XMRV update: comment from Professor Tony Pinching

Since the original study suggesting a possible link between CFS/ME and the XMRV retrovirus, there have been six published reports from reputable groups in three continents that have failed to find evidence of this virus. These studies have used appropriate techniques in well characterised CFS/ME patients. One study found evidence of two different retroviruses, the significance of which is unclear.

Four very recent further studies (two of them including as author one of the original commentators on the first report) have provided strong evidence to suggest that laboratory and/or reagent contamination are the likely explanation for the original findings.

The current view of informed observers is that the research evidence does not support the idea that XMRV or other retroviruses have a role in the causation or manifestations of CFS/ME. This type of virus is especially liable to be found as a result of inadvertent laboratory contamination, and there is now direct evidence to support this explanation. There is an ongoing study in which samples from the same patients are sent to multiple laboratories, and this – together with the latest reports – may conclude the matter.

There is currently no basis for using tests or treatment based on the initial findings in clinical practise. The original findings raised high expectations, but the hopes now seem to have been dashed. We have been here many times before.

Professor Greg Towers, an author of one of the recent studies comments appropriately in a press release. “Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome. All our evidence shows that the sequences from the virus genome in cell culture have contaminated human chronic fatigue syndrome and prostate cancer samples. It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause – we cannot answer that yet – but we know it is not this virus causing it.”

The main benefit of the episode has been an increased awareness of the need for more substantial understanding of the biological basis for CFS/ME, and for better tests and treatments. For the CFS/ME community, the strong health warning must be not to rush to embrace new research findings until they have been confirmed.

Professor Anthony J Pinching

21 December 2010

Prof Pinching is a medical advisor to the Sussex & Kent ME/CFS Society

www.measussex.org.uk

16 thoughts on “XMRV update: comment from Professor Tony Pinching”

  1. ‘The main benefit of the episode has been an increased awareness of the need for more substantial understanding of the biological basis for CFS/ME, and for better tests and treatments.’

    I could have told Professor Pinching this in 1984.

  2. Sorry, but that it incorrect. There are many views from those informed on this research. In fact their really is two sides. Those that say it is associated, those that say it is not – but have not proven it is not.

    When Pinching says, “This type of virus is especially liable to be found as a result of inadvertent laboratory contamination”, yes if you contaminate your samples with a mouse retrovirus. But MLV-related retroviruses (such as XMRV) has not been proven to be a mouse contaminate. Therefore hopes have not been dashed, as Pinching would like to claim.

    His use of the quote from Towers is misleading, for Towers cannot come to such a conclusion based on the evidence. His findings of contamination in his own samples, cannot be expanded to the positive studies. As John Coffin has said in his interview for the Wall Street Journal:

    “But John M. Coffin, a retrovirologist and a co-author of two of today’s Retrovirology papers, told Health Blog that while his groups’ studies demonstrated that mouse DNA is everywhere in labs, none of today’s published papers ”definitively show that any prior study is wrong”

    and Robert A. Smith who wrote the commentary:

    “…told Health Blog that the possibility of contamination means that future studies must be done very carefully before conclusions about disease association are made. But he said he is unwilling to state that the reported link between XMRV and CFS or prostate cancer is no longer viable.”

    To sum up Pinching is not playing fair.

    PS.
    The findings were confirmed by Lo et al.

  3. Unfortunately I doubt that biomedical research will be funded for the simple reason that it is cheaper to deny the reality of the illness.
    Provided ME is not infectious and cannot pose a threat to society there is no disadvantage to the government of this approach which saves them money both in welfare costs and research funding.
    If the government had wished to find out about the biological basis of ME they could have done so years ago. Remember they acted immediately to protect the banks from financial collapse. So they can act rapidly when they wish. Instead they have kept patients and patient organisations going round in cleverly controlled circles for thirty years. The last APPG report found the same unmet needs and problems are being faced by patients that existed twenty years ago when I first became ill.

    The reason XMRV gave hope to patients was because an infectious organism poses a threat to society and sufferers must be treated out of pure self-interest – the only motive likely to impress the present government!

  4. Hi.
    Can the ME Association please ask the researchers who worked on the Hue paper if they can find some research funding to use to look for the biological basis of ME?
    They are clearly bright. Perhaps it would be constructive for them to follow up their initial interest in this topic by seeing if they can come up with an infectious agent if they do not think it is XMRV?
    This is a serious suggestion.

  5. Professor Greg Towers, an author of one of the recent studies comments appropriately in a press release. “Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome.”

    This “conclusion” of Greg Towers is both premature and unscientific. The only thing yesterday’s studies showed was that their samples were contaminated. They say absolutely nothing about the Science paper or the Alter/Lo NIH study. Indeed the Science paper included multiple methods of confirmation, and multiple methods to rule out contamination. Also the Alter/Lo study was delayed for publication because they specifically used Coffin’s test to test for contamination. They found none.

    The contamination-theorists have multiple holes in their argument. Not least of which is finding an explanation for how supposed contamination can produce an antibody response in the patients! Also why does the “contamination” seem to discriminate between the sick and healthy controls, even in blinded studies?

  6. Towers, the Wellcome Trust and Prof Pinching should all retract their statements. As they have now been proven to be false.

  7. Good morning.

    I happen to welcome Prof. Pinching’s comments and thank the MEA for publishing them here along with the previous and all subsequent articles relating to the Oxford and Welcome Trust findings.

    I am not medically qualified and neither to I claim to understand all the technical detail that others’ seem to and then delight in debating even to the extent that this results in personal condemnation of individuals whose views they happen not to share.

    The Professor and others are still promoting biological research and recent statements from Dr Shepherd and the MEA have concluded that the XMRV ‘link’ is something that will continue to be researched.

    It is I believe the comments from Prof. Greg Tower are what many are finding inflammatory and not the conclusions established by the research. After all it is not the only research that has challenged the initial WPI conclusions.

    Some have jumped all other the WPI findings. Some are sending their blood for testing. Some are taking retroviral drugs. Some are in their comments influencing vulnerable and desperate people herding them towards yet another hope.

    I ‘hope’ that a viral cause or even link is one day proven. If it is XMRV or another infection then it will need to be confirmed through unbiased research and any resulting ‘treatment’ if one can be found will need UK approval.

    Influential comments in the interim can be and indeed are damaging. Those that post them should accept responsibility for their effect.

  8. Currer – In no way is it cheaper to deny the illness!

    http://www.dynamic-med.com/content/7/1/6

    Assuming similar costs in other English speaking countries, we are talking economic costs of $500 billion+ (inflation adjusted) in the last 20 years in those English speaking countries!

    This is not cheap! Don’t repeat nonsense about CFS not costing the economy a huge amount of money.

    As for the Retrovirology papers, anyone who as actually read them will know they don’t ‘settle’ this debate. Smith, Coffin who were authors/co-authors of some of the papers in question have said as much.
    Interestingly several of the papers actually provide contradictory evidence on the potential source of contamination. Until the source(s) have been pinpointed, this debate will not end. Also note that the NCI team has demonstrated genomic integration of the XMRV in uncultured prostate tissue.

    I am still skeptical of both sides of the argument and am not sure what to believe until a clearer picture emerges. Thankfully XMRV research is continuing as planned in the USA.

  9. Firestormm, you state that you are not medically qualified. That is why you are not able to see that Pinching statement is a part of the same propaganda put out by the Wellcome Trust. They have proven absolutely nothing, but that you can contaminate your lab if you are not careful. Every scientist knows that, and most school leavers.

    The fact is that XMRV and other MLV-related retroviruses are a human infectious retrovirus. More positive studies are on the way, including those that show how it can be causing disease. Don’t be fooled by this shocking callous self interested attack. As John Coffin author of two of those four studies has said after the publication of them:

    “The argument for lab contamination as a source of XMRV is subtle and indirect, and not, in my opinion, conclusive,”

  10. Firestormm, one other obvious point for you to chew over. If you use a invalid test you will get 0/0 results (patients/controls). None of the negative studies found a contaminant, none of the positive studies found a contaminant.

  11. Currer, I can partly answer your last question.

    The UK Government (Medical Research Council) in the last 10 years, has spent £0 on biomedical research into ME.

  12. The telling fact in respect of the contamination “evidence” put forward in these papers, is that were it to apply to the Lombardi et al & Alter/Lo findings, it would have had to develop a way of selectively contaminating ME-cfs patient samples to a significantly greater degree than it does healthy controls!

    Until such time as researchers start to use the correct methods to detect XMRV /PMLRVs they will continue to get 0/0 results.

    It is now quite clear that whilst a reliable PCR assay is needed in order to conduct large scale testing of patient samples, this method has not yet been developed sufficiently to provide a satisfactory way to detect these viruses.

    Furthermore, the evidence suggests that co-culturing the virus in the presence of a receptive cell line for a prolonged period of time (up to 45 days) is also essential in order to find it in blood samples.

    Why is it that patients know these things and yet presumed eminent Professors, such as Pinching, haven’t got a clue!

    Perhaps the answer lies in the fact that he isn’t the one who is ill and in really desperate need of answers.

  13. If patients with ME can still be be described as vulnerable and desperate then NHS policy over the last thirty years has failed to successfully manage this illness and it is time to promote a new approach.

    The excitement generated by the WPI’s discoveries is itself an indication of simmering dissatisfaction with current psychological models of care. Until adequate funding is found to look at the biological basis of ME this intolerable situation will continue.

    In today’s world it is incredible and wrong that a research institute should have to be set up by a sufferer’s mother! This is what we have governments for and our government has failed its’ citizens with ME.

    Despite the current financial crisis, our society is one of the most affluent to have ever existed on the planet. It is a huge indictment of such a wealthy society that a group of citizens who become ill should still be described as vulnerable and desperate thirty years after the recognition of their illness. It reflects a society that accepts and encourages massive social inequality and feels no guilt about this injustice.

    With regard to the costs of ME – In the short term if a cure appears unlikely it may seem like economic sense to deny its reality – as money put into research will not result in getting sufferers back to work quickly. The costs in terms of lost productivity will be unaltered whether the research is done or not.
    However, ultimately if no effective research is done, sufferers will never be able to become productive members of society.

    I am sure further research into XMRV will continue in America. I hope it will get a fair hearing in this country. Whether or not XMRV is the cause of ME it is imperative that biomedical research is still funded until a cure or effective treatments are found. The government and medical profession must abandon its’ attachment to psychological explanations.

    I am not aware of anyone in this country risking their health by taking experimental or unproven treatments. Such treatments would be very difficult to obtain in Britain.
    Even if some patients are behaving irresponsibly it does not mean that the WPI should not be given the opportunity to complete its’ research and prove the effectiveness of its’ interventions.

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