good friend Chris Douglas .Please add to the comments as this is an article on the blog of Ellee Seymour MCIPR, PRESS CONSULTANT, JOURNALIST, POLITICAL AND PR BLOGGER. No doubt it will be read by polititons in the UK .

    Chris makes a very good argument for the implementation of screening the blood supply . Concise and straight to the point .Well done Chris brilliant write up
    wildcard

  22. Sabrina

    Thank you for this wonderful article. I wonder why the UK main stream press hasn’t picked this up yet.

    They were all over swine flu and bird flu and what not!

    This affects the whole world, in fact it’s even more bothering for the yet healthy carriers. They stand to lose a lot more!

  23. Caro R

    This is such an important issue. Thank you Ellee and Christine for highlighting it.

    We are now waiting for the publication of the US Government’s Food and Drug Administration paper on their findings of XMRV in CFS patients. After the WPI ground breaking work published in “Science” last year, it now has to be only a matter of time before this issue is brought to public attention – and more importantly to the attention of those who can devise a treatment.

  24. Jane Clout

    Nobody would chose to have ME. In the early 90’s I nursed terminal AIDs patients. This disease can be as bad as AIDs, until the last two weeks of life. The difference is that you do not die quickly. And then as Christine said, XMRV may also be the causation of many other illnesses that we do not understand fully at present, such as Alzheimers Syndrome, Autism and ADD. It is known to be implicated in aggressive Prostate Cancer and Myalgic Encephalomylitis.

    It is long past time to try and contain the XMRV epidemic. We cannot afford not to.

    ME has been swept under the carpet for decades. If it had been investigated honestly in the past, there would be far less people infected now. We really have a major problem now, which should have been dealt with years ago.

    The silver lining is that if the research is right, we may have an opportunity to improve public health dramatically, particularly at the end of life and in childhood. Wouldn’t that be good?

  25. Thank you very much indeed for this timely post. Here in Malta we’re also waiting for the government to take action on protecting the blood supply. Unfortunately they tend to follow the UK govt on such things. People here with ME are ineligible for all government benefits as the illness is not recognized and they really suffer.

  26. Jo, yes, many thanks to Christine for contributing this insightful post. I’m sorry for everyone who suffers from ME and are no longer able to live their former active life.

  27. Jo Best

    Great post Ellee. Thanks to you and Christine for highlighting this important public health issue. Contrast the complacency of the government’s response to the banning of blood by people with M.E/CFS with the recent potential threat of swine flu.
    XMRV is a newly-discovered retrovirus, one of only three known to infect humans. One of these is HIV, which can lead to AIDS. The other is linked to leukaemia. Any government that considers public health to be important should follow the example of Canada, Australia and New Zealand in banning blood donation by people with M.E/CFS as a precautionary measure at the very least. Thanks again.

  28. Christine Douglas

    Hi CherryPie, it could be possible that your friend’s illnesses were linked. Some people with ME do improve (although many consider this a remission rather than a recovery) but sufferers can relapse quite badly, sometimes with new and more severe symptoms.

    Two of the most common causes of death with ME are lymphoma and heart failure. In the US, the latter is being researched in the context of diastolic dysfunction, a relatively new area of cardiomyopathic medicine.

    US researchers are also looking at disease causation models for XMRV in cancer (prostate, breast and ovarian, as well as lymphomas) and also in neurodegeneration (such as that seen in Parkinson’s and MS).

    We hope that more will be published on this later in the year.

  29. Very interesting, thank you.

    One of my close friends suffered from Me and it was most awful to see. Over time she did recover but later in life she developed another serious illness. This post makes me wonder if the two were related in some way.

  30. It was my pleasure to highlight this important issue. I hope it helps make a difference.

  31. Tricia

    Thank you for highlighting this issue. As a carer for someone suffering with ME, I know that this is an extremely debilitating illness. It is unfortunate that there is no political or medical recognition of this in the UK; to expose the wider population to the risk of this illness is unthinkable. I hope that the Government will follow the example of Canada and Australia and act now.

  32. Barbara Kell

    Well james you better hope you never need a blood transfusion which as it stands may give you XMRV. would you be responsible for that?
    Something you could then pass on to your loved ones.

  33. If this was only a problem. Unfortunately it is a public health crisis. The government has no choice but to get involved. Right now, all they are doing is wasting time, and potentially infecting more and more people. People who are not necessarily able to check the blood they are about to be given when undergoing an emergency operation, for example. The responsibility to protect the blood supply is in the hands of the Government.

    Great post Ellee. Lets stop them making another 250.000 in the UK sick.

  34. You can’t expect the government to shoulder every problem that comes up. People should be careful in everything that they do.

  35. Great post, Ellee – those of us with ME are horrified that the UK government hasn’t acted to protect the blood supply. It’s bad enough having a devastating illness; it’s awful to know that many people might be prevented from getting it if our government took this new research as seriously as other governments across the world. Swift action is needed.

  36. I wonder what organization will ever be called upon to explain why those experiencing Multiple Chemical Sensitivity symptoms should be deemed not physically ill but “mentally ill” while at the same time having their blood donations rejected due to this virus? … the international AABB, Australian Red Cross, Canadian Blood Services and New Zealand Blood Services have deferred blood donations from people with a history of ME.

  37. Barbara Kell

    Fantastic Chris,
    you have put into words what we are all so worried about. I am waiting to be tested for this virus. If I am positive, have I already passed it on to my loved ones or anyone come to that?
    I know who I’d like to pass it on to.
    If i feel good tomorrow can I go and donate blood? Apparently the answer to that is yes.
    My daughter is/was a blood donor, but is now worried she may be passing on something she has no knowledge of being a carrier of, because there is NO SCREENING.

  38. Fantastic article regarding the very real threat of the newly discovered retro virus XMRV. I cannot reiterate enough the potential consequences of ignoring XMRV , if nothing is done or seen to be done soon then yes the new government will be faced with possibly the biggest blood contamination story in history. German scientists have also isolated the virus in the respitory tract of transplant patients . This clearly indicates that XMRV has the potential to be transmitted through blood , blood products and also organs . A frightening prospect yes I know . I therefore hope the government will act on this as a matter of urgency and in the meantime it would be a sensible move by anyone who has ever been given a diagnosis of ME/CFS to defer from donating blood and I would also say from donating organs , even if they feel well or think they have perhaps recovered. As the author states XMRV is a retrovirus therefore it inserts into your DNA . You therefore have it for life . There is a positive XMRV study due out any day now from the NIH/FDA in america hopefully this study will be the gamechanger and XMRV will be given the recognition it deserves . I urge everyone to educate themselves on XMRV and the possible consequences of having such a virus .

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