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Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by spinhirne, Jan 9, 2011.

  1. eric_s

    eric_s Senior Member

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    I will once again try to explain what i meant...
    I did not say who is "allowed" to do science and who is not. This is not my way of thinking. What i said is that you need knowledge, an amateur might have this too. My argument is that the best way of critique is to produce evidence that proves the other side wrong. Who is most likely to produce that evidence? The best qualified scientists.
    Yes, psychologists are scientists and they may be proven wrong by science. It's not like all the scientists have the same point of view and also often the view of an individual changes over time.

    I am not ignorant of the life of people with ME/CFS (i live it myself) and what i said is not unrealistic. I think we should never have such a defeatist attitude. We have it in our own hands and once again, i believe it's actually not hard to do. Is it unrealistic to save 8 or 9 US Dollars per month in the UK? I am convinced it's not.

    Making a literary reference is not uncivil at all, that's not what i was referring to.

    I did not "resort" to calling some people paranoid and their behaviour aggressive. It was exactly what i wanted to criticize because in my opinion this is how they behaved and i don't think this is good or helpful. I am very well able to follow something. I read the thread in question, about 20 pages of it. But my time and energy is limited and i do have other things to do.

    You expect people to provide you with a summary and analysis. Why don't you go over there and read it yourself?
    Do you have ME/CFS? I think in another one of your posts i read you don't, but i'm not sure anymore. If you don't have it, you should not want me to do time and energy consuming work for you, please.
  2. Angela Kennedy

    Angela Kennedy *****

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  3. Snow Leopard

    Snow Leopard Senior Member

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  4. biophile

    biophile Places I'd rather be.

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    Science writers got played and exposed their bias and ignorance

    It looks like many science writers derisively swallowed the "XMRV is probably contamination" party line without really understanding what was going on. This whole incident exemplifies how casting doubt is not the same as critical analysis. And it certainly wasn't balanced, it reeks of opportunism at the sight of easy pickings. They got played by the original press release, which clearly went beyond the evidence. They also got embarrassingly owned by the astute comments of mere lay patients.

    Where was all the feverish circle-jerking amongst skeptical science writers when the CDC recently (2010) published a study on personality and another (2010) on psychiatric comorbidity, both which used a flawed criteria known (as shown by Jason et al) for selecting CFS cohorts "contaminated" with primary major depressive disorder (eg 38% in one study)? In an earlier systematic review of personality and CFS (van Galeen 2007), depression symptoms in a minority of patients is mentioned as a possible source for elevated personality features in CFS cohorts. Where were the headlines "CDC studies linking CFS to personality features and psychiatric disorders may be fatally flawed"? Instead we got headlines like "Is CFS a personality disorder?" even though the clear majority of patients didn't even have any such disorder.

    On another thread we have been discussing how easy it is for psychometric scales and the presence of physical symptoms to create false positives for psychiatric diagnoses in CFS. All this has been known for decades, Jason and others have also written extensively about it. Where were the headlines "Studies linking CFS to psychiatric disorders may be fatally flawed"? The "CFS is somatised depression" argument got debunked a long time ago, yet don't be surprised if you still come across this or equivalent in 2011, even from "Science Based Medicine" writers who believe the prevailing view of CFS is "an emotionally-based, mood disorder (somatization)."

    Some people have a massive blind spot whenever it comes to this sort of thing. Biological research gets treated with unrelenting (pseudo)skepticism but the psychological speculations float through without much thought at all. Patients are often accused of having the opposite bias, but we aren't the ones writing supposedly unbiased professional articles for the news.
  5. Wayne

    Wayne Senior Member

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    Hi Alfred (ahem, I mean biophile) :Retro smile:

    Thanks for your great post. I just checked the comments on the Forbes article and it sure seems Mr. Salzburg is "getting his clock cleaned". Many comments there are top-notch, and his replies do not come across as even remotely credible. In fact, they come across to me as being "emotionally immature". Anyway, last count is over 4,000 views, ZERO recommendations. I hope Forbes takes notice.

    Wayne
  6. eric_s

    eric_s Senior Member

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  7. SOC

    SOC Moderator and Senior Member

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    Thank you, eric_s, for maintaining civility in the face of provocation.

    A valuable piece of wisdom from US Pres. Barak Obama this evening:

    "At a time when our discourse has become so sharply polarized — at a time when we are far too eager to lay the blame for all that ails the world at the feet of those who think differently than we do — it's important for us to pause for a moment and make sure that we are talking with each other in a way that heals, not a way that wounds,"

    I encourage the membership of these boards to continue to ensure we are "talking with each other in a way that heals, not a way that wounds".
  8. Mark

    Mark Acting CEO

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    This terrible piece just showed how the original press release (the contamination papers) can be amplified weeks later by ignorant and prejudiced bloggers and hacks, and turned into something even worse, adding the most basic and misleading errors of fact, and spreading the original disinformation more widely.

    The error that the Hue phylogenetic 'common ancestor' was a mouse and not a human cell line was particularly awful - a key detail.

    Responding to papers like this, IMO, should be firstly based on scanning through for these key errors of fact. In the case of this piece, every line can be picked apart, which is time-consuming, but the efficient way perhaps is to hone in on the most critical, misleading error of fact and point that out with reference.

    We do have a decent response network to this sort of thing, I think, distributed over the web, but it's always capable of getting better...and there is lots of it to deal with...



    I read the whole thread, I tell you. The whole thread. I found myself howling uncontrollably at regular intervals.

    I respect you for portraying it in such a generous manner...it's been a bit worse too... :)

    Quite.

    You have to say there were some important and legitimate issues brought up...but the discussion went nowhere because the offensive and aggressive tone drowned out the researchers' brave and commendable attempt at dialogue.

    It seemed so sad: it seems as if our greatest energy and passion and anger is reserved for those who are most actively and positively trying to help us, for some weird reason.

    I'd like to see Dusty posting here too, to get a less heated conversation with the ME/CFS community, it's great that he's approached this situation the way he has - I'm loving some of the openness I'm seeing recently and it should be encouraged, not stamped on: we should be grabbing those opportunities with both hands and building bridges; constructive networking with supporters like Dr Miller is crucial IMO.

    It seemed that the full study design hasn't been agreed yet, that's what they were arguing about, and they want to clarify that there aren't any errors or loopholes in that study because it could be a death-knelll for XMRV research if that fails...I think that's a bit overstated, I'm not sure what the worry is over Ila Singh, or Maureen Hanson, or Lo and Alter, or the Bagni group, or any of the other people who are continuing to progress...or indeed the Lipkin and BWG work which hasn't all fallen apart quite yet...but I don't think Dr Miller's is the make or break study, anyway. Still, it's certainly important that the design is right, and it'd be a shame if an opportunity has been missed to review or discuss that design constructively.
  9. Angela Kennedy

    Angela Kennedy *****

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  10. Snow Leopard

    Snow Leopard Senior Member

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    Anyone notice how Salzberg refers to it as the 'Mikovits' study? Most scientists would refer to it as the Lombardi study, since he was the first author.
    Who else seems to be obsessed with Mikovits? None other than Abigail from the ERV blog. Maybe that is why Salzberg's argument looks like a poor quality facsimile of prior arguments (presumably that's how all the obvious factual errors crept in).
  11. Angela Kennedy

    Angela Kennedy *****

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    Mark, I have to say, now I'm up to speed on what happened there, I disagree with the idea that the "offensive and aggressive tone drowned out the researchers' brave and commendable attempt at dialogue."

    The concerns about Miller's intended research are legitimate. The problems of anonymous writers claiming to be funding (who the h-e -double hockey-sticks is 'Ecoclimber'?), or of being Miller himself, or of being Andy, his assistant, coming in with various ad hominems and appeals to authority against the people on the forum, the issues of apparent canvassing for research subjects, and all occuring in the context of a general, perfectly understandable, mistrust generated by the poor science and sinister politics SINCE Lombardi et al in opposition to that paper, are most likely to have caused the problems.

    IF that was Miller and his assistant, IF 'Ecoclimber' was a funder, then their behaviour was atrocious. Constructing people as fools, true believers in things like cold fusion, having a go at them for their spelling and grammar I believe at one point? among all the other ad hominems, will have inflamed things. Even saying that, many people kept their cool commendably.
  12. biophile

    biophile Places I'd rather be.

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    Thanks Wayne. I wonder if it would have been much different even if there was no bias against ME/CFS, because it is easy to get things wrong when a journalist or science writer spends the minimal time and effort to produce their own article on a complex and emerging field. On the other hand, many articles didn't bother to seek adequate opinion or analysis from other sources to provide balance. As ME/CFS becomes more mainstream, I can see more of this sort of faulty journalism (and embarrassing corrections from the patient community) taking place for the exact same reasons. I think there is still a possibility that HGRV will be a dead end, but to me at this stage it is ironically looking more promising after this "contamination" debacle.

    The contamination papers and press release are really looking like a house of cards at this point. It made chumps out of people who probably take pride in their critical thinking skills. I think as a community we are remarkably informed out of necessity and this gives us an edge.
  13. Angela Kennedy

    Angela Kennedy *****

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    I think you are right biophile.
  14. Tuha

    Tuha Senior Member

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  15. ukxmrv

    ukxmrv Senior Member

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    I'm really glad that we are talking about this topic. There are many PWME and CFS who could give to research but are simply not doing it. I don't know how to reach these people.

    Although most people I know are living in poverty and in conditions that make me cry, there are wealth patients in comparison who pay many thousands for treatment but give nothing to research in the UK or anywhere.

    People who are educated and informed about the disease know how bad the situation is. They can use computers, belong to support groups or internet forums and follow developments.

    However, there is a large group of patients and their families who can't use a computer due to physical/cognitive problems or who cannot find the right places on the internet for real/relative information. There are many thousands of patients who would not even think to look on the internet for research and have no idea who the researchers are and what they do.

    Recently I saw a post to another forum for someone with ME who was asking around about a particular practitioner. This was most likely a charlatan but had been recommended to them. They had a family member willing to pay. There are thousands of patients like this with family money or their own money paying for experimental treatments each week and often doomed for failure. They don't ever mention funding research. Hardly anyone posts to groups asking which is the best charity or research group to donate to.

    Hardly any family members raise money for good research. It has also been argued that we have few good researchers to donate to in the UK. I do see however far more sponsored events or requests for donations to AFME, which is a charity I do not support.

    In some families the burden of caring for the ME patient is just more then a family can cope with. In others they could do more but are simply not motivated to do so.
  16. ukxmrv

    ukxmrv Senior Member

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  17. Angela Kennedy

    Angela Kennedy *****

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    I was focusing on the poverty issue here. At least some people have recognised ME/CFSers may be in terrible poverty now!

    But, as I've mentioned before, there are other problems with the 'raising money for biomedical research' exhortation.

    The first problem is the "patients HAVE to donate and if they do not they are wrong" meme which turns up in these debates. They are already creeping up here- this compulsion to 'donate' or 'raise money', and in Eric's apparent argument, to do this RATHER than actively gear up on the scientific knowledge ourselves and publicly critique the bad science, which many of us are more knowledgeable than journalists and, heaven help us, at least some of the 'scientists' themselves! And these are particular problems because:

    The second is the "How dare patients use what little money they've got on things that might make things better for them, but are not considered 'evidence based'" sentiment which is the implication when people start complaining about other people's treatment choices, indicating that money should go to 'biomedical research'. This is cruel. People's health and lives are improving on certain treatments. To expect them to sacrifice this on the altar of 'evidence based medicine', which is what is being implied, is wrong. People's choices are people's choices. I disagree with some of them (LP) for example, but I still cannot presume to exhort other people to spend money on something that may never benefit them (which is always possible-sometimes likely in science, slow-moving as it is at best).

    Thirdly, biomedical research costs a LOT of money. It is unfair and unreasonable to blame people for not being in a position to either save or 'raise' money, either because of financial poverty or 'energy' poverty - a massive problem for many in the community, especially considering how expensive research actually is, and imply they are responsible for poor progress in research, something I have seen.

    Fourthly, scientific research does not take place in a political vacuum. I actually disapprove of some of the research being deemed 'biomedical': I think it's 'bad science' that causes more problems for the community. That my money might go to 'bad science' (or my daughter's if either of us had any at the end, or middle, of the month!) is abhorrent. I think some of the organisations asking for funding have been guilty of 'friendly fire' on the community also, and therefore I do not want my hypothetical money to go somewhere that I think may be harming the community's cause.

    Fifth, Funding by patients can lead opponents to attack biomedical research as being biased by its funders. This happens all over 'science'. Members of the ME/CFS community attack research because it's funded by Linbury or big pharma. While I think we have to weather that and show why research is good (when it is), it does illustrate how raising money for biomedical research would not be the panacea for the community it is sometimes portrayed as.

    This is NOT saying to people "DON'T donate or raise money for research"! It is just demonstrating why EXHORTATION is not working for people, and why few people are either in a position, or choosing, to do so. I suspect people are sick of being told to stop taking carnitine, or melatonin, or Q10, or whatever is helping them through difficult lives and disastrous health, while others are sick of being told to reduce heating their house, or their food in order to put that money into 'research' (because for some, this is what is being implied to them), especially when there are other problems such as those I've mentioned above.

    Personally, having some experience of seeing some excellent advocacy in action for very disadvantaged ME/CFS sufferers, I would put any money I did have into any practical advocacy funds that were available to help other particularly disadvantaged sufferers . I might also give to particular biomedical research projects I thought were useful (just like Linbury or big pharma do all the time). That's on the understanding that I don't actually have money to give at this time. These may be ways to go in the future for those hoping to raise money and there may be others, but attacking people's choices and demanding they pay-up, which is what some exhortations have become, is actually counter-productive.
  18. Tuha

    Tuha Senior Member

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    angela, i think this is a topic where is just difficult to find one best solution. I am the last one who would lead a campaign like "patients HAVE to donate and if they do not they are wrong". i read your arguments and i can understand your attitude. What i say in my opinion - I think that patients should donate if they can but if they will not it doesnt mean that they are wrong. just we can have discussion about, everyone says his arguments without an accusation and on the end everyone can decide what he will do.

    i have no scientific background but i think i understand that the science is expensive, there is a lot of bad science, politic issue,...but some of these problems you can avoid. i was for example thinking to contact ESME where is a scientic panel of cfs researchers. they could maybe propose some studies which we could try to fund and then the patients can decide alone which study they would like to support. of course, they can also do bad science but this risk is always in science. for me this risk is acceptable for someone else maybe not and i can understand without accusation. and then the people who like this risk can join this campaign.

    So I think that we could try it - i dont say that my opinion is right and everything what I would propose is a discussion about / there will be a lot of people who will say that they dont like it but then there will be a lot of people who just dont think about and maybe with a discussion we can get them for our project. if it will happend i will be happy - the other side maybe not but how i said this topic has not only one right solution.

    if i look around all other sicknesses try to find money for the research - and they try to use all sourcess possible - what is pity that we have one big problem - our sickness is not taken seriously so we will not get soon federal funding, no money from healthy people - so the only way are patients donation.

    how i see the things, without research money we will not improve our situation. i think we could try to do something for it and that's why this talk is here.
    when someone prefere to support an advocacy for disadvantage suffers - it' s also great - how you say our sourcess are limited and we cannot support everything.

    the reserch is expensive and sometimes it takes for a long time to get some positive results. but maybe we can be lucky and 3-4 studies can change everything - who would expect one year ago that they will find a possible cause of me/cfs and now we have here xmrv and we are waiting if they will confirm it. maybe the luck will turn to us but in my opinion we have to help it.
  19. Angela Kennedy

    Angela Kennedy *****

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    Aaagh! Listen out for the demonstration of this problem : ( Again, not saying therefore no patient should fund research, just showing the problems raised...

    http://www.youtube.com/watch?v=pXNmrVP7Gi4&feature=player_embedded
  20. Angela Kennedy

    Angela Kennedy *****

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    Fair points. BUT one thing - people have been campaigning for years to get biomedical research funded by governments. THAT should not be abandoned - so patients raising money is neither 'the way' to make everything better, nor the 'only' way to be advocating.

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