Discussion in 'XMRV Research and Replication Studies' started by Countrygirl, May 31, 2011.
Well that clears up everything...
Yes, quite, Currer.
Critically engaging with the science and those claiming scientific authority is not 'abuse' now, is it? It's an over-used word often used wrongly. Like 'harassment': "I don't like you disagreeing with me, so therefore you are harassing me" is a common meme lately. You see it a lot from certain people on Wikipedia and 'skeptic' sites.
hi, RedRuth, nice to meet you.
If by "medic" you mean clinician, you need to know that there are absolutely researchers who abuse ME/CFS patients. Please look at: http://www.cfscentral.com/2010/06/hard-cell.html . These are dramatic examples, and we don't doubt that there are more who may either not have anyone to speak for them, or who choose not to go public. The same prejudice on a moderately- to non- dramatic scale affects most of us.
See the earlier history (non-retrovirus-related towards the end) here
Please note that Wessely is a researcher and one of the consultants to the US and UK governments on CFS, both of whom allow the opinion-based psychogenic perspective to dominate input to their health authorities.
As has been said, we are very pro-science here. But we are anti- cabal control of message.
After the Singh study, I was doubting XMRV. (Even so, the reasonable conclusion is confusion--it is premature to stop studying the issues surrounding MLV's in ME/CFS and other human disease.) However, the Science request for retraction feels very much like cabal control of message. Even if it were strictly true that the Lombardi paper cannot be replicated (which is not actually so; Lo et al. classified their attempt as a "clear" confirmation of the central tenant, not of XMRV specifically, but of related retroviruses... the Japanese found them in their blood supply... etc.), but even if that were so, this would still not at all be grounds for a retraction!
Hi, scientific studies should be questioned intensely. This is not just a matter for scientists, medical practitioners and bureaucrats: ME/CFS patients, parents of autistic children etcetera are stakeholders too. It is unfortunate that sometimes scientists take this personally, and sometimes very sick people overstep and make personal attacks. Science is traditionally not used to involvement from other stakeholders - but that has changed forever.
Some arguments used on PR are essentially conspiracy theories. There has been at least one major conspiratorial event proven in the USA, investigated by Congress, for which many people lost their job at the CDC. The CDC deliberately misappropriated funding for CFS to other worthy research, as documented in Osler's Web. "Conspiracy" to pervert the course of science has already been proven, it makes many of us more alert to the possibility of it happening again.
Much of the "science" behind the biopsychosocial research into CFS deliberately ignores the contrary data. They ignore anything they don't like, don't reference it in their papers, don't explain it, don't design their experiments to properly test their hypotheses. This is dubious science at best, and I think there are sufficient grounds for at least an initial investigation to determine if there are grounds for claiming some of this is scientific fraud. I recommend that anyone interested in this read Hooper's "Magical Medicine".
My own comment on PACE might be blogged soon: The LEAD Standard, although I am also considering calling it "Modern Alchemy: How to turn GOLD into LEAD".
RedRuth, I don't know if you're still reading and I haven't read all the comments on this thread but you should go over to the research forum on this site and read the comments on past papers. There are lay folks on this site who have signficant knowledge about the research and also a fair number of both clinicians and scientists on this site who have ME/CFS. I can tell you that in my experience, papers are usually not retracted for merely being wrong or a significant amount of the science from past decades would have been retracted. The ones I have seen that have been retracted are done so because of suspected or proven fraud, not because subsequent ideas showed that the original ideas were wrong.
RedRuth, If you are still lurking,
I understand the science pretty well, and I can slog through it okay. Mikovitz supports her theses, very well. She takes the naysayers all on, she knows her science. Drs Lombardi, Montoya, Lo, Alter, Silverman and many others make sure they do impeccable science. And I am fortunate to have some grip on medicine. And yes, the Japanese are all over the retrovirus questions.
The incredible nastiness around Dr. Lombardi and Mikovitz' et al, is truly amazing. Demanding a retraction-no reason there I can see. I can at will pull some Science articles that are worthy of such consideration.
These out of the blue comments-"..shouldn't take antiretrovirals..." or maybe should/shouldn't take antivirals. So far, the medicines seem to be helping a lot of people. Beats dying sooner than later from M.E./C.F.I.D.S.
There is a lot of science to read out there. Same with some anti-retrovirals. Why would you show up here first off if you are science oriented? You know where to go look and read up.
We have learned a lot from what, 30+ years of work from Silverman's lab and Mikovitz'? And Dr. Montoya has tons of good work.
I am personally acquainted with people who are taking anti-virals and anti-retrovirals. I find their progress has been remarkable.
I won't get into it, but RedRuth seems to be trolling-first splash on the forum is , ahhh...pretty confrontational, IMHO. Not much science coming out of RR's posts, just more baiting. I do not see a "scientist" behind those posts. I am not hearing scientific statements or justifications. Why come here when PubMed and Plos are loaded with research and jump in with baiting and insults?
Some of the HIV people are all flamed out because they have developed a nice corner of the grant monies market-they don't want to hear about another retrovirus.
I don't agree with Cort's views that Singh has knocked XMRV out of the ME/CFIDS park-She seized opportunity pretty fast, and builds on portions of Silverman's and Mikovits, Lo and Alter, et al. Dr. Singh's statements that CFS patients shouldn't take anti-retrovirals doesn't have any scientific or medical basis to back it up. She wants the cancer corner. Big grant blocks there. At any rate, she left those of us with ME/CFIDS, what have you, out to dry-again, IMHO.
I am so disappointed Dr. Peterson is out to take down WPI. He was the one posing the questions and someone came to help with the answers.
BTW, Anyone see how much the National Science Foundation squirreled away and hasn't used? Over a billion dollars. I get stuff from the CDC in the mail all the time-more questions about things like taking telephone surveys and getting flu shots-strange to me. Strange, because they spend more postage and paper sending out a questionnaire about why I didn't respond.
I add my rhetorical plea-what about ME/CFIDS? Even the CDC has upped its numbers of how many people have it.
Alright, my ball is in the RNAse L work-which-however it is disrupted-maybe early XMRV infection, low viral reproduction, but incorporated into the genome, and HHV-6 and EBV all raise heck with the body. All these can lead to the imbalances with interferons and from there lead to cancers of all sorts.
I am alive thanks to the antivirals, the serious ones. They have helped me dump many viruses that are not supposed to be there. I don't get bad pneumonias anymore. I run real fevers now, and infections clear.
I will continue to give my $25.00 to $50.00 a month to WPI because they are bearing down on the hard science issues. It is illuminating, I see progress. And medically, it seems to pan out so far. Looks like we have a shot at eliminating a great deal of prostate cancer, for starters, thanks to their work and Silverman's work. The answer is going to be in the biochemistry, molecular biology, retro-virology and interleukins.
I will take my attitude and mere opinion, and-oh, my goat! - especially my goat which was gotten-get to bed, and leave the RRs of the world to add so much helpful commentary for a bit.
Thank you Willow, Alex, and so many others for patient postings.
You know I'm staggered by how rude and aggressive some of you are. I'm not a troll and I'm not baiting anyone. Because I work in another field (molecular cell biology) I'm wary of commenting on a field I'm not expert in (retrovirology). I came here to get an understanding from this perspective after reading some science blogs and information on other forums. It hasn't been a very edifying experience.
If a 'scientist' such as RedRuth can not consider the possibility that some other 'scientists' have acted in bad faith then she is being biased and thus unscientific and, in this case, anti-science herself. It is the patients who are, almost universally pro-science and anti-"fake science." Scientists such as RedRuth who support the fake science and fake scientists are anti-science.
I thought the same thing
Maybe i'm one of the "loud voices", i don't know. Not entirely stupid neither, i hope. I hope this does not disturb people, probably there are all sorts of people and not everybody likes the same thing. I can only talk for myself, but i am doing what i'm doing, because what i very strongly believe is that we need a much louder voice and much stronger actions. This is what we have been lacking for so long. And i think it's to a good degree what makes the difference between success and failure. Of course you also need to be right, but then you need to be strong enough to push things through. Just look at the recent developments. All the arm wrestling going on. This is not only about being nice and being right. It's about being stronger than the other side as well. If we want to be ok, we should think about that and make sure we will get strong enough to win this, one way or the other. We need to be sure there will be enough doctors that know how to diagnose and treat ME/CFS, enough researchers doing good research, enough awareness and support amongst politicians, officials and the public and the necessary funds available to achieve everything said before in this sentence. I don't think we can get these things without a loud voice.
IF you read what I actually siad
There are other high quality virologists who have found it. IrsiCaixa is one example. The zero/zero could also raise a red flag regarding the quality of those negative studies. How can they not find anything at all, if HGRVs are in the population, as other work, even from the CDC, concludes?
Maybe the WPI are currently working on jumping through all of these extra hoops to get published, and maybe that's why we've not seen much published from the WPI recently.
It's not Mikovits' skill as a scientist that is under question at all...
The idea behind science is to explore the possibilities, and to find the truth.
Judy and the other authors of the original paper have no reason to retract the paper, and nor do the editors of the Science journal.
If it does turn out to be contamination, then that doesn't make Judy a bad scientist... She is at the cutting edge of science, and even a finding of contamination will have advanced our understanding of the subject, and the science involved. No other scientist has yet been able to sufficiently explain how Mikovits' findings are contamination.
And remember that Mikovits was not a lone author of the original paper. There are a number of capable scientists still on board.
This is all a lot of hot air at the moment, and the science has to run its course, which will happen slowly.
The WPI say that they can't get anything with Judy's name published. I don't know the details, but they seem to be suggesting that politics is at play. The name of 'Mikovits' seems to be too hot for the journals to handle.
It's not just Mikovits who has found XMRV. There have been a number of independent studies now who have found XMRV in prostate cancer. Even Switzer of the CDC has found XMRV in some prostate cancer patients now, and says in his latest research paper that XMRV is a wild human virus. There's a whole load of scientists working on this over the world. Judy just happens to be the one in the spotlight, maybe because she isn't shy about being there.
That doesn't mean anything if the methodology used is incapable of detecting wild XMRV or low copy numbers of XMRV in the blood.
I think they've already done that haven't they? That's why they got published in Science, and that's why it's not being forcibly retracted.
Yes, there is more work to do, and it's being done now.
As much as we want to, we can't make this process happen any quicker than it is.
I wasn't sure where to post this, this seems as likely a place as any. This goes to the question of whether or not Lo and Alter's finding of PMLVs supports XMRV, and how that relates to a recombination origin of XMRV and its association with ME/CFS. If it is sufficiently similar to be support for Lombardi et. al., as Lo and Alter assert, then the contamination claim of an XMRV recombination event in the early 90s is irrelevant because the virus clearly predates that.
If on the other hand, PMLV is taken as very different, then the contamination claim is irrelevant because they also have to prove PMLVs are not associated or causal for ME/CFS, which they have not attempted to do.
Either way a claim that XMRV originated as a recombination event in the creation of a prostate cancer cell line in the early 90s is irrelevant in the big picture - it is just a technicality at best, misleading at worst.
I go for the second alternative
Annette Whittemore's letter to Science contains a 5-page
attachment comparing the methods used in the Lombardi et al
study to the Lo Alter, Switzer, Singh, and McClure studies...
Ed: to correct studies in comparison chart and add link.
Hi Red Ruth
Welcome to the forum.
I agree with your comments that reproducibility is everything. If you cant reproduce the outcomes, there's not much point.
Yet, if you dont undertake a true replication study, your chances of reproducibility diminish.
To date, there has not been one single true replication study done.
Scientists have been busy ''developing'' their own assays and methods.
You can't blame them though. There is no glory or commercial patent opportunities in true replication studies -is there?
Its cold comfort to those of us who are severely ill, bedridden/housebound, without adequate medical care and or have lost our livelihoods, homes, friends and families and live on the streets.
Did you know that most of us know a PWCFS who has suicided after years of neglect and abuse at the hands of the medical and general community?
I certainly hope your sister does not have CFS, because there is no cure and she can kiss her job, savings, personal relationships and potentially - her life - good bye and most people will tell themselves she deserves to be there because she is lazy or they will pitty her state of affairs due to her mentally instability.....even though she can produce a long list of tests that show serious biological abnormalities.
I was going to say something flippant about this grim picture, but with the recent benefit changes it seems like destitution is a rather more likely and scary possibility. Curses.
i thought the wpi couldnt publish all the papers they have because the journals wont accept them?
That's too bad. My sympathy.
However, starting off by telling people they are not thinking things through (and carrying on in similar style) is likely to produce an uncomfortable experience for you.
I think, other than unsympathetic physicians, you do not understand our situation. This is understandable. The truth is the stuff of novels, movies, science fiction. Although I think most publishers would turn it down as too outlandish to publish!
Let me illustrate with an analogy:
Lets say that US doctors didnt know much about Tuberculosis, and it was a fairly new disease to the medical world (some years ago). There were some outbreaks in the US and around Europe, and some doctors in England studied, characterized, and named it, wrote textbooks, and the WHO made a listing under pulmonary disease.
The US had some outbreaks, and one at Lake Tahoe got some special attention. Doctors there (who couldn't diagnose it but knew it was contagious) called in the CDC. The media noticed this was a popular resort area and began calling the disease the Yuppie Flu. They ignored the fact that the disease wasnt limited to rich tourists but also waitresses and other people of all income classes. The CDC came with a junior member who looked at a few patients, wasnt too interested, and went back to Atlanta.
The CDC had to name the disease, however, and write a case definition. This they did rather carelessly, and christened the disease, Chronic Breathlessness Syndrome (CBS). They ignored pleas to use the established name of the disease, Tuberculosis, and they classified the disease as idiopathic, since they had not identified an infectious agent or settled on a disease process.
Since the case definition was not exact, it included persons with bronchitis (which was also not a well-known disease) and panic attack, both of which included the symptom of breathlessness.
The British government liked this development and British psychiatrists wrote a new case definition, with the new name, based entirely on the symptom of breathlessness (the only required feature of the definition was chronic debilitating breathlessness). Many of their patients with this definition had panic attack. They told all their TB and bronchitis patients they had CBS, and referred them to psychiatry clinics, and began treating them with a protocol designed for panic attack in hypochondriacs.
The US government noticed that this treatment was relatively cheap, and began to use that as well.
Unfortunately, one of the components of the treatment made TB patients very much worse. All the studies failed to record reasons for study dropouts. They made up various theories about why TB patients did not adhere to the protocol, always saying there was something wrong with how the TB patients interpreted reality or focused on "normal bodily processes" and mistook these for symptoms of a serious disease, or had phobias, or just wanted to stay on pension, or similar.
Society in general and doctors in particular had always been suspicious of TB because a causative agent had not been identified, because current medical testing procedures did not identify the disease process, and because (for the physicians) the CDC had classed it as an idiopathic illness. Since it is now being treated as panic attack and a hypochondriosis, and since many bronchitis patients eventually improve, they feel they are justified in the belief that TB is not a serious or real condition.
Health authorities specifically told doctors not to carry out any tests for TB except to rule out asthma and other known diseases, and not to use any treatments specific for TB, even though there were some tests and treatments shown by research to help some or most TB patients. There were even biomarkers suggested for TB. Because these did not work for bronchitis and panic attack, health authorities specifically said not to use them except in research.
TB represents ME/CFS
bronchitis represents CF (chronic fatigue which does not meet the criteria for CFS and could be from any number of causes, including self-limiting post-viral disease)
panic attack represents primary anxiety and depressive conditions
Back to this universe
There is a school of thought which methodologically mischaracterizes an infectious neruo-immune disease (ME/CFS), which the WHO has classified as neurological, as if it were a form of of hypochondriosis. This school of thought is the only one our governments listen to--or was, until XMRV got their attention and now we have two or three scientists interested, XMRV or no XMRV. As Alex said, they (not counting the exceptional interested scientists) exclude all inconvenient evidence pointing to biomedical pathologies of the disease.
ME/CFS research is allocated between $4-6 million per annum. To compare, multiple sclerosis (another women-predominated disease which has only recently escaped being diagnosed as "hysterical paralysis" to be properly classified as a neurological disease) gets $144 million. Asthma and Alzheimer's, which do not discriminate by gender, get $250 million and $450 million, respectively. All are serious diseases, and can be debilitating. The one with the least research funding has no approved treatments and no approved biomarkers (biomarkers are available, just not approved), and the patients have the worst health-related quality of life (probably from having no suitable interventions and often no social support, either).
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