1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Susceptibility of (XMRV) to retroviral restriction factors

Discussion in 'XMRV Research and Replication Studies' started by RedRuth, Jul 23, 2011.

  1. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Sorry, no epidemiological studies. Must be a first in modern medical history.
    No wonder we are so angry.

    There are some studies that I have heard of to look at the overall numbers of CFS patients in the population.
    These studies are often vitiated by the use of overinclusive definitions of the disease and so get no-where.
    I do not know of any study that looks at how the numbers with this disease have grown over time in the population.
    There have only been small studies of epidemic outbreaks made by the local doctors concerned at the time.

    There dont appear to be any looking longitudinally - to see how the disease progresses and what disease associations there are. I was initially very surprised when the WPI associated ME with leukemia and autism as there seem to be more autistic type disorders in families with ME. In Britain it had always been treated as a completely benign disease!

    There have been no biobanks established to preserve tissue samples for research. Those that are being established now are being done by patient charities.

    For a common disease that has been around since the fifties this is astounding, dont you think?

    These problems with research are longstanding complaints in the ME community but however often the poor quality of the research is pointed out, better scientific studies have never been done.
     
  2. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Wandering off-topic, but these points by Currer are very important context for scientists studying the behaviour of ME patients to be aware of...

    I would add that the above facts are the reason why whenever I hear hypotheses rebuffed using the phrase "there is no evidence that..." I roll my eyes, and my instinct is now to assume that the speaker is a charlatan. "There is no evidence" of X,Y,Z because of the bizarre and steadfast determination of the scientific establishment to prevent any genuine study of this disease. It is equally true that "There is no evidence" that X,Y,Z are not true, but the readers of text containing those words are unlikely to notice that crucial point. They are likely to assume - unless they are well-informed - that ME has been extensively studied scientifically and that no evidence has been found, and that the 'absence of evidence' is therefore somehow meaningful.

    In the absence of evidence, what are the interested parties supposed to do? Many in the scientific community bemoan those who advance hypotheses based on their own circumstantial knowledge about ME, and on unvalidated scientific research, rather than restricting themselves to mainstream, validated research. They also bemoan those who turn to 'alternative' (formerly 'complementary') therapies, or to unproven medical interventions. Many emphasise how all policy and all comment must be 'evidence-based'. But when there seems to be no interest from mainstream medical science in such a widespread and debilitating condition, and a continued stubborn refusal from the medical authorities to document, study and treat it, then it is surely inevitable that those suffering must turn elsewhere. If circumstantial evidence is all we are allowed, then we have no choice but to use that when reasoning, imperfect though that situation is.

    And so those scientists and sceptics who bemoan the 'unscientific' approach of patients would do better to put their own house in order, and to recognise that the responsibility for this situation lies with them, not us. It is quite hopeless to continue to complain about the behaviour of patients and imagine that it will ever change as a result of sceptics' complaints about us. The only solution which will change this situation is the funding of credible medical research into ME. That is the only thing that could begin to resolve the tensions around ME. Continued failure to do so now, and continuation of attacks on patients - such as Wessely's latest disingenuous assaults - would be an extremely dangerous strategy, because the awareness, desperation, anger and determination amongst the patient community is only growing stronger, and we do not have the luxury of the choice to go away or to give up.

    Finally, since we are talking here about evidence, I'll point out that the patient community takes into account a much broader base of 'evidence' than the scientific community when assessing these matters. They take into account the experience of themselves, their friends, and their physicians - an experience which is steadfastly undocumented - and they also take into account evidence such as that which Currer has set out here: evidence of absence of study, and the historical evidence of the way that ME has been treated. That evidence clearly shows that there is an ongoing determination on the part of the establishment, and especially on the part of the UK medical establishment, not to study ME properly, and this demonstrable fact demands explanation. It is evidence, at the very least, of a lack of care about the victims of ME. But deeper study of the history of this failure to study ME reveals that such study has been actively suppressed, and that the major shift in policy took place in the late 80s in the UK and US, when psychiatrists linked to the insurance industry convinced the government and the medical establishment to cease biomedical research, employ 'constructive labelling' to hide ME, and 'psychologise' the disease.

    All these facts form part of the evidence that ME patients are mindful of when they weigh up the pros and cons of scientific argument. The historical and political context provides us with an understanding of the 'big picture' that scientific specialists don't have access to. It is therefore quite right and appropriate that we begin from a starting point of mistrust, suspicion and scepticism of the scientific mainstream. We know that the modern scientific establishment simply cannot be trusted to study anything relating to our illness with honesty and integrity, and therefore we have no choice but to engage with the process ourselves, to apply pressure, and to be extremely cautious about which scientific voices we can trust. We have seen more than enough evidence over the years for us to know that we will never get anywhere if we just wait for the scientific world and the authorities to sort out the medical knowledge, and trust them to do the right thing. If scientists want patients to stop trying to do their job for them, then all the scientists need to do to achieve that is to start doing their job themselves. If that were to happen, then those scientists would have our whole-hearted support - just like the many excellent and dedicated 'CFS' researchers who work outside the mainstream and rely largely on funding from patient charities.
     
  3. asleep

    asleep Senior Member

    Messages:
    173
    Likes:
    212
    Another absolutely spot-on post, Mark!
     
  4. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1
    that may be true of the medical establishment, I wouldn't know, but why is this true of retrovirologists?
     
  5. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Fair question RedRuth. The anger and suspicion that's been directed at researchers like Myra McClure from some sections of the online patient community, for example, must come as a real shock, and some of the (alleged) behaviour is hard to explain or justify. But there are good reasons why this is happening.

    I would say that this phenomenon ought to be a real wake-up call to the scientific community, indicating the extent to which the historical problems around the management of ME research in the UK, by psychiatric researchers, are now causing many patients to begin to lose faith in the integrity of the scientific community as a whole. I think scientists need to understand one fundamental point: any anger of the patient community against medical researchers is wholly because they don't investigate ME, not because they do - and really that anger is directed almost exclusively at the psychiatric researchers. Medical researchers genuinely investigating ME would be welcomed with open arms - that's exactly what we are crying out for! - and such people do experience the other side of the story spun in the media: the extraordinary warmth of this community towards those they trust. But it is also true that medical researchers attempting to replicate positive biomedical findings from the US, using Wessely-supplied cohorts, and UK definitions of 'CFS/ME', and then failing to replicate those positive findings, thereby appearing to nip any progress in the bud under dubious circumstances, are likely to run into a fair degree of mistrust.

    Maybe the best answer to your question is to note that the controversy over XMRV really has its roots in the 1980s, when Elaine DeFreitas first discovered a retroviral connection with ME. The failure to replicate those results, and the apparent closing down of any research into retroviruses and ME ever since then, was already a controversial issue even before XMRV came along. Osler's Web documents that period, which was a pivotal period in the history of ME: the illness was psychologised, Gulf War Illness Emerged, the term "Chronic Fatigue Syndrome" was coined following the Incline Village outbreak, the definition of "CFS" was broadened in a way that obscured the much tighter historical definition of ME, DeFreitas found evidence of a retrovirus but the CDC and a couple of other teams failed to find it and the research was closed down, and Professor Simon Wessely emerged, all in the space of a few years. The circumstances around these events, and the recently partially-disclosed secret files about them, give further grounds for suspicion. And the nature of the management of ME since then, as a psychiatric/somatisation disorder, with the insurance industry entangled with the psychiatric researchers, is what has spawned so many conspiracy theories attempting to explain the way that ME/CFS research has been controlled.

    In the case of Myra McClure, for example, her paper dismissing XMRV was produced in collaboration with Professor Wessely (providing the patients) and she hails from the same institution (Imperial College), I believe. Wessely's patient cohort isn't trusted by the community as a genuine ME cohort, especially since he favours the dramatically looser Oxford definition rather than the Canadian Consensus Criteria, and McClure was seen as tainted by association. McClure's ill-advised and illogical comments, including the infamous claim to be "1000% certain" and the suggestion that XMRV may be in the US but not the UK, together with the speed at which that first negative paper seemed to emphatically deny the existence of XMRV, without replicating the WPI's methodology, all fueled that disrespect.

    I'm sure it's all very hard for regular scientists to understand where such a culture of suspicion and mistrust is coming from, but really, I would implore those people to consider that the origin of this mistrust is not with some characteristic of the patients themselves, but rather is a consequence of the way that ME has been managed historically. I think it's quite understandable that any claims sounding like conspiracy theories are going to just sound nuts to researchers who trust their peers' integrity. But equally, the patient community has no reason to trust any researchers associating with Wessely et al, and no evidence to cause us to assume that all the researchers involved can be trusted to investigate fairly.

    It also seems relevant to note that Dr Mikovits herself is a retrovirologist, and Drs Alter, Lo and Ruscetti are all respected (retro)virologists - there is clearly disagreement amongst the scientific community here, and much of the patient community has tended to side with those researchers they trust, and with those who are working with reliable patient cohorts supplied by those researchers, because these are the people we trust to accurately represent the ME community in their research. It seems likely to me that several innocent retrovirologists who have searched for but not detected XMRV must have been bemused to have become embroiled in controversy here. But the failure of the first few research groups to detect XMRV was widely predicted here, by those who feared a repeat of the DeFreitas controversy (and it didn't help when the one (Swedish) retrovirologist who we did trust died in a car accident). So the community in the UK, in particular, was already primed to doubt that there would be fair play here.

    Finally, I'd highlight one fundamental argument that should apply to any sceptic who demands "Evidence, or STFU". Any suggestion that smacks of conspiracy, or that questions the integrity of researchers, can be dismissed as absurd by scientists who know their colleagues and trust them all implicitly - but such people ought to note that there is in fact no evidence to prove that some researchers are not corrupted, and from a perspective further away from the scientific coalface, given the immense financial issues involved (one reasonable estimate has it that over a trillion dollars could ride on the outcome of the XMRV issue), it seems not unreasonable that this assumption - it is apparently an unquestionable assumption - of the integrity of the researchers involved, may be open to question. And even if the retrovirologists and other biomedical researchers themselves are honest and unbiased, there is still plenty of opportunity for the corruption of their research by influences such as supposed "CFS experts" such as Wessely providing cohorts and blood samples. It simply has to be accepted that the patient community does not trust Simon Wessely and that situation is very definitely not going to change.

    With all of this, I don't mean to excuse or justify any questioning of the honesty of researchers like Myra McClure, and certainly I'm not condoning any alleged threats of violence in this regard, but I'm trying to explain why the historical and political context makes this situation entirely understandable. Hope that helps. :)
     
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,705
    Likes:
    12,569
    Logan, Queensland, Australia
    Hi Mark, I think the biggest reason for "no evidence" is "no looking for it". Its published quite often, but they never looked. Bye, Alex
     
  7. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1
    This makes no sense at all given that other (more) highly respected retrovirologists like Levy have tested the same cohort and found nothing, are you sure you're not basing your opinion of the trustworthiness of these scientists on what you think their results should be? This is the impression I get. BTW, your point about the money is equally (if not more) pertinent to the WPI.
     
  8. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Please dont make these comments about the WPI, Redruth. What gives you the right to make them?
    You have to know someone with ME to realise what a desperate situation patients are in, and how long effective research has been consistently denied to this group.
    Please do not come on to a patient site and make such offensive remarks.

    I have met both JM and AW and I can see they are not motivated by profit but by the wish to help patients, unlike other massive interests in the biotechnology field.

    I think the pharmaceutical industry realised a long time ago that ME was likely to be some kind of vaccine injury and placed us in the proscribed category, along with autism and gulf war syndrome.
    After all about 10-15% develop ME after vaccination. This would be enough to set off alarm bells in industry.

    In England, Charles Shepherd has innocently been declaring for years the link between ME and hepatitis B vaccination withoiut any awareness of how this would be viewed by industry keen to protect itself politically and financially.
    It is no coincidence that we have found ourselves in the gulf war/ autism group of unresearched diseases for thirty years. Both of these are diseases with a vaccine connection.

    If the Grossberg virus was found in the 1990s, and a cell line created from it, there was ample opportunity for industry to understand there could be a link between MLVs and ME/CFS and block research out of a wish to protect itself.

    This is why we have never seen any research progress that relies on government or industry for funding.
     
  9. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1
    I'm sorry but vested interest works both ways and the WPI has as much of a vested interest as any other institution, why do you think this is an offensive statement, it's an obvious fact. It doesn't mean the WPI is dishones but I was responding to this comment:.............................................. but such people ought to note that there is in fact no evidence to prove that some researchers are not corrupted, and from a perspective further away from the scientific coalface, given the immense financial issues involved . Like I said, this works both ways.


    My personal opinion is that research is best done by academic institutions and not pharmaceutical companies or private institutions.
     
  10. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Most academic institutions in Britain are now dependent on industry for funding. There is very little independent research.
    The WPI is valued because of its' indepenence from outside interference.

    AW put her own money into the WPI. Please do not abuse so unthinkingly people who are acting from the best motives.
     
  11. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1
    Really? Do you have any evidence for this? I work in the Medical School of a British University and our funding comes almost entirely from the government (direct and from the MRC, BBSRC) plus some from charities (Wellcome etc). All the academics I know who have permanent positions pursue independent research, especially preliminary research. I've personally done several pilot studies. In my experience your comment is way off the mark.

    Like I said vested interest works both ways. However, I don't think the honesty of Drs. Mikiovits, Coffin, Levy, Lombardi or any of the other scientists should be called into question. I trust them all to publish honestly.
     
  12. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    The British Government, (via the MRC) has had a bad record in ME research and its independence in this field IS questionable. It has repeatedly funded only psychiatric studies on ME. It is an example of the very problem we are discussing.
     
  13. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    You work at a British University and are funded with money from the MRC and Wellcome trust?

    OH!

    :mask:
     
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    What Redruth wrote was entirely reasonable. The WPI cant be beyond criticism just because it is partly private funded, and the notion that the US tax avoidance and non profit systems should be allowed to put individuals and the institutions they support beyond examination is absurd. Yes the Whittemore family donated about 1.5% of the building costs for the structure in which the WPI is now housed, to the University of Nevada, however up until 2009 the majority of funds on which the WPI has operated has come from the US Government or from public contributions to fund raising.

    The WPI, like any other organisation is subject to internal and external pressures, and those include funding issues and perceptions of reliability on the part of potential customers/funders. If XMRV doesnt pan out in a way that attracts continued interest from funders, then not only will the XMRV aspect of WPIs operation not have further income, it will raise doubts about WPIs validity as a research institution. The idea that to even point this out is somehow attacking M.E/CFS affected people is crazy.

    Redruths observation that research is best done by academic institutions and not pharmaceutical companies or private institutions is particularly apposite institutions pursuing research agendas which are exclusively set by their controlling agency (Board, owner etc) will always be subject to concern over confirmation bias, whether or not profit is the sole motivating factor in the institutions operation. The issue is not who the funders are but whether there is independence, both in the setting of broad research agendas and in the conduct of research itself; the WPI structure does not appear to incoprate the kind of external reference that would ensure the highest levels of research independence. Im not suggesting that there is anything untoward with WPI, merely that as a private institution, the burden of demonstrating research independence is necessarily high.

    IVI
     
  15. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    State-funded research can also be questioned and criticised as having vested interests. For example, in the case of ME, the state has managed the illness as if it were a psychological/psychiatric condition for about the last 25 years, and the MRC allocates around 90% of its paltry research budget for ME to psychiatrists. The costs to the state of recognising ME as a viral condition may well be considerable. And a large proportion of the representatives on the state's MRC committee assessing funding for ME are in the pay of the insurance companies, who stand to lose vast sums of money if ME is properly recognised as a physical rather than a psychological condition. So, sadly, it is the case that the MRC, in relation to ME at least, represents the interests of private industry. The modern state is now so closely tied up with private industrial interests - vaccine manufacturers and nuclear power manufacturers underwritten by the government; public-private partnerships all round; high-placed state officials in the pay of private interests - that it is now naive to cling to the old assumptions of the integrity and indepence of the state bodies. If I describe this situation as neo-fascist, doubtless I'll be accused of hysteria, but nevertheless it is true that fascism is defined by the merging of state and private industry and this is increasingly the situation we are in today.

    So in that sense, actually, I - and I think most people here - would agree wholeheartedly with the theory that research is best done by independent academic institutions. The difference of opinion, perhaps, is that many of us do not trust that those academic institutions really do live up to that ideal of independence. Regrettably, academic independence has become steadily corrupted by private financial interests over the last couple of decades, and it is a little disturbing if Redruth and IVI are unaware of that situation. I have several friends who have left their academic careers in disgust over the loss of academic freedom and the dependence on private funding. I have one friend whose privately-funded (and thus privately-owned) cancer research was not able to be published "because it found the wrong answer"; the other research that achieved the (negative) results desired by the multinational concerned were published though. I suspect that, tragically, this may be a situation of bias which is only evident from outside the system.

    And the state - and "UK PLC" - has financial interests too, and it decides on the basis of those interests who and what it will fund. If you are one of those who it chooses to fund, you can easily be unaware of the interests at play around you; perhaps such influences are more evident to those whom the state chooses not to fund.

    Although the WPI are a private company, they are a very different animal to the pharmaceutical giants whose research dominates and skews the scientific state-of-the-art. To place the WPI in the same bracket as these giant private financial interests is a massive misunderstanding of the reality. Bear in mind that the WPI are founded and funded by the parents of a child who suffers from severe ME, and that this defines their motivation: to find a cure for their daughter's illness. Bear in mind also that those patients who trust the WPI and who trust Dr Mikovits do so partly based on personal contact, both directly and through the grapevine. I have watched enough video of Dr Mikovits in action, and spoken to enough people who have met her, to make up my own mind.

    And I really don't understand this argument about research independence...the idea that the WPI are somehow not independent seems odd; I take this to mean that their research is not independent of their financial interests, but I don't see that this is any more true for them than it is for anyone else - the argument about the commercial tests does not really stand up IMO because of the non-profit setup here, with money going back into research; every researcher has personal and institutional financial and personal interest in their results being proved right...so I do think the argument there applies all round, despite the assumption of many in the UK that the WPI is a special case...one could equally argue that everyone else has a big interest in 'proving' the WPI wrong for precisely the same reasons...

    Yes, the WPI can and should expect scrutiny just like everybody else. But the insinuations made about them, right from the moment they first published in Science - from the UK in particular, from (eg) sceptics such as Bad Science members, and from people with an instinctive and prejudicial mistrust of private US companies and an equally instinctive and prejudicial trust in the UK public institutions which is emphatically not shared by most sufferers of ME due to their personal experiences - these insinuations do not tend to go down well here, especially when they don't appear to be balanced by an equal scepticism of the interests of researchers like Wessely et al.

    Actually, RedRuth was quite positive and quite balanced above, in accepting Dr Mikovits' honesty, and I would personally tend to accept this principle, in general:

    However, while I tend to trust (but not blindly or completely) the honesty of all these scientists, it is another matter to trust that they are not skewed in their perspective by their interests. All scientists should be aware of this principle, but very few apply it to themselves - if we are all honest, we are all unable to fully assess our own context and prejudice, by definition.

    So perhaps we should all recognise, when we criticise others for having biases and interests and assumptions due to their context, that everyone has the same problem, including ourselves. We should all strive constantly to recognise and eliminate those biases, and pursue only the truth, but it's very difficult to do.

    In this case, the WPI's main bias is an interest in the patients based on the Whittemore familiy's circumstances. The interests of most other researchers studying XMRV may be different. If the theory here is that lab-created retroviruses have been contributing to or causing ME and other diseases for decades, and that lab 'contamination' by these viruses may not be as harmless as has been assumed, I suspect that theory is so profoundly disturbing to scientists working in this field that the independence of the WPI may well turn out to be a very good thing for everyone.
     
  16. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Hi Mark,

    Why do I get the feeling that linking a new retrovirus to any disease has been the wrong answer for any researcher for a generation.
    It seems to me that all the interest in retroviruses petered out in the nineties. Given that it ought to be much easier to discover new viruses with our much more advanced and sophisticated genetic technologies, why have there not been more discoveries in this area?

    There seem to have been several attempts to link retroviruses to illness, all of which have failed because of lack of reproducability - quick PCR tests which could not find the alleged virus, and then - what? - funding withdrawn?

    I dont think this is just ME - I think it has been other illnesses too, - can anyone find any examples?

    And to respond to your points - I think we should make a distinction between INTELLECTUAL independence and FINANCIAL independence.
    All institutes are going to be financially dependent on someone for funding. It is when their INTELLECTUAL independence and publishing independence is corrupted that the science that they produce is merely a manifesto for their backers.
     
  17. alex3619

    alex3619 Senior Member

    Messages:
    7,705
    Likes:
    12,569
    Logan, Queensland, Australia
    Hi, there is another issue here on research agendas that I have made elsewhere. I trust Big Pharma to aggressively pursue drug development and clinical trials, government and private agencies are typically bad at this - not that I would trust the marketing claims of Big Pharma, but the profit motive does drive them to make large investments.

    On the other hand, while Big Pharma is good at getting targeted applied technological advances, they have no profit motive in big projects for basic research. I think they do some, but in my opinion (don't know if its fact) basic research into underlying biological mechanisms is almost always done best in a climate of intellectual freedom. Basic research such as the identification of causal mechanisms is thus more likely to be funded by government, and in rare cases by patients.

    I suspect that most of the advances in the next few years will be either government or charity driven. Once the underlying mechanisms are elucidated, expect at first joint ventures with Big Pharma, then major Big Pharma projects.

    Bye
    Alex
     
  18. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1

    I'm not funded by The Wellcome Trust or the MRC as it happens I'm funded by the BBSRC. Why?
     
  19. free at last

    free at last Senior Member

    Messages:
    632
    Likes:
    128
    Because the MRC are not particulaly helpfull to patients in any meaningful way. and the welcome trust has connections with a certain Mr towers, who you just showed some research on trying to prove Alter and low incorrect. as well as the WPI, which if they are correct is just dandy, but if they are not, then the damage done is immense. Do you look for negative information ? it appears so to me. But i agree others may look for positive information, such is the argument im right your wrong mentality. Its like being back in the playground if you ask me.

    Right now i would like to say the xmrv connections to ME/CFS do look pretty shakey. I think the BWG will likely tell us all what we need to know. me personally i hope Judy comes out of it really well. i suspect she will not. but im hoping she will if its the truth. Lets finally just have the truth please whatever that turns out to be. If it goes against the ME community, i feel sad that once again, many will be laughing at sick patients all over the world. In my book they are the sick ones. but not in the sense that we are.
     
  20. RedRuth

    RedRuth Senior Member

    Messages:
    143
    Likes:
    1
    I just check the literature every now and then, I can't help it if it's all negative re a link between ME and XMRV.

    I don't really understand that comment? Who's going to hold the ME community responsible if the WPI findings are wrong? I would imagine most people will feel bad that you've had a possible cause (and even cure) offerd then taken away. At the very least it's sparked some interest from some very big names in virology.
     

See more popular forum discussions.

Share This Page