I finally understand, Whittemore Peterson Institute. I get it. You exist to torment me. (video NSFW if you will get in trouble for throwing up at your desk)
There are a couple things people have been asking me to write about re: WPI & XMRV.
1-- The new paper
The lead PI on the "XMRV-->CFS" paper is a woman named Judy Mikovits. She is a nutbar. Everyone is out to get her, everyone is part of conspiracies to discredit her research, she consorts with anti-vaxers and snake-oil peddlers-- aka, nutbar. One of her many claims of persecution was that she has allllllllll these papers written but no one will 'let' her publish. Well, they have finally published their sequel to the "XMRV-->CFS" paper, and like all non-'Empire Strikes Back' sequels, it sucks. If this paper is representative of what they have been submitting to journals/meetings, it is painfully obvious why they are not being accepted, and it has nothing to do with the *DRAMA!!!!* (jazzhands) of XMRV. But at least she has to stop bitching about how no one will let her publish. So, theres a win after reading a shit paper:
Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature
They looked at cytokine profiles of people who had CFS and people who didnt have CFS. They were different. Therefore, the differences were due to XMRV, to the point where you can use the phrase "XMRV/CFS", you know, like "HIV/AIDS", LOL. *blink*
This paper would be rejected, universally, from normal journals for numerous reasons. The most obvious, is that the conclusions (even the title) grossly overstretch the actual data presented. They cannot make the conclusions (even the title) they made from what is in that paper. Let me make this clear: They could have gotten the data they needed to investigate what they said they investigated in this paper (but didnt). They did not. Your guess is as good as mine as to why they chose not to. What they need are the following patient populations:
1-- CFS, XMRV+
2-- CFS, XMRV-
3-- Healthy, XMRV+
4-- Healthy, XMRV-
Theyve got a 'test' for XMRV, right? Super awesome test no one else can do but them? So they could have gotten these four populations, easy. Then you get all four groups cytokine profiles, compare em, and you have a 'Journal of Immunology' paper or higher.
They did not do that.
They declared they had a cytokine profile associated with 'XMRV/CFS' anyway (even though they didnt test their healthy controls for XMRV, LOL. *blink*) and published in 'in vivo'.
The *data* contained within the paper, if addressed critically and honestly, could have been accepted into a normal journal. Similar data has been accepted before (impact factor 5 vs 'in vivos' 1). But they overstretched and made asses of themselves, because they just had to connect it to XMRV, even though they had no reason to (the whole paper could have been written without mentioning XMRV once. they mentioned it ~50 times).
Let me give you an example, from my own work:
I have isolated viruses from a patient at various time points. I have done lots of biochemical assays to measure this, that, the other. What I cannot do is say "I STUDIED THESE 20 VIRUSES AND THEY DID X SO ALL HIV DOES X!" or "I SAW X IN THIS PATIENT SO X IN ALL HIV PATIENTS!". What I can do is say "While we have a limited sample set, we did observe X, and can explain Observation X with Data A, B, C. While Observation X might not hold true within the entirety of HIV-1, other labs have also made Observation X within their own limited sampling, with different cohorts of patients with different Subtypes of HIV-1. Furthermore, Data A, B, and C could putatively biochemically explain Observation X, something no one has investigated before." You explain your data, you explain someone elses data, you say something new. This is how the field moves forward.
If I am being generous, I would say that they did not start with the right populations of patients and grossly overstated their data because they are mind blowingly incompetent.
On the other end of the spectrum is the assumption that they know damn well what they are doing, and just wanted to publish 'something' to justify selling CFS patients another expensive-say-nothing 'diagnostic test'. They mentioned in the paper they wanted to use this 'cytokine test' to assess whether antiretrovirals are working. So they could sell this test to a CFS patient, 2, 3, 4, more times a year? If I were evil, thats how I would do it.
*blink*
2-- The new sequences
I have no idea what the hell they think they are doing. They uploaded 11 sequences. Guess what these 'totally new clearly unique' sequences are.
Guess.
Guess.
Youll never guess.
SURPRISE!!!!
They isolated VP62 over and over and over and over and over! HURRAY!!!!
...
......
*blink*
You want a conspiracy? These people only exist to torment *me*.
- Log in to post comments
More like this
I can name several. Hypermethylating vitamins and B12 (methyl and/or hydroxy) injections and sublinguals being the most powerful (given the patient can tolerate this type of treatment as some cannot). The effects are profound for me.
In terms of medical journals. You aren't going find one that will satisfy the skeptics, but I can almost guarantee science will follow my (and many other patients) footsteps. I'm ahead of science.
B12 injections help me when pain medicine and other controlled substances can't. It's also the best sleep aid. They help me go to sleep and stay asleep. They help me get up in the morning. I got rid of my beta blockers because B12 does the work. Given that B12 is just a stinkin vitamin, I think that is profound.
Not a miracle cure, but they can make me completely non functional to functional in the matter of minutes to hours.
How about a link to media claiming this group of patients weren't suffering from something real?
idiot.
Whittemore :Headdesk: Pads. Now with wings.
Meh Cytokines Smitocykines...
This one generated so much 'feel good' factor amongst the faithful, I was hoping for more analysis ERV.
BUT... I canne blame you at all. Maybe there was no need to analyse :)
erv regardless of your personal views re xmrv etc, I have to play devils advocate here becuase you claim the "impact factor" of the journal against the current paper, but were very much behind the very swiftly published negative papers, you didnt note then that plosOne has a low impact factor, and plosOne is where a lot of the swift barrage of negative xmrv papers were published rather amazingly fast so soon after the original Science paper, if baffled me how fast they managed to crank out those early studies, and Science of course is a very high impact factor. I currerntly remain open to the possibility of xmrv playing a factor in human disease but I await more papers
Sorry, Jack! There isnt much you can say from the data they presented except "CFS patients immune systems are jacked up", and you might not even be able to say "CFS patients" with their data. You might only be able to say "these CFS patients", because of the unique characteristics of the CFS patients they chose for this analysis.
Thats it.
And, though I dont know much about the topic, I believe "CFS patients immune systems are jacked up" was already known.
Not much in that paper. Not even a reference to the paper I linked to on cytokine abnormalities in CFS patients... Crappy paper, man. Sorry!
virologystudent-- A normal journal (PLOS One, Journal of Immunology, Retrovirology-- all with impact factors around 4) would have accepted that paper if they were honest and critical of their own data. If they designed the experiment well, it could have been higher. They chose to do neither, so they published a substandard article in an extraordinarily low tier journal.
That was their choice. If thats what they sent to 'Journal of Immunology' or god help them, 'Science', then they deserved to be rejected. It wasnt conspiracy.
Then you better learn how to BLAST fast, honey child! Mikovits might be too dumb to do it, but I assure you that your professors and future reviewers will not be.
ERV - T'was British sarcasm on my part I am afraid - you have nought to apologise for :)
I sometimes read comments on CFS blogs. Commenters often seem compelled to list their diagnoses and self diagnoses in addition to CFS and provide an exhaustive description of their current symptoms. Like establishing bona fides I guess. Any human being with half of these problems, probably any human who thinks they have half of these problems, would have a jacked up (insert name of whatever system here). Hell, just lying in bed more than normal can change your cytokine profile or your CSF protein profile. No need for an imaginary infection.
The Dunning-Kruger affect strikes again!
Hey ERV, do you mind running through the steps to run BLAST on the WPI sequences vs VP62. Obviously I will not be able to draw any conclusions from my limited understanding but the picture you posted sure does not look like any significant variability.
The VIPdx currently offers tests to patients for measuring their cytokines profiles: http://www.vipdx.com/docs/TEST_RQN_Aug_2010.pdf I do not know what to think about this anymore. It is a conflict of interest but it seems many researchers profit from testing they have created and used in studies. I would have no problem with them making money off their XMRV and other tests if researchers were validating the results and the WPI were making reasonable claims; after all they need money to maintain their research efforts. The sloppiness of this paper, the overreaching conclusions from the data presented, the endless excuses for why others are not finding the same results, and the personal attacks on other researchers is what really bothers me and raises red flags not that the WPI is making money of tests.
Oh come on, ERV, the nutbar aspect of this whole schlmozzle must have really thrown you off your game. The first author was Vince Lombardi and you couldn't find it in you to throw out one little football joke?
I personally think this is an important paper, but I agree XMRV didn't need to appear in it.
Retrovirology fast-tracked 5 or so negative XMRV papers on the same day. It smelled like rotten eggs to me, so I waited for more research.
So, the current XMRV research does not look very promising. I agree.
However, if you are still convinced that XMRV and related MLVs are not human infections, I would have to disagree with you there based on recent research and research that is about to surface. But I will agree with you that the XMRV/CFS evidence is by no means strong.
It looks like there may be some good info coming from the 15th International Conference on Human Retroviruses, so I will patiently wait for the information. From what I've heard, the researchers seem quite enthusiastic now actually, and this conference doesn't appear to be loaded with the negativity that was evident at CROI.
I am a patient, and even if there is no connection between XMRV and CFS I hope the disease receives funding and research. I am afraid that if there is no association, the funding and research will dry up like it did in the past. That's my biggest fear.
But I am not going to rule XMRV in or out until the dust has settled - and no it has not settled yet. We must stick to proper scientific method to rules things out, and the BWG/Lipkin study will be important in this regard.
I understand that Mikovits (and Coffin for that matter) have an ego complex, but they are both accomplished researchers (and yes, I know you'd rather refer to Mikovits with fancy words such as nutbar). It's sad to me that they couldn't communicate with eachother in an effective way, and it was Dr. Alter had to moderate the two at the NIH State of the Knowledge Conference like children. I must say that I was impressed by Dr. Alter and how well he adhered to the scientific method while other researchers were more interested in interjecting their opinions all the time.
What I don't understand is why Mikovits would go so far if there was no connection. You can say follow the money, but that really doesn't make sense to me either, because if she is completely wrong about everything, she is essentially committing career suicide (and she knows that and has stated that several times).
I am sorry, but I do not know what you mean by this, or why you assume this. They use extremely well selected cohorts. If you wanted to say they were good at one thing and shitty at everything else, I would think you would say they have excellent, well-defined cohorts - but whatever you say.
Nevermind, I think I understand what you meant:
Random snippet:
VIRAL AND CELLULAR FACTORS GOVERNING EFFICIENT GENE DELIVERY
http://projectreporter.nih.gov/project_info_description.cfm?aid=8158079…
You might be more interested in all the technical therapeautic gene delivery stuff I left out.
I think I see how this works. Ahem. Activating woomeister mode:
Abby is clearly wrong to ask us for a cohort of Healthy XMRV+ individuals because XMRV causes CFS so XMRV+ people aren't healthy!
Abby is clearly wrong to ask us for a cohort of CFS XMRV- individuals because XMRV causes CFS so CFS people are XMRV+!
Buy our XMRV test kits! Guaranteed to always find XMRV!
Deactivating. Deactivating. Oh god. Brain hurty.
To use BLAST:
1) Follow the link to the sequences. Click "FASTA". Copy the CCAGCG... data in the results.
2) Go to http://blast.ncbi.nlm.nih.gov and click "Nucleotide BLAST" under the "Basic BLAST" heading. Paste the FASTA data into the "Query Sequence" box. Under "Database" select "Others" and then "Nucleotide Collection" from the dropdown list. In the "Organism" box type "Xenotropic MuLV-related virus VP62". Hit the BLAST button.
3) Wait.
4) Note that there are matches to the reference sequences that have 99% fidelity.
The point here, if I understand correctly, is that this particular chunk of XMLV (fyi it's a plasmid) has been pretty conclusively shown to be laboratory contamination.
IANACB (I am not a computational biologist) so anyone who is, feel free to explain what I'm doing wrong.
Suggest new slogan for ERV. "Yours are the wings of hope: ours are the surface-to-air missiles of facts."
Analyst, whether this will hurt or help CFS funding depends on how long it goes on and how much dead horse beating there is. Those who fund research really don't like to see money wasted. They really don't want to see research money spent on funding the ego trips of PIs unless that ego trip includes an answer. They really don't want to see the kind of âcompetitionâ that wastes resources and holds the field back. There are no shortages of fields where more money will lead to productive research and progress.
If the CFS field can't self-regulate itself via peer review of publications and peer review of research proposals such that there is the perception of lots of wasted money and pursuit of useless dead ends, then research funding for CFS will dry up.
When good researchers are vilified simply for wanting good and rigorous research, then good researchers are being driven from the field. A field that has good researchers leaving it because of back-biting and harassment is not a field where more funding would be productive.
Not a threat, a prediction.
There's a great slide from John Coffin's presentation at the NIH ME/CFS State of the Knowledge Workshop. It's pretty illuminating about the Alter/Lo MLV findings which the WPI are claiming provide evidence for 'sequence diversity'.
(unofficial excerpt from Coffin's presentation)- "So if we go back to our phylogenetic tree now and we put in these green dots- the samples that the Huber study found, we find that they just sort of plop all over this tree, more or less randomly- there may be a little concentration here but more or less randomly distributed across the tree. Here are all of the XMRV sequences for reference, here by the way. These again are quite similar, not identical but very similar to one another.
If we now look at Mary Kearney, a colleague at NCI Frederick, she did an experiment where she deliberatly took very very small amounts of DNA, she took 1/30th of a cell and distributed 1/30th of a cell over a lot of wells, amplified the DNA that was in there, sequenced those amplification products and so this is what you'd find from low level, deliberate contamination with mouse DNA. You tell me if that looks different, really different in any significant way from this (referring to slide). And this for comparison (slide) is what was in the Lo et al study, again I don't see any difference between any of these and I just can't come up with any explanation for this pattern of sequences unless it really is due to that."
The accompanying slide that Dr. Coffin refers to shows the Huber MLV sequences, the deliberate PCR contamination he talks about above and the Alter/Lo sequences. All of them appear to be basically identical on a phylogenetic tree and give a good graphical depiction of what is being discussed. Actually his whole presentation is a fairly good education on the contamination discussion.
Coffin NIH SoK XMRV/MLV presentation slide- http://i56.tinypic.com/2mqp3le.jpg
http://videocast.nih.gov/Summary.asp?File=16575 (Coffin presentation starts at 154:00)
*laugh*
You know how Creationists know everything? They have a degree in math, and they know biochemistry better than a biochemist? They have a degree in philosophy and they know physics better than physicists? A very special kind of arrogance that only wooers possess?
Here is Sir Gerwyns response to the screen-cap I took from Sequencher:
That is not how you do sequence alignments. You dont align 1-10 with 1-10, because sometimes one sequencing run started getting good sequence at -5, and one didnt get good sequence until 20. Figuring out how to align 200 sequences that all have different start points would be maddening. Thats why we have programs like Sequencher. [mockingly]This makes it a bit easier to see:
181 ccacggacac ccggatcagg tcccatatat cgtcacctgg gaggcacttg cctatgaccc
181 acggacaccc ggaccaggtc ccatatatcg tcacctggga ggcacttgcc tatgaccccc
becomes:
183 acggacac ccggatcagg tcccatatat cgtcacctgg gaggcacttg cctatgaccc
181 acggacac ccggaCcagg tcccatatat cgtcacctgg gaggcacttg cctatgaccccc
Tah dah.
And then we get this from a different credulous, arrogant asshole:
Yes, they do. I couldnt fit everything into one screen shot, but that particular sequence is ~840-890, with the C I emphasized above clearly visible at 846. Its the only difference between VP62 and the 11 'new' sequences in that region. lol.
I wonder if Mikovits is stupid enough to think the same thing about these sequences as Geryyyyyyyyyn does...
@15
As someone who just this past weekend finished a Master's Degree in CS with a concentration in Bioinformatics from Johns Hopkins, I can say that you are correct, assuming that you are correct in the statement "this particular chunk of XMLV (fyi it's a plasmid) has been pretty conclusively shown to be laboratory contamination."
BTW, the e-value gives you an actual "by chance" sort of measurement. I.e. The chance of two given sequences happening by chance is 1 in million/billions/etc. The fidelity is a good measurement, but the e-value is the actual computation.
I can't give you the direct numbers because I don't have the information to do the computations by hand, but I can say that with 300-400bp, that the XMRV sequence is the same as a known laboratory contaminant happened by chance is ridiculously small.
So, long story short, if what it matched to is a known laboratory contaminant, chances are the original sequence is a contaminant as well.
Kemanorel, and that is for a "one-of". If you have 11 (supposedly independent) sequences that match a known laboratory contaminant, the likelihood that all of them are not contamination is calculated by multiplying together their individual likelihoods (if they are independent, that is what you have to do). It becomes:
(1/(millions*billions*ect))^11
sort of fitting that 11 comes into play, 11 being the little bit extra umph that Spinal Tap paid extra to have put in their custom amplifiers (generic amplifiers only going to 10).
That's true, daedalus2u, but all they really need is for one of them to not be a contaminant, so we can keep each of them as an independant test. The problem is demonstrating that they aren't contaminants, which by what has been shown is by far the most likely situation.
Where the principle you demonstrated can really come into play nicely is for evolution when talking about ERVs. To have happened by chance, it is 1 in billions just by their placement in the genome, then you have to add in the chance at the sequences match, and then it's to a power of (IIRC) 9000 or so.
BTW, daedalus, that's funny that you brought up the Spinal Tap reference. I wouldn't have gotten that just a couple weeks ago because I'd never seen it before. Woohoo for Netflix.
What about prostate cancer? You got proof that's all contamination too?
Scientist, you are. A blogger one, that is. A skeptic, you are not.
:blink:
WTF are you talking about?
I echo Kemanorels 'lol wat?'. If you want to know what I think about XMRV and prostate cancer, there is a search bar in the upper left powered by Google. Im assuming I dont need to give you instructions on how to Google, but Ill make things easy for you: XMRV = Lab contaminant.
Contamination?
"In collaboration with Frank Ruscetti at the NCI, Bill Switzer at the CDC and Suzan Winfield and Jessica Siegal-Willcot at the National Zoo, we are investigating the source animal for XMRV, and screening gibbon apes in US zoos for the presence of GALV and XMRV. We have obtained samples from the CDC and the Biological Research Steering Committee that provide us with materials permitting us to determine that many gibbon apes at various zoos have been infected with an XMRV-like virus. We have determined the cell tropism of XMRV using an engineered biologically active XMRV virus with a GFP reporter gene and are identifying cellular factors that restrict XMRV infection of receptor bearing cells. These factors that can restrict XMRV infection will be used as a means of developing XMRV antiviral drugs. In addition to being a horizontally transmitted infectious agent, XMRV is a threat to the human genome."
http://projectreporter.nih.gov/project_info_description.cfm?aid=8158079…
21 papers off of that grant and 0 are titled "xmrv is bringing upon us the zombie apocalypse"
Dancing Rodents to you. How is ole Johnny U these days?
I strongly disagree that XMRV in all cases is a lab contaminant. Lots of new research is about to be published real soon, and we'll see where that heads.
I agree that the evidence at the moment is heavily against the association of XMRV/CFS.
However, you know those pretty cytokine/chemokine profiles present in the study? Well, I have contact with people that have tried or are on anti-retrovirals.
While my impression is that the patients do not benefit from these drugs, some strange things happen.
Certain cytokines will go to normal levels. Ok, they may be acting on other viruses, etc. Right. I get it.
However, what I don't get is that when certain cytokines go from extremely elevated to normal, other cytokines that were previously normal will spike extremely high. However, from my observation, even the patient shows little signs of improvement, but their symptoms may change (perhaps something like an increase in cognitive symptoms and a decrease in physical symptoms).
Can you please explain why this weird shift happens like a seesaw effect? Do you think it could be another retrovirus (not XMRV related) that current antiretrovirals are not highly active against? Thank you.
Thanks. :-) It's fantastic. There's some new buildings go up at the satellite campus in Rockville, which looks like it's quickly growing because of the bioinformatics/biotechnology growth in Rockville and Bethesda.
As far as classes and everything, I had absolutely fantastic teachers who were experts that were actually in the field they were teaching, so they not only knew what they were talking about, but also provided real-world information, in addition to simply being enthusiastic about the subject. In particular, Systems Biology and Biological Databases & Tools were just fantastic for everything I learned in them. (Not to discount any of the classes but those two stand out).
What's really cool is that to get a concentration, you only need a minimum number of classes, but you can actually take as many as you want. So, out of 11 classes, 7 of them were bioinformatics related, which provided a great opportunity to push my expertise into biology from a computer science background.
And now the bioinformatics background may very well get me into the Master's in Biotechnology program and then a PhD program, so attending JHU is easily one of the best opportunities I've ever had the privilege of getting.
IMHO, I did not think that there was another group that could frustrate me as much as the IDiots do..
@The Analyst and Jermal..I'm sorry you guys are stuck with this shitty condition...but moving the goal posts and cherry picking the data isn't helping..(and I'm not accusing either of you of personally doing this...but that is what seems to be happening with the xmrv debate..)..
I would be somewhat worried about future funding as my experience with MS research is that whenever there was a "dust up" ..it seemed that funding got harder, esp. from the private sector..However, I don't have any data to support this...JMO.
and I don't know why..but I was actually a little embarrassed for Judy bacause in my little section of the lab world, people actually LOL at the methodology in this paper...
You realize that your "strong disagreement" is about as convincing as someone who is "strongly convinced" they're going to win mega-super-awesome-powerball-jackpot thing several weeks in a row, right?
TL;DR version: Drugs affect way more than just the intended target.
Long (and still simplistic) version: Because this is how gene networks work. There's lots of proteins that work together in all sorts of ways. Some inhibit gene expression, some promote it, some have direct effects, some increase/decrease the production of proteins that do have direct effects... it is an extremely complex system that had a ridiculously large number of variables, including every single individuals genome.
Whenever you put a drug into someone's system, you have to deal with ADME-tox. i.e. How your body deals with it.
There's really no such thing as a drug without side effects because even the best ones will effect more than just the intended target. And you're wondering why after taking a drug meant to affect the immune system there are effects on cytokines, a part of the immune system?
I would be surprised if there WEREN'T effects on parts of the immune system, as well as several side effects.
I blasted all the published sequences, and it all looks like a bunch of VP62.
However, I am wondering what the expected variation would typically be if it was a true human infection.
@John V.
Hmm... I see what you mean: http://www.cfscentral.com/
CDC Press bloke posts sommit 'funny' on CDC blog. Some feel whether in irony or in reality (hard to tell these days), that the tale of Resident Evil is the tale of XMRV and its' associations: 'Sounds Like ME/CFS to Me'
Some think - hey what was that guy doing posting this shite on the CDC blog? Research ME/CFS you muppet.
I think he was having a laugh - so I laughed too. Ooopppsss...
Any Zombie Apocolypse and I am blaming ERV for not spilling about her secret underground experiments :)
They know damn well what they are doing. They know what they are selling and they are a marketing machine. People don't become billionaires by accident. Do cranks/quacks become cranks/quacks by accident (unless they really are insane)?
Like any quack, they are selling false hope. Only, to the patients, it is real hope. They don't know that the people selling it to them know it is false hope. In order to sell false hope, they have to convincingly sell it as real hope and even delude themselves.
They don't have real hope that a cure or treatment will reach these patients during their lifetime. Thus they sell them false hope to get them through their lifetime.
Smurf, I know where you are coming from, but I can't help laughing out loud about all this.
I mean don't these 'offended' peeps as well as the 'OMG they are talking XMRV/CFS aren't they! OMG! OMG!' not find it really, really funny?
This origining (I believe) cartoon series had me in bits - then I am British and well... you know...
http://theoatmeal.com/comics/zombie_how
@Mary
Thanks for you kind reply. Most patients are not worried by the impact on the funding, because funding is very little at the moment, almost none. Personally I don't think the situation can get any worse... but I might be wrong.
XMRV is still very exciting for many patients as it offers the opportunity for funding and maybe even treatment. I personally don't think XMRV is contamination, but I admit I graduated at Google University. Also I am not making claims that the virus causes disease, just saying I think it will turn out to be a real virus. In june there's another retrovirology conference and many presentations will be given on XMRV. Let's see what happens.
And I loved that Zombie cartoon!
Hey Jemal what's with the 'most patients' 'many patients' malarky - you speaking on our behalf or what?
I am concerned very much so with the WPI and Mikerknickers and the effect this might have on funding, more so on the effect their dalliances will have on serious folk taking an interest in the future.
XMRV has remained exciting only for those who have been coerced into thinking they carry an infectious human retrovirus (sorry gammaretrovirus) that is responsible for their suffering; and a whole lot more dangerous stuff besides - including the ARVs are cool business.
Some sufferers who are 'positive' are misrepresenting the greater population - that's my suspicion and not a generalisation. And their persistent harrasment is not doing 'us' any favours - not any more.
Most and many I am afraid don't cut it with me. Too many people seem content to give the impression that significant numbers of their fellow sufferers (but only really those they deem worthy of that title) share their fervour and belief in the 'holy grail'.
Probably an oversight on your part - but it bugs me is all.
Lets be honest Jack, not many honest folk were interested in ME/CFS even before the XMRV controversy. I don't think we have much to lose and we might even gain a lot.
I guess I should not speak about "many" or "most" as like you I have no idea how many patients have their hopes riding on this XMRV thing. I understand I have given you some offense, so I apologize for that.
We will see how it all turns out. I believe times are changing and in a good way.
Hi ERV,
CDC will now look for XMRV and MLV in their own lab workers !
[spam removed by ERV]
@Jemal
No offence taken - like I said it is just a bug-bear of mine. You know all these estimates flying around and being quoted in association with 'epidemics' and HIV/AIDS... etc. etc. it just gets me sometimes - who is actually representing anyone anymore?
To be fair to him I think he only has degrees in everything almost relevant to whatever he talks about, not in everything. He's only a microbiologist or a psychologist, depending on whether he's complaining about virologists or psychiatrists at the time. I guess that lets him pretend to any complete laymen that he'll know better than them, but gives him a chance to pretend it's just that he doesn't know all the right terminology any time anyone that actually knows what the hell they're talking about can't even work out what he's trying to say.
@ Smurfette #36
The WPI dynamic is somewhat more complex than you suggest. There are quacks that cynically exploit the vulnerability of others, and there are quacks who sincerely believe their own quackery, and from that adopt an authority to involve others in their âtruthâ. The problems with the WPI come from its lack of scientific cogency which is in turn the result of its foundation upon an a priori proposition of illness character, and the complete absence of any disinterested scientific presence in its governing process. There can be no doubt that the Whittemore family âbelieveâ in M.E/CFS as a ârealâ disease, however Iâm not sure that the âhopeâ that WPI is selling has been the source of any delusions for the Whittemores. The WPI is constructed in a way that maximises âconfirmation biasâ so that any âpositiveâ result is treated without scepticism, and any ânegativeâ, including external ctiticism, is treated as a âfaultâ which needs to be corrected. It is this confirmation bias and the lack of any internal challenge to it that produces a corporate delusionalism within the WPI. In my view the WPI situation raises concerns about the role of private tax advantaged Institutions involved in medical research, that goes far beyond the M.E/CFS or XMRV issues. WPI has been able to garner over $1million in Federal funds to support a research programme that is predicated upon a dubious notion of illnss character â neuroimmune disease, without a single scientifically competent person holding a position on the WPI board.
Kemanorel-- My immediate thought, for an example, are the anti-inflammatory properties of antibiotics, a side-effect capitalized on by Chronic Lyme Woo. Especially considering how cozy WPI has gotten with Chronic Lyme Woo, I am sure they are aware of this.
IVI-- Where do you put Andrew Wakefield? The similarities see between him and the WPI are legion, and the list is only getting longer.
Dr. Speedy-- Are you ever going to contribute to discussions here, or are you going to spam links to your blog and run?
That sort of cross-over between CFS and Chronic Lyme really wouldn't surprise me at all.
I think the âanti-inflammatoryâ effects of antibiotics are (mostly) mediated through the Jarisch-Herxheimer reaction. Cytokines are what cause sickness behaviors including things like the fatigue of sickness.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2740752/
Sickness behaviors are triggered and regulated responses to sickness. That triggering and regulation is mediated through pro-inflammatory and anti-inflammatory cytokines. There needs to be a âbalanceâ between the pro- and anti-inflammatory cytokines or you get multiple organ failure or insufficient immune system activation. The major anti-inflammatory compound is nitric oxide, which inhibits NFkB. One of the things that robustly âturns onâ the immune response is the inflammation of the respiratory burst. That produces a local lowering of NO, which upregulates NFkB, which then causes the expression of many pro- and anti-inflammatory cytokines (but in differential amounts).
My hypothesis of CFS is that it is the ultimate consequence of what I call the âlow NO ratchetâ, where immune system stimulation under conditions of low NO (i.e. high stress) potentiates the NFkB response which increases expression of iNOS which increases NO levels during the acute phase of the immune response (as in sepsis). This high NO level then causes feedback inhibition of constitutive expression of nNOS and eNOS, which results in a lower basal NO level following the decay of iNOS (iNOS expression is transient, so the NO it produces is transient too). That reduction in constitutive eNOS and nNOS is part of the normal regulation of physiology, the âauto-tuningâ, one of the mechanisms by which automatic gain control is instantiated. The reduced expression of eNOS and nNOS lowers the basal NO level and reduces the threshold for activation of NFkB the next time.
Chronic antibiotic use only kills non-resistant bacteria in the gut, the antigens from those dead bacteria trigger the immune response, trigger the respiratory burst, trigger NFkB activity, trigger iNOS expression and cause a transient increase in NO levels (until the iNOS gets cleared). That cycle activates the âlow NO ratchetâ and makes CFS (and chronic Lyme) worse in the long term, even as it resolves symptoms temporarily.
ERV -- please clarify. Our favourite armchair retrovirologist has stated this "The env region is the most hypervariable some of theGAG isolates have a 2% max identity variation from VP62 in a 300 base sequence from an 8 kilobase genome this may not be apparent at first but a PCR based on vp62 using high stringency primers would easily miss these sequences." So he is saying the wpi sequence results using BLAST that show they are all VP62 etc is not correct. Please explain why he is incorrect. Thanks so much.
You can look at the Sequencher alignment I did and plainly see they are all VP62. No one even needs to BLAST those sequences-- I did the alignment of VP62 to the 11 sequences for you. I only posted the majority of the 5' end, but I can upload the last bit of the 3' end if you like?
Re: Morons comments-- I have no idea what he thinks hes saying. Env has nothing to do with anything, as the sequences the WPI just uploaded are not env.
Interesting. An anti-inflammatory that initially exacerbates symptoms to the point where I end up in the ER getting radiated by CT scans.
I couldn't even tolerate doxycycline, but now that it's decreased symptoms, I can't get off of it without symptoms returning.
Mmmm... anti-inflammatory. It's fun assuming. Please direct me to an anti-inflammatory that actually works without destroying all the "good" bacteria in my gut.
If such a thing existed, I'd be on it. However, I think I tried every single one on the market to the point where I had internal bleeding.
And if you don't think it's infections, the NO hypothesis from whoever he was makes a lot more logical sense to me than anti-inflammatory effects guess.
IVI-- Where do you put Andrew Wakefield? The similarities see between him and the WPI are legion, and the list is only getting longer.
Iâm not sure there is any direct equivalence between Wakefield and the WPI, and importantly science isnât going to give the "XMRV = new Aids = screen every blood product or weâll all die" meme the same run that "MMR = autism" got; by mid 2012 XMRV will either be shown to be significant or the Lombardi et al study will be dead. That will not stop the fanatics of course but thereâs not going to be the undue validity give to WPI that many clinicians and researchers gave to Wakefieldâs work for several years after it was published. That aside thereâs a huge difference between WPI and Wakefield, as generators of âillness theoryâ. The WPI was from the outset a highly âbureaucratisedâ and formalised entity â the science(such as it is) has followed upon the bureaucratisation process, where as in Wakefieldâs case the science(albeit fraudulent) is what allowed the production of the Wakefield personality.
In Wakefieldâs case as soon as the science started to unravel his only route was to âformaliseâ himself, firstly into a firebrand preacher and then as head of his own bureaucracy, though ironically that bureaucracy expelled him in the end. The WPI is something more resilient and actually at this stage is probably capable of recasting itself as a respectable science based institution. Even if the Lipkin and BWG studies rip the 2009 Lombardi study to pieces, thereâs still a chance that the WPI will put their hands up and say, we misjudged our results, mea culpa (or whatever the plural is), science moves on and so are we. There will probably have to be a one two sacrificial victims but as an entity the WPI could continue, though it would very likely need to âre- presentâ its nutty neuro-immune disease proposition as something less contentious. The WPI has been very closely linked to Nevada politics and a sustained poor public image of the WPI could impact on any future electoral candidates who had supported the WPI or were connected to the Whittemore family. That political connection would be a strong driver for change should the WPI become an electoral issue; the alternative would be for the WPI to be aggressive in its defence but itâs difficult to see the University of Nevada being happy being at the centre of the kind viciousness that would likely be entail.
Hold on a second there ERV!
From the original Science paper.
And...
Perhaps you are not as clever as you may think you are.
As it takes one to know one, I believe the moron is actually referring to the new env sequences uploaded by Switzer.
Of course, it still doesn't make sense, but I am sure the argument reduced the cognitive dissonance caused by those new WPI sequences to tolerable levels.
@The Analyst
You seem to be the "not so clever one" as ERV was not talking about the Lombardi paper but about the new sequences uploaded by WPI, which are only gag sequences.
Short summary as I understand it:
WPI: "your PCR for gag may miss 'wild' sequences because we are now finding much more variance tan originally reported in the gag sequences we detect."
WPI: *upload new gag sequences that all those PCR tets should have detected*
Moron et al.: "env!!11!"
amidoinitrite?
Daedalus, for the love of mercy, write your thing about NO on a web page somewhere and stop writing it out over and over again on erv. It's a waste of bandwidth unless and until anybody finds some evidence.
Hey, I just wanted to send out a message to those people who are buying into the XMRV hype. First, let's assume that everyone agrees that XMRV is linked to CFS. What scientific data do you have that would even hint that an active lytic replication inhibitor (which is what all those loonies are taking) would do jack shit to effect the disease course of a neuroimmune condition? Autoimmunity is not HIV. Relatively speaking, linking HIV to AIDS was a cake walk compared to understanding how a virus induces an autoimmune reaction. Why does measles only cause subacute sclerosing pan encephalitis in 1/100,000 and takes place years after infection? Hell if I know. Why do literally millions of people harbor HTLV-1 but only a tiny fraction develop TSP/HAM or HTLV-1 associated lymphoma. Why do 50% of people exposed to EBV post-puberty develop mononucleosis and the other 50% are asymptomatic? Why do many mono patients develop autoimmune hepatitis and others do not? Riddle me that. (And BTW, antiherpetics don't do shit for mono either.)
There are autoimmune diseases whose association with viruses are essentially unequivocal at this point. And they've tried lytic inhibitors which knock down the virus but they haven't had any effect on disease course. Ever heard of latency?
So, even IF XMRV causes CFS, the likelihood that an antiretroviral would affect disease course is remote. You're hopelessly naive if you think that there's a drug on the shelf that would magically cure you if everyone would only listen to what the loonies at the WPI are saying. That's not the way it works!
Get a clue. And stop thinking that because you have every hour of your day to play on the internet that you really know what the hell you're talking about. Do you want to help patients with CFS? Use your energy trying to raise money/awareness for your disease rather than playing armchair scientist on some blog. Many of us work in a lab everyday doing research on many different types of diseases and any honest one of us would tell you that we basically don't know what the hell we're doing. Any one of us who tells you that they have it all figured out is completely and utterly full of shit. But the good ones will admit that and back down when all the data tells them their hypothesis was crap. The bad ones call Jenny McCarthy.
Oh yeah, and don't think that people like me are just insensitve bastards. My wife has MS and she shits and pisses herself regularly. She can't walk. She can't drive. She can't move from her wheelchair to the toilet without help. She has a hard time talking. She's broken her arms five times from falls and steroid induced osteoporsis. She can't feel her hands and persistent tremor keeps her from writing. She has difficulty swallowing and her cognitive function is clearly deteriorated augmented by high dose narcotics to treat neuropathic pain. Oh, and yeah, she's really tired too. And every last dollar I make goes to paying for her medical care. So piss off if you think I can't possibly understand how hard it is.
Forgive my language but I'm in a pissy mood today and needed to vent. ERV isn't the only one whos gets to throw a hissy fit at stupidity.
Perhaps there may be a strategic reason they only uploaded those sequences so far, and I'm sure they will discuss it in detail at the upcoming conference.
I do not think Mikovits is a moron, but I do know the evidence is against XMRV/CFS connection. I felt like the WPI shot themselves in the head after I performed a blast on the sequences.
However, I will say it again, I think there is a reason these sequences were uploaded and I will await the upcoming reasoning. They aren't as huge of a surprise as I initially thought they were.
@The Analyst
C'mon. There's always some new, yet to be published finding that will 'make the poltics go away shortly'.
There is one even more damning circumstance that hasn't been addressed: by their own admission, the WPI will sequence every gag product they detect. These 11 sequences are therefore not some set of random sequences that they have found and uploaded, but are in fact chosen by WPI because these were the "most diverse" sequences out of all those hundereds of gag sequences that they have found thus far. Thus, all those other sequences that they have found are even closer to VP62 than these sequences.
But no, it must be that Mikovits works in mysterious ways. I'm sure I've heard that before.
IVI - I see the things you are saying. I don't think my comment excluded the complexity, but I wasn't going into it, and personally I was looking more at the psychological motivations rather than the bureaucracy. There's no doubt they believe in CFS as a real disease, but I do have doubt they believe in the science and treatments they are promoting, even though one of the hope-sellers is also a patient. Now that is a strange position to be in. A mother will do anything for her child.
'A mother will do anything for her child'...
Insert parliamentary representative and constituent and here come the Brits:
http://www.meassociation.org.uk/?p=6129
Straight into welcoming arms of the WPI and Miss Knickerfits.
Invest in ME conference:
http://www.investinme.org/IIME%20Conference%202010/IIME%202010%20Intern…
and then playing Belfast to a full house...
http://www.meassociation.org.uk/?p=6263
Well that's some promotional whistle-stop!
Good point.
By the way, if anyone wants to help raise free money up to $500,000 for CFS research, not at WPI, please use 1 of your 5 votes for the CFIDS Association in Chase Community Giving on FaceBook.
http://bit.ly/kQkWKR
They have recently funded researchers at Cornell, NYU, and other universities, and are currently seeking applications for a new round. $500,000 could add another 5 research grants to the 6 they are planning to fund.
http://cfids.org/research/current-grants.asp
I actually do believe it or not. Since I have a background in web development, a team of us have created a rapidly growing social network for young people afflicted with chronic illness of many types.
Site was launched a week or so ago. We have about 150 members so far, and we currently have about +/- 3-10 active members (pretty diverse) at any given time, which really isn't bad. So the good news is, people are using the site.
Tonight we hosted a special web event and had about 15 or so members show up.
Pretty good for one week, eh?
Oh, and my energy? It's pretty darn good since starting back on doxy! Days are still unpredictable, so I really can't work for anyone but myself.
I've been up since 9 AM. It is nearly 2:30 AM now, and I still have energy to comment after working on some site content and bugs - but CFS truly isn't about being fatigued anyway. Many, if not most of us get spurts of energy as it gets very late. Why this is, I don't know. Mornings are probably the worst part of the day for most.
And you be surprised, we have many with ME/CFS and nobody has mentioned XMRV. While I don't think it's game over for XMRV, I think you guys would be proud.
The focus of the site isn't really illness. It's more about meeting people you can relate to (or people near you), and having fun even if you can't get out of the house. It's a very positive vibe even though we have quite a few members that are bed bound. We also have members with last names you would recognize. And they are very great people.
I'm doing a more boring corporate free lance job as well for an engineering firm.
I may not drive a car, and I may not get out a lot, but I think it's fair to say I am doing a lot with my time considering my circumstances.
ERV -- sorry to be a pest but what the heck is crazylegs going on about here?
http://www.mecfsforums.com/index.php/topic,7419.0/topicseen.html
Some lay advice for people who don't feel well even though doctors can't find anything wrong with you:
1. Follow a regular sleep schedule, don't give in to "bursts of energy" at 1AM or staying in bed until noon.
2. Talk to people, face to face, in real life.
3. Get a regular job and work hard.
4. Get off the internet and go outside, get some sun.
5. Get some exercise.
They once called this "mental hygiene." I'm no doctor, but I think it would work better than ARVs, antibiotics, vitamins, transfusions, Internet groups, and research funding to help "CFS" patients like The Analyst get their cytokine profiles and CFS proteomes and maybe their lives back to normal.
But that's because you're a fucking idiot.
Evidence? We don't need no stinkin' evidence! It's got a silly name. That's all the proof we need that nothing's there. Well done.
I'm looking forward to ERV ripping Dr. Coffin's paper on the origin of XMRV apart.
Oh that paper is not out yet? Ya, I'm probably just making stuff up. ;)
My lab tests look like an 80 year old. Guess you are talking to someone else.
I've been checkin' out this Chase Giving thing, since WPI is floating near the top of the crop. I know they have added benefit of marketing their "wings of hope" to autism, FM, MS and nearly every other mystery illness under the sun. That boosts their numbers. But I wonder if the people know about the possible mar on their name/contest if XMRV goes down in flames as predicted? The posted rules exclude charities involved in any kind of scandal. The Levy-Peterson study is still pending and sounds like Coffin has damning evidence on the way. The Chase folks ought to know they're sitting on a landmine. I submitted the links to the Nature and Chicago Trib articles using the "Concerns?" form from the WPIs Chase page (http://bit.ly/lgSzGG). No financial institution wants to be burdened with scandal when there are 99 other charities to give money to. Later. Deeno.
The more I look into this WPI, the more I see a real Greg Mortensen/Three Cups of Tea brewin'. They con the state govt to put up $75 million for a glistening new building. In the meantime, their medical director-the P in WPI-comes to his senses and realizes he's better off in private practice on the other side of a mountain range. They get the place open, but have nobody to see patients. That was in August of 2010? Even with all this "success" and pent up demand for service, they can't find a doc to open the clinic. The pamphlet they posted up showed the handsomely decorated treatment and infusion rooms, but the place looks as hollow as their souls. Just like Greg Mortensen's schools in Pakistan.
The three doctor gals they have enlisted make quite a team of Harvey's angels - Dr. Judy, Dr. Donnica and Dr. Jamie. Dr. Judy has had as many titles for her job as she's had papers with original data. Oh yeh. Just two. Dr. Donnica parachutes in every 6 months to share her wisdom with Dr. Oz or some other crackpot tv doc. And blogger-extraordinaire Dr. Jamie decided herself she's a contractor with no intention of ever seeing patients. Just tidying up the place for whoever comes next, announcing unpopular reimbursement policies via her blog and suggesting her daughter's tapping therapy might be a useful adjunct to ARVs while she vacations in Hawaii.
Yep. The place is a real asset to the patients. As it sits there empty.
AV - It's cheap PR and advertising for these charity contest companies. They don't respond to e-mails. The way their contests are structured kind of shows they don't really care who gets their funding. But yeah, try anyway. While you're at it, how about contacting the Vivint Gives Back folks too. They are going to win that one too. You can also vote for the 4 orgs placing under them. I think it's cool that CFIDS Association just got a vote from TWiV. Guess who he didn't vote for.
I so love it when 'Drs' start bloggin their own perscriptions:
http://treatingxmrv.blogspot.com/
Gives me that warm glow and a need to 'replicate'. Off now to the chemist and find all those lovely drugs ;)
Look who they've got backing them in the Chase Giving thing now. We're all rescued.
They're comparing WPI to Wakefield in the comments now too.
What would it take for Dr. Treating XMRV's medical license to be revoked or at least investigated?
Maybe the more they compare WPI to Wakefield, the better the case for being disqualified, except it's not an official association. They're on track to get nearly $500,000 between Chase and Vivint. Yuck.
@ AV #70
They con the state govt to put up $75 million for a glistening new building.
The WPI only occupies part of the Center for Molecular Medicine, although the CMM itself was âseededâ by a âpledgeâ of $5 million from Harvey Whittemore of which only just over $1 million was called for by the University of Nevada. There are no public details of the occupancy relationship between the U of N and the WPI but itâs possible that WPI is paying a market rate. Whether the Nevada politicians think they got a good deal probably depends on Party affiliation rather than concern for the academic good standing of the U of N. The idea that the WPI was ever going to be clinical centre was always hype over reality although Petersonâs involvement made it a theoretical possibility. It seems likely that the everyone at WPI got to believe their own propaganda and actually thought they were going to be curing the (non existent) XMRV disease with patients flocking from across the US to Reno for private consults and treatment.
I think it is very wrong of you to write such un kind words about WPI.
No one knows how the end picture will look on ME CFS XMRV, no one.
The FDA, NIH, CDC, NCI and a blood working group are all looking into this.
Thankyou for taking the time to read my message.
Kate.
I have a twitter page where update the latest news on xmrv.
http://twitter.com/#!/XMRVpositive_UK
Smurfette, where do you see that TWiV voted for the CAA in the Chase contest? Thanks.
John, I happened to check the voting page right after he voted so I saw his profile picture linked on the featured recent voters. Also says so on the Facebook page: http://www.facebook.com/thisweekinvirology
#71/#75 - You're probably right. I used to work for banks in "loss prevention" (aka fraud) and it all comes down to behavior. Something just ain't right about this outfit. But like you said, there's probably little chance anyone will stand in the way of them winnin' money to grease their slick test-for-nuthin' operation with a fancy clinic to feed the cash cow lab. At the banks, they were more worried about how many lollipops or dog biscuits the moms cruising the drive up tellers could request then they were the real sources of loss and fraud. Answers just won't come from any group that likens themself to Wakefield and teams up with Age of Autism and wooers. Erv's got it right. Later, Deeno.
You're gonna love this:
http://www.freepatentsonline.com/y2011/0117056.html
(suggest dose of anti-emetic and activate torment-deflection shield)
Yes Wise I see what you mean. Listing ARVs (and specific ones at that) as 'treatments' when causation is merely speculative at best... Words are failing me right now... but will not prevent others of that I am certain:
http://www.mecfsforums.com/index.php/topic,7463.0/topicseen.html
I think it's wrong of you to continue to think WPI has any kind of answer dispite all the problems.
But it's true that we don't know the end answer, but we do know it's not XMRV.
A question for those knowledgable about BLAST-
On a certain forum someone stated the following in regards to a BLAST query for two sequences (one sequence being a recent WPI upload and the other being VP-62) which had 100% identity with 88% query coverage- "Blast selects for matches and discards non matched areas hence for example with an 88% query coverage there is no reference match for 12% of the sequence under investigation but 88% of the remaining sequence is 100% homologous to VP-62" and followed with "...in 12% there is no match on the database so that gives you the variation".
So basically this individual is saying that since there is only 88% query coverage, with 100% matching in the sequences compared, that this means that there is a full 12% variation between the sequences under comparison. Are the above statements a correct assessment of this particular situation or of BLAST in general? Thanks a bunch for any help.
Morning ERV,
I have been - for my sins - rereading a little of your blog following the publication of Lomabardi et al in 2009, and came across this article - among many referenced:
http://www.sciencebasedmedicine.org/index.php/neurosciencemental-health…
...which was followed up by this one from the same publication in January 2011.
Anyway, it got me to thinking - again (I know dangerous habit for a non-professional like me :)), IS replication even possible? I mean enough to be of significance to 'science'?
Sorry - probably old ground raked over and all... but... (yeah always buts in this jolly old life eh :)).
Apols the link to the January article is:
http://www.sciencebasedmedicine.org/index.php/basic-science/followup-mo…
It's clear from reading the article and title from post 85 that the author knew nothing about CFS is probably mislead by the misinformation the CDC perpetuated all these years.
It's unfortunate that there is STILL huge misunderstanding by many in the medical professional, but I guess we can't expect everyone to be perfect.
In terms of contamination and XMRV, perhaps his theory will be proven right, but other than that, there is an abundance of factual errors throughout the post.
If you know nothing about CFS, don't write an article pretending that you do, especially on a blog called Scienced-Based Medicine.
erv stated that XMRV=contaminant
could somebody please detail how this could be a contaminant?
http://www.hindawi.com/journals/av/aip/965689/
virologystudent--
I dont know on what planet you normally reside, where someone who displays such a lack of basic knowledge (BLAST) and basic logic can pass as a 'virologystudent', but Im going to humor you and assume you are some kid who took a class in micro which had a module of virology, so you fancy yourself a 'virologystudent'. Not an asshole using the handle 'virologystudent' in a transparent attempt to gain some sort of unearned ethos on this topic.
So Ill give you some Pro-Tips so you dont make an ass of youself if you do one day decide to become a graduate student in virology:
1-- If, through direct intervention by some deity, another lab determines XMRV is actually a real pathogen, that has *zero* impact on the fact Mikovits and Alters papers are clearly the result of contamination. For example, just because scientists could find what Hwang Woo-suk proclaimed he found, it doesnt mean Hwang Woo-suks work was not fraudulent.
2-- That paper is in a journal that does not have an impact factor. It doesnt have one. Which tells me either their work is beyond 'controversial' (doubt it, the data this paper is derived from was published in a normal journal), or the paper sucks (could be any number of reasons). It doesnt have an impact factor. I mean for fucks sake.
3-- I have stated this before on ERV. Amazing how much you can post here when you cant be bothered to fucking read, 'student'. Infecting macaques was not magic. This paper is derivative of a previously published paper where they gave macaques a putative lethal challenge of XMRV, and nothing happened. So good for them, they found XMRV somewhere. Considering the difficulty they had getting any kind of infection via IV, that the virus can successfully mediate infection via sexual intercourse is beyond doubtful, and not something they established in that publication. There is *nothing* impressive about that publication. And just to make this 100% clear, here: three animals died for this shit. Our cousins died for a shit publication in a shit journal. I ashamed for my field.
If you are planning on actually becoming a virology student 'virologystudent', you need to fucking learn how to think, and to think for yourself. Rely on someone like me to think for you, all your grants will fail, and all your papers will be rejected. Or published in a journal with literally no impact factor.
hello ERV, the fact you get so worked up so easily is rather amusing although I do worry about your blood pressure. That can be really bad for you.....
anyway...I find it funny you lecture me about how to think when you yourself cant have a debate with anyone without ranting and trying to band around accusations.
My original point is that YOU said XMRV=contamination, my point is it infected the monkeys in those tissues and the paper actually states why it cant be contamination. Regardless of Lombardi et al and Lo et al, the fact is XMRV is unlikely to be an contaminant, but wierdly you seem obsessed with "impact factors" kinda very old fashioned idea that really. I prefer to stick to the science itself and the quality of the scientists doing the science.
by the way you didnt explain how the monkey study test results could be a result of contamination you instead ranted until you got to point three then misunderstood my question. No one knows whether it is or isnt sexually transmitted and I didnt even ask about that...I repeat...how can this study be a result of contamination? explain to me how their testing methods are just showing a contaminant?....
Virologystudent, you are not an actual virology student, as even I can understand ERV's argument. The idea that 'XMRV is a contaminant' is not disproven or even attacked when you infect monkeys with large doses of XMRV and then detect XMRV as a 'non-contaminant'.
Think about it. Using the 'logic' of your argument, no contaminant could ever be a contaminant. The source of the contaminant would be 'proof' that it is was really not a contaminant.
The circularity of your argument boggles the mind. I take it that you also believe that 'known WPI positives' should be used in XMRV/CFS validation studies?
@Virologystudent
The research you referenced has to do with monkeys that were infected with XMRV that was grown in the lab. So the monkeys were actually infected with XMRV. This has nothing to do with the Mikovits study -- there is no proof that anybody was infected with XMRV as in the monkey study.
Further testing of patients with symptoms have been mostly negative for XMRV infection. The macaque study has nothing to do with ME/CFS -- you can't draw any conclusions at all about the role of XMRV in humans from this study as the presence of XMRV in humans has yet to be shown by replicated studies. Even if you find that XMRV infects humans -- you then have to study how the infection manifests and how the immune system deals with said infection. Then you have to determine whether or not XMRV actually has any connection with ME/CFS. I am not a scientist, I have a few University level biology courses so maybe I have no clue of what I am saying. The study on the macaques has nothing to do with contamination -- if the monkeys were injected with real live cultured XMRV then they were infected with real live XMRV -- this is miles away from the Mikovits study.
So at this point in time, whether or not XMRV can be possibly sexually transmitted is a moot point.
If you are a virology student, what kind of piss poor education are you receiving? Are you one of those people diagnosed with ME/CFS who fancy that they know everything about virology because they know how to type "XMRV" into a google search?
I rather enjoy ERV's rants. BTW, the bastards also sacrificed the control monkeys.
I know this is sad they sacrificed them so soon. They could have at least infected them with arsenic, mercury, Stachybotrys, monkey EBV?, Enteroviruses, Lyme disease, Toxoplasma gondii, and perhaps something like Coccidiodes immitis.
They could have at least tried to get the damn thing to replicate before sacrificing the poor monkeys. :(
Well, they used immunizations and that got it to replicate in a monkey, but why did they stop there?
Well, you always have the option of an heroing and donating your otherwise worthless carcass to science, you repulsive psycho bitch.
Gerwyn and is band of lunatic fringies are now stating ME/CFS is AIDS as suggested by Saint Mikovits herself.
Unless the diagnostic guidelines have changed, AIDS is caused by HIV. How many people of died of AIDS == well in 2009, approximately 1.8 million died of AIDs. How many people died of CFS/ME? The only casualities of real XMRV infection happen to be some poor murdered macaque monkeys -- it wasn't even the virus that killed them.
What will it take for people to accept the truth.
An actual treatment for CFS that is better than placebo. So far they don't have one. Hyperventilating about XMRV is only going to slow down the process of finding the real cause and real treatments.
hello
people on here seem obsessed with Mikovits! I actually didnt mention Mikovits! Get over it people. I didnt even mention her.....move along now....
in the macaque paper it states "Though some recent reports have suggested XMRV detection using RT-PCR in specimens collected from human patients may be the result of laboratory contamination [10-13], the data generated in our study did not rely on amplification techniques involving PCR.
The techniques used here (IHC and FISH) were not susceptible to contamination errors, our laboratory does not work with rodent tissues and while tissue collections from each animal were done at different times, embedding and slides preparation were processed as a batch"
why would they bother stating this then if they were not worried about contamination in their testing products...isnt that one of the issues debated in relation to the Lombardi and Lo papers?
Therefore it would appear this latest paper is interesting in the fact they are finding it in certain tissues, therefore it cant just all be contamination as Erv stated. I belive she phrased it xmrv=contamination...kinda sweeping statement there really. I have no idea who these other people you mention from forums are and I was talking XRMV in general not in any particular disease. I think people around here need to calm down...I guess Erv understands things better if its littered with childish swear words or speaking like a child in Lolspeak
Also its totally obvious they were deliberately infected and also there wasnt any particular symptom the point is their test found it....and found it in certain places and their testing wasnt related to contaminated testing products.
its a shame discussion here has to be filtered through a verbal shitstorm...and btw I guess the authors of that paper would love you all to write to them and tell them how wrong they are and how more superior you all are at scince...guess they wasted all those years in science school eh
@virologystudent
You are missing the point. IF you infect monkeys with XMRV, then you would expect to find XMRV. Contamination really isn't an issue here. They used a specific cultured strain of XMRV and if they were finding different strains, then it would be an issue. The point is that Mikovits stated she found XMRV in a large percentage of people with CFS and a small number of healthy controls -- ERV is stating that contamination occurred in the study performed by Mikovits. You can't begin to compare the Macaque study with Mikovits -- two different animals.
By the way, the OP by ERV is about the WPI -- who researches for the WPI -- Mikovits -- which is why people are discussing Mikovits.
Does ERV have to spell it out to you because you seem to be a moron -- XMRV=contamination unless it's not contamination because there is a real documented infection with XMRV as in the macaque study. You should go join the mecfsforums, they would love your brand of crapitude.
@87 The Analyst
Yeah what you say is of course true and perhaps more relevant to the time, but I was asking about his other 'prediction' - not that it is exclusively his or anything:
'Iâm betting that either the work WILL NOT BE REPLICATED, or that some other innocent explanation such as an artifact of lab technique accounting for viral presence will be found. I estimate the odds at 80:20 (4 to 1.)'
My question was - and again this may not be what he meant exactly - but is it possible in science to replicate a study such as the Lombardi one?
I am guessing it will not be - to the complete satisfaction of those who have been told they are 'positive' or who believe they might be 'carriers' of something that has been dangerously speculated upon by those who should know better - you see that patent application or the 'sexually transmitted' rubbish or the lectures that demonstrate how ARVs can erradicate 'XMRV' - all implying (but not specifically saying of course), that 'XMRV' is the cause of their own and my illness?
But is replication at all possible or even necessary in the world of medical science? These 'negative' studies (whatever the heck that means), that are accused by some of being of little consequence because they are not true replications; do they represent the 'norm' - the way in which progress is actually made?
I suspect they are - but 'the much anticipated' Lipkin and BWG studies are hyped as being replications - yet I wonder if they are likely to be in the true sense of the word and if this is really all that important anyway, to the scientific medical community?
I'm guessing the exact replication they want to see means including the part that introduced the contamination.
Surprise, it's Gerwyn on mecfsforums!
LOL, yes, Singh added a safeguard against contamination in the latest "negative study" so it wasn't a "true replication" And she calls herself a scientist? ...the audacity!
@the virologystudent
Let's illustrate with a simple example.
Suppose some scientist likes yoghurt very much. He likes it so much, that's it all over the place in his lab. One day, he contaminates his blood samples with yoghurt and erronously reports that he has found yoghurt in his patients' samples.
ERV recognizes the problems with this study and concludes: 'yoghurt = contamination', while Coffin also states that 'yoghurt is all contamination' in Sciencemag.
Now someone decides to inject monkeys with an enormous dose of yoghurt to see what happens. Using a test, it detects the yoghurt in the monkeys' blood.
Now along comes person at an internet blog that proposes that this finding proves or at least implies that the assertion that 'youghurt is contamination' false.
What would you think of this person?
âReplicationâ in a scientific sense means doing âthe sameâ thing and getting âthe sameâ results. Where âthe sameâ means equivalent within a margin of error. Scientific experiments are not supposed to be like magic spells where unknown and seemingly unrelated things have large effects.
If you reduce the margin of error, by using purer reagents, by using more controls, by using more careful technique, by using more sensitive reagents, by using blinded sample coding, it still counts as a âreplicationâ in science even if the exact steps were not exactly the same. It is actually a better replication than the first test was.
That is how science progresses by doing things better and eliminating sources of error and thereby reducing the margin of error in experiments. If effects go away when the margin of error is reduced, it is likely that the effects were due to error in the first place.
MYRA MACCLUR WAS IN MY OPINION A NUTBAR .She is a researcher the UK. the first to come up with the contamination idea for XMRV .Later she said nothing on God's Earth could persuade me to do more research on CFS; blaming ME CFS sufferers sounds professional? She obviously didnât mean it when The NIH in the USA appointed Myra McClure to review grant applications by the WPI.
Luckily she was found out and ME CFS sufferers in the USA got her removed. Which is very good news. And shows common sense over dubious motives. Lately she has been popping up at psychiatric conferences in the UK to spread her message about XMRV being contamination. A good idea as everyone who has ME in the UK needs to know that researchers here doctors and psychiatrist are working hard to shove ME CFS into the psychiatric dustbin. Maybe they suspect a virus is the cause of ME CFS and are trying to stop the WPI and other organizations from finding out? I agree with virologystudent The WPI spent years formulating its theoryâs which might be or might not be right but the UK Rushed out dubious research from every corner institution or university it could find to destroy the XMRV theory and burry ME CFS . Most of the institutions in the UK have put their trust and funding into the psychiatrists
. Professor McClure was a co-author of the paper published in Plus One in January 2010 titled, âFailure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
Suppose that one group would do an exact replication, following the Lombardi study to the letter, and found nothing (0/0). What would that then prove in the eyes of the loony forums?
Nothing.
It would in fact be the easiest study to ignore. You would then have two studies with the exact same methodology, with different findings. Which finding would you then trust? Of course, the 'Lombardi' scientists: they have been doing this for years and know how to do their own methodology, while it would be a completely 'new' methodology for these other 'replication scientists' to master.
I guess a negative 'true replication study' would only prove that these other people must have done something wrong in trying to replicate the Lombardi methodology.
As an aside, if it were some vast conspiracy as quite a lot of people on the loony forums now seem to 'know', why wouldn't all these conspirators just act like they did an exact replication? I mean, just report that you've done exactly the same as Mikovits and found nothing instead of all these 'unreplication studies'? Why 'bury' this finding with incorrect, unscientific and unprecedented methodology that is really to easy to spot, even by mere patients?
Thanks chaps for the enlightenment, its' kind of what I figured. Had always been a niggle about why no one had 'replicated' and not so much from the point of view of those 'loony forums' as RRM refers to them above - but more from the science angle.
Am supposing then that what we have seen is simply a matter of watching how science operates. Approaching the 'problem' from all possible angles, trying different techniques to discover if 'it' is really there and functioning as has been originally 'proven'.
Totally get your points about contaminated 'XMRV' and the monkeys. Though the mention of possible sexual transmission has inevitably 'proved' to some monkeys a confirmation of their belief. Such a shame.
Though if you believe what you are told, if you have 'tested positive', if you hold a single scientist aloft on a mighty pedestal, let alone a single institution - who incidentally is now reaching out to others I notice - then in the face of all this overwhelming evidence, I think I would go cuckoo too.
I doubt if heads will roll over all this - hopefully reputations might and people will learn. 9,000 votes in the Chase competition! 9,000! Then only, what, 4,000 'tests' were made on individuals blood hmmm... maybe people are not as blinkered as some might like to suppose.
Loony forums and their facebook friends could be the only ones out of the millions affected who really give a damn at this point anyway.
Hard to imagine why anyone would see a psychiatric component in some cases of ME / CFS.
It happens a lot in the UK that patients end up in a psychiatric wards.As an example of several known cases Lynn Gilderdale was put into a psychiatric ward in Guys hospital London she was placed in a windowless room and abused by the staff and other children. This case was reported widely in the UK as Kay assisted her daughter to commit suiside after a long battle with ME CFS made worse by her abusive treatment at the hands of psychiatrists. Lynnâs mother Kay gilderdale has written a book called One Last Goodbye' â Kay Gilderdale's memoir on life with Lynn ...
'One Last Goodbye' â Kay Gilderdale's memoir on life with Lynn. by tonybritton
Most of the media cothered the story in the UK but it has made little difference to the abusive treatment that ME CFS patients have come to expect
http://www.dailymail.co.uk/femail/article-1379005/Kay-Gilderdale-The-de…
'One Last Goodbye'might not be avalible in bookshops or shops in the USA
'It happens a lot in the UK that patients end up in a psychiatric wards' Hmmm...
Whilst no one can doubt the appalling way in which Miss Gilderdale and her mother were treated, or doubt that some patients may indeed end up in 'psychiatric wards', I am reluctant to accept that 'It happens a lot'.
You imply that it happens because patients have been diagnosed with ME/CFS and as a direct result they are signposted to psychiatry.
This is not the case in reality though for everyone is it? It is a portrait that is painted to demonstrate the struggle for a validated recognition of a biological illness with an identifiable cause.
You know people with CFS/ME do have mental health problems too and the two are not mutually exclusive - neither are they in any other long term neurological condition either for that matter.
I totally disagree
I did not say it happens with everyone. I said it happened a lot!
It is very real threat used by psychiatrists to threaten ME CFS patients here in the UK.
Many like LYNN guilder dale are children who are being taken into care http://news.scotsman.com/uk/Children-with-ME-wrongly-taken.2516332.jp
Your argument that ME patients do have other mental health problems too and should not have proper treatment does not make any sense to me
.You could say that because cancer patients or patients with HIV also have a mental illnesses that they should be refused treatment and sent to a psychiatric ward ,Given only psychological therapies or pressurized into therapyâs they donât want. After all HIV in the early days was also seen as hysteria ,Multiple sclerosis was seen as psychological .Psychiatrists have been fighting over sick vulnerable people for years .
Written by JOHN diamond a former psychiatrist
âI am no longer a psychiatrist. I renounce it because I believe cruelty is at the core of the profession (and) I believe that there is something inherent in the profession that tends to bring out any cruelty lurking within. I have long wondered why this profession --- which ought to be so compassionate â has, it seems to me, turned its back on humanityâ. - Dr John Diamond, a founding member of The Royal College of Psychiatrists.
They are indeed signposted to psychiatry.I was also trying to explain that ME is being treated in a way BY psychiatrists and doctors that would cause a lot of protest if was treated in the same way or HIV or cancer.
#107- "Hard to imagine why anyone would see a psychiatric component in some cases of ME / CFS."
This is one of either the laziest and/or most ignorant red herrings that get pulled out again and again in the discussion on CFS. As has been stated too many times to count, the issue is not whether some individuals with ME/CFS have a co-morbid psychiatric condition, as can be the case with anyone suffering from any organic disease process, the issue is whether CFS is a primary behavorial disorder as suggested by what is known in the patient community as the 'psych lobby' vs. CFS being an organic disease process as put forth by CFS patients and biomedical CFS researchers.
The issue is quite significant and absolutely not a manifestation of 'Cartesian dualism', since the behavorial model of CFS posits that CFS has no underlying pathophysiology whatsoever but rather is characterized by an individual having 'abnormal illness beliefs', ie the belief that one has an organic disease as opposed to the pre-assumed behavorial disorder as suggested by the phrenologist- err astrologist- err psychiatrist, please excuse me, with this proposed 'abnormal illness belief' being accompanied by a phobic avoidance of exercise and which should be entirely reversable by talk therapy and increased exercise.
The biomedical model for CFS puts forth that there is absolutely an underlying pathophysiological abnormality/abnormalities which is causing the patient to be ill and which no amount of talk therapy and/or graded exercise could even hope to cure, with biomedical research and treatments being desperately needed instead. The two models are as different as the heliocentric and geocentric models of the universe yet still get compared in posts like the one above in a similar fashion to someone comparing the heliocentric vs. geocentric universe as 'well both of them involve planetary bodies revolving around a central mass so they're really both the same thing, innit'?
Jack, if it happens once, it is too much.
Reading the literature, there are many CFS researchers and clinicians who do subscribe to a large psychogenic component in CFS. If you look carefully at their research, you can see how that bias has colored their interpretation of their own data.
That XMRV is almost certainly a contaminant has nothing to do with CFS being a real disorder caused by pathophysiology and not psychogenic.
Thanks chaps.
My point was 'It happens a lot in the UK that patients end up in a psychiatric wards'.
The concern you have with the prevalence of psycho-research in this field is a shared one. The dominance of psychiatrists and the history of beliefs that CFS/ME is a mental illness - are a given.
Personally, I have been assessed repeatedly for mental health issues and on occasion warranted such intervention as a direct result of trying to cope with a misunderstood and inapropriately treated condition.
Yes it necessitated assessment and yes there was a time when I could easily have been admitted on said 'psychiatric ward' but for mental health issues and not ever for CFS/ME - these were recognised as two distinct things.
That it does happen as a result of misplaced beliefs by the greater prevalence of psychiatric medical professionals in the field, is again something I do not dispute, as a generalisation.
However, misdiagnosis of primary cause is not something confined to CFS/ME patients. And psychology and mental health do indeed play a role in any and all long term neurological conditions.
Am I happy when I see 'research' conducted by 'psychiatrists' into a physiological disease, or to hear that inflammation within the brain may be responsible for associated psychiatric disorders like depression - at a time when inflammation in general is being debated as a consequence of neurological conditions like my own? No - it makes me uncomfortable.
But it is in this respect I think necessary, and any research into my illness is on the whole welcomed. I do not share the belief that something performed in this respect by a 'psychiatrist' rather than a physiologist is something to be condemned.
The balance between psychological and physiological research and illness management, has been out of kilter for a long time and this balance does, and I think is, being redressed.
The shrinks have had their chance and you know who I 'blame' for giving over the field to 'them'? The biomedical lot and physiologists in general. They dropped the ball big-time - but are they 'blamed'? No. We have to keep them sweet. Funny old world.
No Jack, âblamingâ anyone is counterproductive. No one (except me ;) has the correct answer to what causes CFS. Everyone who is working on the âwrongâ causation hypothesis is to âblameâ.
If you âblameâ honest scientists for making honest mistakes, then you drive them away from the most difficult fields, exactly the fields where good science and out-of-the-box thinking is needed. Some of those hypotheses will be wrong, but the only way to test to see if they are wrong is to bring them up and then test them which requires research funding.
This is the only way that science progresses, people have ideas, they test ideas and then write them up, other people look at them and have more ideas.
After all HIV in the early days was also seen as hysteria ,Multiple sclerosis was seen as psychological
This ill-informed, easily-refuted piece of bullshit has become such an article of faith among the whackos that I'm tired of arguing with it. Suffice to link to the Bullshit Bullshit Bullshit song.
This is one of either the laziest and/or most ignorant red herrings that get pulled out again and again in the discussion on CFS.
I plead guilty to laziness. Always willing to become better-informed.
My target was T gardener's comment @104, in which he or she emerged into lucidity just long enough to gloat about successfully lobbying to exclude a well-regarded virologist from a research-grant panel. The lobbying was retaliation for that virologist's role in showing that XMRV research is an utter waste of money. All this in the background of complaining that CFS research should consume more public money and the careers of more researchers.
This did not strike me as particularly rational.
@116 I quite agree. Hence 'blame' was inside quote marks :)
Personally, I don't care who does the research, just so long as it is done objectively and focuses now on physiological factors - I think the psychological investigations have predominated for long enough, don't you?
I don't view the research to date as a wasted effort. I think to some extent it was necessary, but it should have been accompanied by physiological investigation as well and to a greater extent than it was.
What I think is important is to recognise that much of this 'blame' is directed at state funded research, though I am not able to confirm to what extent scientific research into my condition was or is in whole or in part state funded.
I mean physiological research has occurred over the years, but the impression and, I think it safe to say, the balance in terms of state funding, has predominantly been towards psychological study.
But outside of state funding, I think perhaps the situation was different - although not many have been or indeed perhaps are - all that interested in CFS/ME. Of course this might now have changed for good - with the arrival of 'XMRV' - and for that at least, I am grateful.
'Blame' is cool. It gives a direction to one's anger and frustration. Though I am not always sure any of this 'blame' is a) warranted - for the reasons you expressed above, or, b) directed to the 'right' place, and c) actually achieves anything in terms of change.
And 'blaming' individuals and not the research itself is also highly counterproductive and wrong - similarly the reverse is true: elevating researchers and all that they do because of what they have purportedly achieved.
Nothing is personal it is science, yes?
I don't 'blame' anyone else other than myself for at times not being able to better cope with it all ;)
Why is Myra McClure publishing her XMRV study in this journal with no impact factor too?
No evidence of XMRV or MuLV sequences in prostate cancer, diffuse large cell B cell lymphoma or the UK blood donor population
http://www.hindawi.com/journals/av/aip/782353/
I wondered that too Smurfette.
'Noe evidence of XMRV or MuLV sequences in... the UK blood donor population.'
A rather sweeping claim for a lowly Journal - perhaps as ERV has before said - the quality of the research does not support the claim?
Also McClure only 'reviewed' the research prior to publication and was not a part of it - I believe.
Smurfette, it is the nth negative study. Why waste high impact journal space with another negative study?
@Jack
McClure was part of that study. She is also a 'guest editor' for that journal (they're doing a special on XMRV).
@daedalus2u
Word has it that the next negative study (the one by Jay Levy and Daniel Peterson) will be published shortly in Science Magazine.
RPM, yes, but Science has the obligation to publish negative studies because they published the first positive study.
Sadly (and very OT), the Journal of Personality and Social Psychology is not aware of that obligation.
I came across this from another source. Please note, I do not claim to know whether XMRV-related retroviruses cause human disease. I have not stated this here or elsewhere. The evidence is against an XMRV association right now, but I found this bit of history interesting.
While reading a book recently, I came across an anecdote so similar to the current XMRV debate and disagreements, that I felt compelled to type it out:
In the book Plague Time: The New Germ Theory of Disease (Anchor, 2002, see page xvii), the author Paul W. Ewald talks about the nasty debates that took place, just over 10 years ago, when researchers at Vanderbilt University discovered the bacterium Chlamydia pneumoniae in multiple sclerosis patients.
Correction: I do think XMRV-related retroviruses cause human disease. I meant to say that the evidence is against XMRV/CFS.
@CA
Finding one 'suprise success story' (or two) doesn't really mean much. Sure, a few scientists have been right 'against the odds', but there is actually a very, very, very strong correlation between being perceived as wrong by your scientific peers and actually being wrong.
Science are asking for a retraction...
http://online.wsj.com/article/SB100014240527023037453045763558522128871…
I'm with Herr Doktor. There's little middle ground with MEtards, it's either bizarre conspiracies, or "I'M NOT CRAZY I'M NOT ONE OF THOSE NUTS!" and the simultaneous persistent denial of any somatisation and slandering of people with mental illness. See also the morgies, fibro, MCS, going all the way back to neurasthenia.
I've got a cure, a teaspoon of Obecalp every day, and a slap around the face.
ANALyst - you'll find that your 'chronic disease support site' ends up 100% populated by your ilk. As a sufferer of an actual physical neurological condition, and autoimmune disorders like crohns and others, I only go to disease specific fora now. Every other valuable resource eventually gets taken over by cfs/me/morgellons/chronic lyme/fibro 'patients' telling people with cancer, AIDS, crohns and UC, MS and many other serious illnesses how 'lucky' they are that they 'only' have those problems, and not the psychogenic fad of the week.
@ Mike
Thanks for the heads-up. Cat among pigeons time again then.
Dr Mikovits I see, says retraction is 'premature' hmm..
Looks like Levy on the 2 June?
Watch this space then I suppose...
I understand what it is like to be ill with other conditions as my brother has MS or multiple sclerosis and there is also some Autism in my mumâs family and ADHD as well. These illnesses are not treated in the way that ME CFS is being treated .Also I wish to apologize for being a little to eager in trying to point out Myra maclures unfortunate slip up with the nothing on God's Earth statement .but I felt it was being a little unfair on Malcovits to keep attacking her and thought this was also not about science. it far easier working with mainstream ideas while watching someone else dodge bullets in the firing line .
Myra McClure has a lot of friends in high places like Simon wessely who works in Camelford England on water and poisonings hopfully I have that right you may have too check iti mmay have it wrong. He also worked on Gulf war syndrome helping the government in the 1990s so she does not lack support in the scientific world . .Again I apologies everyone has their own views which have to be respected.
I was also not attacking Mental illness OR other conditions Maybe mALCOVITS is wrong about this and is doing reserch for the wrong resons. but i would like to find out some answers to ME CFS.I hope i have not ofended anyone
I do find that people with emerging illnesses and not respected diseases (kind of the same thing) are the ones that are most likely to seek support.
People with AIDS have treatment, and they are generally given more credibility by doctors and their family. Dr. Nancy Klimas (an AIDS and ME/CFS doctor) has publicly stated that her AIDS patients have a much better quality of life than her ME/CFS patients. She said if she had to have one of the diseases, she would definitely choose AIDS. A pretty bold statement from a doctor that works with both illnesses.
I am in no way trying to discount AIDS patients. What I am trying to say is that they have treatment and respect and because of that, are generally in a better place.
I don't think the same thing could be said for MS. While I am no MS expert, it seems that the treatments are generally poor. I do think they generally have more respect from their family than a sufferer of ME/CFS, but I understand that family support is more likely to fall apart with any illness.
However, I do believe those with MS are more likely to seek support sites in general than many other chronic illnesses.
In terms of Morgellon's, it looks like an emerging disease to me, and since science can't find the cause (just like these other chronic illnesses) yet or identify what the characteristic fibers, they are all called delusional.
Quite frankly our audience will have a lot to do with who we cater to and marketing to as well.
There is somebody else with a chronic illness support site, and he subliminally tries to convince people with MS that they really have chronic Lyme. I do not think this individual is intentionally trying to hurt people, but I do think he is a bit deluded if you ask me.
I personally think many (if not most or all) patients with chronic Lyme also have ME/CFS, and I have had this opinion before XMRV even appeared and before I heard it from anyone else. In fact, if I were to share my observations in a reasonable manner, people will get angry pr even say things like ME/CFS is not a real (or a trashcan) diagnosis. While I have openly shared my opinion, I don't try to push things upon anyone else or create subliminal messages.
I do think perhaps many cases of PLS could ME/CFS, but the PLS diagnosis is so vague and there is really no science to support such a diagnosis right now. It's a label that hasn't truly been researched.
I think it is fair to say that Lyme is famous for triggering the onset of other neurological diseases, and I don't see why ME/CFS couldn't make that list. I also think there is a lack of an antibody response when acquiring ME/CFS or the antibody response becomes primarily IgM. Unfortunately, science is excluding patients with such an antibody pattern in patients with chronic complaints is often excluded by researchers, even if their ELISA and Western Blot is positive through mainstream labs. I think it will make the list. I think it will be just a matter of time. I think the reasoning is that if you don't have a positive IgG response and have been sick for a long time, you must have a false positive. At the same time, these people with so-called false positives may or may not have positive antibodies to the known cross-reactive infections.
I can go on why people may be missed with two-tiered testing or test methods in general (e.g. seronegative Lyme arthritis), but I'll stop here.
Well shit and fan spring to mind today folks.
WPI respond to 'Science' concerns:
http://www.wpinstitute.org/news/docs/FinalreplytoScienceWPI.pdf
30th May 2011
http://www.wpinstitute.org/news/docs/WPI_pressrel_053111.pdf
31st May 2011
And here is the Levy piece ahead of the official publication on the 2 June then:
http://www.eurekalert.org/pub_releases/2011-05/uoc--mve052711.php
@Censored Analyst stated
"In terms of Morgellon's, it looks like an emerging disease to me, and since science can't find the cause (just like these other chronic illnesses) yet or identify what the characteristic fibers, they are all called delusional."
Are you serious, you can't call something an emerging disease when up to this point of time there has not been one single verified case of Morgellon's syndrome.
FFS, use some critical thinking, instead of repeating the pseudoscientific rantings that you find on the internet. I could make up a disease, use the internet and a few press releases to get people to take notice and then claim something is an emerging disease too. This is not science, it's make belief.
Thanks for your opinion. In terms of Morgellon's I am not basing my beliefs on the lack of mainstream recognition of the syndrome at this point. Non-specific dermal inflammation - what exactly is it? And besides that, there is a hell of a lot more than a skin disease going on.
So if current science doesn't answer my questions, what am I supposed to do. I form an opinion. Perhaps I will be wrong, but all the evidence you can find does not prove anything.
If you look at history, jumping on the "mass hysteria" bandwagon wasn't a wise choice.
Perhaps I am wrong. Perhaps it is a case of mass hysteria this time, but with the limited amount of information, it's too early to tell from my perspective. When the evidence isn't strong, I do not need to sway whatever the way the wind blows. My opinion can shift, but I have not seen any strong evidence against the Morgellon's Syndome yet. Limiting the research to the skin is what bugs me when that is just one symptom.
And if you look at the post from Respectful Insolence, the title is:
That is not the title that a true skeptic would make.
At Science Blogs, the title was accurate at reflected what the study authors said:
I don't want to turn this into a Morgellon's discussion, but my point is, just because you think different or have a different opinion than me doesn't mean that I am not thinking critically. It means we have a difference in opinion.
I think it's safe to say, based on The Analyst/Censored Analyst's posting track record, that said "difference(s) in opinion" can be reliably traced to general scientific ignorance as well as questionable logical skills.
Just because you have a "difference in opinion" than that of the bulk of the medical research community doesn't mean you're thinking more critically than the medical research community.
You might be right, but I think that statement could be said in reverse as well.
I am sure they are thinking critically, but do they really think they can draw such a strong conclusion from a single study? And to be quite honest, they didn't even draw such a strong conclusion. The study was misinterpreted on almost all outlets.
If you look at history, jumping on the "mass hysteria" bandwagon wasn't a wise choice.
Why not?
Upstream we had T gardener telling us that "HIV in the early days was also seen as hysteria"... apparently there were all these doctors seeing patients with Karposi's sarcoma and pneumocystis pneumonia and immonuodeficiency, and diagnosing these cases as merely hysterical pneumonia and hysterical death. And "Multiple sclerosis was seen as psychological". Really, I have to ask in passing how people come up with such transparent lies. Do they make this bullshit by themselves? Do they read it on websites and believe it uncritically without a moment's thought? I don't know which alternative is scarier.
But anyway, if you are appealing to history because there are numerous precedents of diseases that were initially ascribed to mass hysteria and later (to everyone's embarrassment) turned out to have non-psychological causes, then I have to ask for examples.
How about.... ME?
http://www.ncbi.nlm.nih.gov/pubmed/5411596
Oh yes, it was "mass hysteria" well into the 80s as well.
http://www.associatedcontent.com/article/6199142/neurological_disease_m…
If you don't believe that, call Dr. Peterson and Dr. Cheney and ask them. There is a video on YouTube of Dr. Cheney saying this. dig for it yourself if you're truly interested.
You seem to be the one that is misinformed.
Also pick up the book "And the Band Played On" or "Osler's Web" if you dare.
If you don't believe that, call Dr. Peterson and Dr. Cheney and ask them.
My request was specifically for "diseases that [...] turned out to have non-psychological causes".
Incline Village would be a better example if there were any consensus as to what afflicted its citizens, rather than a long list of negative results (e.g. it wasn't XMRV!), and an equally long list of theories, in which "mass hysteria" is as good as any.
Well there doktor - perhaps you should advance your education and avoid being spoon fed.
What do you need now doktor? Citations and proof of biological abnormalities in ME/CFS.
Well, you can find that yourself, but if you want me to give you somewhere to start, look up to see if a sed rate of 0 is normal. And then if it's not come back with a list of diseases that can cause a sed rate of 0.
And remember doktor - avoid being spoon fed even if this is a challenging task!
Wrong. What the CDC actually concluded was that there were 15 patients who had a bona fide fatigue syndrome, which we now call CFS. It also found that the other 119 cases either resolved in less than a month or had a discernible cause. Oh, and months? CDC didn't even get anything until August 1985, and released their report in May 1987. That's more like years. The other thing that makes me sceptical of the claim is that prior to 2011, it was Lyndonville, not Incline Village, that was supposedly the place that the CDC dismissed as mass hysteria, despite the fact that about half the patients met the CDCs own criteria.
But frankly, all that is irrelevant. You were charged to find an example of why jumping on the "mass hysteria" bandwagon for ME/CFS was a bad choice historically, and all you could come up with was an ME/CFS anecdote. Not only is that circular logic, the story appears to be apocryphal!
Also, I would like to mention that those that suffered the "mass hysteria" in incline village didn't necessarily know of anybody that was ill. It's a small town, there is a small hospital, but there are not many doctors there. I should know this, because I lived there.
So, I think "mass hysteria" is an inaccurate term since people suffering didn't necessarily know what the disease was and didn't anybody else that was suffering. Perhaps "telepathic mass hysteria" would be more appropriate, or would that be pseudoscience doktor. I am not sure.
Dr. David Bell who dealt with the Lyndonville outbreak has made the same points in his most recent lectures. He also tracked the health of his patients for 13 years, and his recent follow-up study that used another cohort of patients is very interesting. There are many many people who claim to be perfectly healthy and recovered, but from being ill so long, they actually developed a false perception of health!
He also had a girl come to him that was delusional. Her boyfriend took her to the doctor because she was having intense grand mal seizures, The girl would tell they doctor, "I don't know why I am here, there is nothing wrong with me. I did not have a seizure. My doctor reassured me that there is nothing wrong with me." She didn't remember having seizures, so she thought her boyfriend was making it up. It turns out that she has a severe case of ME/CFS and a seizure disorder but is not able to accept that she is ill with anything. The medical community made her delusional over the decade or so (if I remember the time frame correctly) when she was seeking help.
I'm sure you never thought the medical community could actually make a person delusional - did you doktor?
What do you need now doktor? Citations and proof of biological abnormalities in ME/CFS.
No; if you know what the non-psychological cause of ME/CFS is, then tell us. You won't just win an argument with someone on the internet; you'll make headlines and win prizes.
Please.
Patients in both Incline Village and Lyndonville were declared to have "mass hysteria".
I did notice that 1984 date may be wrong after posting, but they used that exact term - informally - when communicating with Dr. Cheney and Dr. Peterson. Dr. Cheney stated that the CDC declared mass hysteria at one point. You can find clips of him saying this in the archives. Then all sorts of erroneous labels started flying around.
Don't worry doktor. You are just as knowledgeable as the rest of them. You will not make any headlines or win prizes, but you won't have to be worried about challenging (or being challenged) by your colleagues. You will integrate into the system beautifully, doktor. Nobody will know who you are and you won't be famous (unless you find a way to integrate yourself in the UK government and partner with Wessely), but that's a good thing. It means you are safe.
Censored Analyst, in comment #142 you referred me to a "Yahoo Community Content" article as a source. I hope you are not putting much credence in that article, since it informs us that
The idea that physical illnesses were manifestations of feelings and thoughts started with Charcot in the 1880's.
This is the same Charcot who recognised multiple sclerosis as a *physical* condition, and delineated its physical signs; along with amyotrophic lateral sclerosis, and umpteen other diseases. He regarded hysteria as "an organic condition which could be caused by trauma". In short, it would be hard to be more arse-about-face.
You will integrate into the system beautifully, doktor.
If only this were true.
Thanks for pointing that out. It was valuable that you did because when I went back and looked, it links to one of the videos where the CDC calls CFS hysteria.
http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related
Fast-forward to 10:15. It strengthens my argument, but I am sure it will probably strengthen your false beliefs as well. Isn't that ironic!
Fast-forward to 4:00 as well.
I have these lesions. Cool, huh? I used my psychological power to magically generate a fake image.
Blessed with slow internet access, I cannot watch Youtube videos.
Have I mentioned my appreciation for Censored Analyst's willingness to engage, even if we disagree about the value of each other's sources?
You seem to be the one that is misinformed.
INCONCEIVABLE.
The fact that someone from the CDC used the word hysteria wrt the Incline Village cluster does not necessarily mean that the CDC declared CFS to be mass hysteria. Consider the following scenario:
A doctor notices several patients with extreme, persistent fatigue and other symptoms, without any clear cause. The doctor then starts talking about this mysterious disease. A number of patients start coming in complaining of fatigue. It eventually gets reported to the CDC. The CDC investigates, determines that some of the patients do have CFS, but that most of the patients' fatigue is not severe nor persistent and would not have been notable except for the hysteria inadvertently caused by the doctor.
In case my last comment wasn't clear, it is entirely possible, and I think likely (based on the CDC's official response) that it was not CFS itself that was called mass hysteria, but rather the over-diagnosis of what we now call CFS was caused by hysteria. This is not uncommon; for example, university clinics generally see a large uptick in visits immediately following a case of bacterial meningitis on campus.
CA -
If as you say, science can't find the cause, and patients believe their itch to be from parasites, then that is delusional. How do they know it's parasites if science can't find the cause? How do they know it's parasites if they haven't found the parasite? Keep in mind that delusional parasitosis doesn't necessarily mean that the itch is delusional, just the attribution to parasites. Although I wouldn't be surprised if some doctors dismissed a real itch caused by something else based on their patients acting crazy from misinterpretation of their itch.
Morgellon's was popularized by a certain quack in SF who often prescribes antipsychotics to relieve itching along with the antibiotics. I suspect this makes it easier to get patients to take antipsychotics under the premise that the prescriptions are for something other than delusions.
I don't think the informed patients even claim it to be a parasite. They are commonly described as fibers, not parasites, but apparently the lesions hurt a lot (as if it were like some type of parasite).
If the fiber is inorganic and not of biological nature, and we are dealing with a weird 21st century infection, it's no wonder that scientists are confused. It's not their fault. Their training is in biology.
Yes, I read the study and know they found different types of fibers, but the so-called "identification" of certain fibers just left me with more questions.
No, the fibers do not appear to be a parasite, but this was already know.
So perhaps "delusional parisitosis" is the wrong word as well since doctors and patients are not normally making these claims.
If they want to call it delusional, they need a new label.
"Delusional fiberosis"? Nah, that sounds too much like fibrosis.
"Delusional I don't claim to know what the hell this is"? Maybe that's more accurate.
(Missed this reply earlier.) Okay, thanks. The concept of space as a limiting factor didn't really occur to me for the Internet.
I can see some similarities b/t the me/cfs struggle and the book And the Band Played On. But these similarities are not exclusive to me/cfs, lots of diseases are underfunded, with no resources. BUT linking xmrv to ATBPO is wrong. (IMHO)
I remember reading a periodical about men coming to the ER, with devestating symptoms, dead before you could get them admitted.. A short time later I saw my 1st patient. This was in 79. I say this to share that I was part of the medical/science/healthcare back then. Once HIV was found, every lab could find it..it didn't take a secret formula, cooked at a specific temp, using a magic assay..EVERYBODY looking, could find it..so science/medicine was on board and fought right beside the people suffering.
Obviously this is completely different for xmrv.
I will have to read the other book suggested....
@PatchUp,131
"I'm with Herr Doktor. There's little middle ground with MEtards, it's either bizarre conspiracies, or "I'M NOT CRAZY I'M NOT ONE OF THOSE NUTS!" and the simultaneous persistent denial of any somatisation and slandering of people with mental illness. See also the morgies, fibro, MCS, going all the way back to neurasthenia."
Do I need to provide any further evidence that there is a tendency in people to psychologize chronicly ill patients, if current medical knowledge can't explain the illness as organic? And that this tendency is present in humans that participate in scientific discourses?
I'd say you single-handedly burned down the argument of Herr Doktor Bimler.
With regards to the current medical knowledge: You are not up to date, look into the work of Kathleen and Alan Light and tell me how the results of their studies can be explained by "somatisation". I very much doubt that ME is that strong poster child for the existence of "somatoform disorders" that you seem to make out of it. And may I suggest you question your conviction with regards to the dichotomy that all illnesses currently not explained by a organic process must therefore be somatoform â or whether they just could be currently not explained by a organic process.
@herr doktor bimler,147
"No; if you know what the non-psychological cause of ME/CFS is, then tell us. You won't just win an argument with someone on the internet; you'll make headlines and win prizes."
That reminds me of those who want atheists to prove that god does not exist.
I have a better idea: Why don't you provide evidence that there is a psychological cause of ME/CFS.
I am sure your sampling of a dozen or more of the most desperate and vocal patients you find on the internet is representative of the around 0.5% of the population that are afflicted by that disease. And your remote diagnosis of psychological problem in these dozen people surely rules out that there is any organic disease process going on.
I fully understand that you are skeptical to the shit that Mouseovits produced. But to reiterate what others have said to the same effect: I think you are skeptical when it goes agains your bias (XMRV), but not skeptical when it confirms your bias (psychological causes of ME/CFS). I'd call that pseudo-skepticism â but what do I know.
BTW: I think the people who you use as a proof for the psychological cause of ME/CFS have been denied both proper care and recognition of the reality of their disease for decades. They had to experience over and over again that they are helplessly at the mercy of people with authority who want to prove that these patients don't have an organic disease. If you have some knowledge about the human mind, you may ask yourself: What can such an experiment do to a person?
@herr doktor bimler,141
"Upstream we had T gardener telling us that "HIV in the early days was also seen as hysteria"... apparently there were all these doctors seeing patients with Karposi's sarcoma and pneumocystis pneumonia and immonuodeficiency, and diagnosing these cases as merely hysterical pneumonia and hysterical death. And "Multiple sclerosis was seen as psychological". Really, I have to ask in passing how people come up with such transparent lies. Do they make this bullshit by themselves? Do they read it on websites and believe it uncritically without a moment's thought? I don't know which alternative is scarier."
Of course there were some specialists treating all the AIDS associated cancers and infections â they were kind of hard to deny, I'd say. But do you honestly deny that a vocal proportion of the public with the help of a few doctors painted AIDS as some kind of gay lifestyle disease, while the position of the majority of the medical profession could be described as "indifferent" at best? Why do you think ACT UP has been necessary? Yeah, HIV/AIDS patients were treated with the openest minds and the biggest hearts by everybody including the NIH back then in the eighties. After all, the gays brought this disease onto themselves with their "lifestyle".
Kind of like the "Yuppie flu", where people seek too much stress and can't handle it anymore. The media run amok with this while Stephen Straus said nothing and kind of nodded (see Osler's Web for reference). The "Yuppie Flu" BS, while never officially acknowledged, has to my knowledge never been refuted by the NIH or CDC and that image is still lingering both in society and the medical profession. And to add injury to insult, in 1989 Stephen Straus tested 28 CFS patients, selected by the first CDC criteria (a crime in itself), found psychiatric illness in 10 and closed the case: ME/CFS is an psychiatric illness. And on that basis the majority of ME/CFS research was done for the last 2 decades (which is slowly changing) and on that basis did the medical profession form an opinion about ME/CFS.
Unfortunately I read about MS as the "malingering disease" some time ago. Alas, I can't remember where it was, so I can't help to pin point its source and contribute to its debunking â it seemed both plausible and credible at the time of reading though.
I need to stop reading this blog. It's going to drive me to drink.
There is nothing trivial about a diagnosis of psychiatric illness. Mental illness can be both deadly and difficult to treat.
That some suffers deny they are mentally ill should surprise no one. Delusions being a symptom, after all.
My only real comment at this point is that if those that believe they have CFS are willing to accept the possibly its a psychiatric issue and treat it as such, they *might* get better.
Otherwise, they are well and truly fucked. And to be honest, I'm not too concerned with the professionally ill.
Oh, and morgellons? The results are in and official. It's all in your head.
http://www.cbsnews.com/8301-204_162-57366384/federal-study-of-morgellon…