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European replication of xmrv study being funded!!!


Wooohooo!!! ME Research UK and the Irish ME Trust are to replicate the WPI's xmrv study.

Independent confirmation of the relationship between XMRV and ME/CFS in Sweden
Investigators Prof. Jonas Blomberg and Prof. Carl-Gerhard Gottfries

Section of Clinical Virology, Uppsala University Hospital, Uppsala, Sweden; Institution for Neuroscience and Physiology at the Sahlgrenska Academy, Gothenburg University, and Gottfries Clinic, Mlndal, Sweden

ME Research UK and the Irish ME Trust are providing joint funding for this important study.

Background and aims
The discovery of a retroviral link to ME/CFS, reported in the major journal Science in October 2009 (Science 2009; 326: 5301), has the potential to advance the diagnosis and treatment of the illness greatly (see our overview essay XMRV and ME/CFS A stunning find). The major finding was that DNA from the XMRV virus could be detected in the peripheral blood mononuclear cells of over two-thirds of ME/CFS patients samples from the blood bank in the Whittemore Peterson Institute tissue repository, but in less than 4% of healthy control samples. Also, the researchers reported that XMRV proteins were being expressed in blood cells from ME/CFS patients at very high levels compared with controls, and that patient-derived XMRV was infectious and transmissible.

Prof. Jonas Blomberg These findings have caught the attention of the scientific world, but the next steps are equally important. Chief among these is for independent laboratories across the world to attempt the replication of the WPI findings among their own local populations of ME/CFS patients it is sometimes said that replication studies are where the rubber meets the road in science! Since the WPI researchers used samples selected from several regions in the US where outbreaks of CFS had been documented (using patients diagnosed on CDC-1994 criteria and Canadian Clinical criteria 2003), blood samples from patients in other areas or countries might throw up very different results. Will ME/CFS samples from other regions of the US show similar high rates of positivity? And what about European samples?

Prof. Carl-Gerhard Gottfries This replication study is one attempt to answer this question to establish whether XMRV nucleic acid can be found in peripheral blood mononuclear cells, plasma and serum of Swedish patients and controls. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda-defined ME/CFS, 20 fibromyalgia, 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients (defined on the Fukuda 1994 and the Canadian 2003 criteria, similar to patients in the original 2009 report in Science), who will also have functional assessments.

The investigators are well-placed to conduct this confirmation study. Prof. Blomberg is head of the Research Group of Clinical Virology at the University of Uppsala. His research interests include human endogenous retroviruses, the links between endogenous retroviral sequences of the human genome and diseases such as multiple sclerosis and schizophrenia, and the development of real time polymerase chain reactions for common viral infections.

Prof. Carl-Gerhard Gottfries is Professor Emeritus at the Sahlgrenska University Hospital, Mlndal, and founder of the Gottfries Clinic AB which was formed in Vstra Gtaland in 1998 for patients with fibromyalgia and ME/CFS, and which is now situated in Mlndal. The unit has three doctors, nurses and medical secretaries, and it has also conducted basic clinical research, including trials of immunomodulatory therapy for fibromyalgia and CFS.

The results of this important replication study should be available in the Spring/Summer of 2010.

Get your ME Research UK Xmas cards here or/& donate, they need every penny they can get :



Senior Member
Yes this is brilliant!

Yes this is brilliant news and we know which definitions they are using and also FMS and IBS which is excellent.

I hope this will help to validate all these ilnesses and invalidate Wessely and co once and for all!

I've just emailed MERUK to thanks them, it's so exciting.

We so need organisations like MERUK, who we can trust, to try and replicate this research.

Interesting that they didn't use UK researchers.


Senior Member
Swedish Top Guns invent MegaBeacon- works for XMRV

Just found this tidbit on Prof. Blomberg, I believe the lead researcher of the Swedish XMRV replication study. He's been a busy man, not only researching XMRV, but also customizing lab technology to assist in this quest. I understand that PCR assays can be developed very quickly, but this one sounds rather unique. Prof. Blomberg was quoted at genomeweb, "PCR Insider": http://www.genomeweb.com/pcrsample-...probe-approach-target-influenza-b-c?page=show

"A team led by researchers from Sweden's Uppsala University has developed a real-time PCR assay... The researchers, led by Jonas Blomberg of the Department of Medical Sciences at Uppsala University, also developed a new probe to target the highly variable influenza A target sequence. The probe, called MegaBeacon, or MegB, is a "hybrid" between a molecular beacon and a TaqMan probe because it is nuclease-degradable, like a TaqMan probe, but much longer and mismatch-tolerant, like a molecular beacon... The basis of the MegB strategy is to extend the length of the probe to increase its [melting temperature] and to disperse hybridization over a longer nucleotide stretch, encompassing variation in the entire region," Blomberg and colleagues wrote. "As long as there are sufficient perfectly matching sequence regions, the probe will bind."... The researchers add that the increased fault tolerance of MegB "has the potential to improve detection of variable viruses in general and to enable detection of entire virus families, such as Coronaviridae."

PCR Insider spoke to Blomberg recently about the MegaBeacon strategy and its potential uses. An edited version of the interview follows.
...It's the first time that this new principle, the MegaBeacon, is introduced into the literature. It's very flexible. With this design, we can achieve new functionality of TaqMan probes...The TaqMan probes are relatively short generally below 30 nucleotides and you can't make longer ones because then you must introduce a quencher inside the probe and that is difficult from a synthetic point of view. So we wanted to be able to stretch out the probe over a much longer target than was possible with ordinary TaqMan probes...We got this idea that if we make a hairpin out of the TaqMan probe, this way the quencher is next to the fluorophore just like a molecular beacon. But this is much more than a molecular beacon. It's also five-prime nuclease degradable. So it's a combination of TaqMan and a molecular beacon.

In this way, we can have the advantages of both. So there is no limit not a very big limit, anyway on how big it can be. I think you can have 70 or 80 or so nucleotides as a probe. This gives the possibility of evening out mismatches. So the one we have in this paper can tolerate up to 10 mismatches, but with longer probes, and of course depending on the target variability, we probably could have even higher tolerance. And for an ordinary TaqMan probe, it can only handle a few mismatches and then it just dies. ...So it's a very useful strategy if you have variable targets like RNA viruses the orthomyxaviruses being prime examples, and also for retroviruses. We have designed a [xenotropic murine-like retrovirus] system that detects the XMRV envelope gene, which is highly variable that's also with MegaBeacon. And we have done a coronavirus system, but those are not published yet. ...We wanted something much more mismatch-tolerant. And then this idea with the MegaBeacon came up...But we have found it working fine in coronaviruses, where we can detect the whole coronavirus family with this MegaBeacon probe. And also XMRV.

How are you using this assay in practice? Are other labs adopting it?
The XMRV [assay] is brand new and that is only used in my own lab.

Are you looking to commercialize the MegaBeacon work?
We were contemplating a patent this spring, but we could not do it because the doctoral student [working on it] had to finish a thesis. There was simply not enough time to go through the patenting process, so we had to leave that. So now it's out and public.

So basically anyone can use software to design their own MegaBeacon probes?
One can say that, yes. I actually have a special computer program [called Consort] that facilitates this, but that is not published yet, either. We work with that a lot and it helps us very much."

So what might one take from this update?
1) Prof. Blomberg isn't messing around. He's not only doing XMRV research, but trying to leap-frog by creating new, innovative technology
2) This probe can detect entire families of viruses (eg. coronavirus family). But XMRV is also mentioned. Might that mean that a single probe might be able to capture say, both the prostate cancer XMRV virus, and the 99% similar ME/CFS XMRV virus? Might this also capture say, the Russian XMRV virus, and the American one? Something to think about.
3) Prof. Blomberg comments that the XMRV envelope gene is highly variable. Could that be leading to some of the variability in prior prostate cancer XMRV findings (for example the negative German prostate study?)
4) The XMRV assay is brand new. BUT if you have a garage, and a laptop, you MIGHT be able to design your own MegaBeacon probe - if you're so inclined. Seriously though, this openness is GREAT for the XMRV research field. It's kind of like Open Source XMRV technology. Keep in mind that intellectual property fiefdoms brutally slowed down the HIV research race. Whether intentional or inadvertent, Prof. Blomberg's MegaBeacon is now in the public domain.
5) OK, I've done version 1.0 trying to understand this article. Can anyone take us to Version 2.0?:)


Senior Member
I totally read it that way, too. I shouldn't be surprised that my brain is always on the lookout for things pertaining to bacon. :D


Senior Member
so what?

Sorry folks, I'm not smart enough to understand the bacon jokes, or nucleotides etc., anyway, here gioes....

XMRV study at WPI is the most promising we've had to cling onto since we all first found out the hard way about the existence of ME (sorry, don't don't like CFS).

However, it's way short of an explanation. It seems that the stumbling block in establishing a direct link for XMRV-ME ( like HIV/AIDS) is the transmission mechanism.

So why can't the clininical researchers develop a systemmatic approach to understanding ME? Why is it taking so long?

Is anyone being creative in using all the avilable evidence to solve the clinical puzzle? I don't see it.

Maybe we'll have to come up with something ourselves.

I know sweet FA about clinical research, but I'm thinking. Anyone got any ideas to make the thinking systematic instead of random?

Satch :cool:
Sure, Satch. Welcome.

Even if XMRV has significant global replication, there is no proven treatment. There is only the rawest of experiments inside of test tubes. While the XMRV discovery may be scientifically and politically relevant, it is currently not clinically relevant. That is, treatments are likely to be empirical, or as random as the above words.

For an article posted in one of the best and most-respected journals in the world, my words may seem pessimistic. Wait-and-see may be the worst way to discover something, but it's the only tool an XMRV patient has besides getting tested.

A systematic approach to understanding ME is not achieved because it likely has a multitude of causes. These are: genetics, stress and infection. Currently there are no biochemical markers that are unshared with other diseases.

It's taking so long because of what individuals on here state: the system still states that ME is a psychiatric disorder with no underlying pathophysiology. That is obviously a concern, and just blatantly misguided, and there are some people in high places working on that.

Most individuals who do PhD level lab work are too focused in one area to complete the puzzle. But our knowledge of ME/CFS immune pathology is extremely vast, and pretty much every available test has been assayed and documented showing several abnormalities.

I'm not defending the indefensible, the status quo. However, if you read Dr. Nancy Klimas's (probably one of the best clinical laboratory pathologists in the world) published works, she understands why you are having symptoms you are having. But right now, absolutely no MD or PhD can prove to you what causes it, or has any double blind placebo controlled singular treatments for it simply because science has not advanced that far yet.

One would need to attract the best scientists in the world to work on a non-deadly problem--- that most scientists don't believe in--- with virtually no money. Those places are the CDC and NIH, and if XMRV is proven outside of their walls, there will be pressure from within the scientific community and the legislative branch to increase funding. The answer comes down to funding, I suppose.


Senior Member
Clay, Alabama
Yes, but the funding and interest have already changed. We have cancer research folks interested, autism and fibromyalgia folks interested, virus researchers, and now HIV folks.

Blood bank folks are concerned and doing their own studies. XMRV changes everything. CFS is now legitimate and on the map.

A new mantra, "I had CFS when CFS wasn't cool."



Senior Member
Funding issue

Thanks Perovyscus & Tina

Forgive me, I'm just getting up to speed. Had ME for 19 years, but only recently got interested in what's happening out there due to the XMRV stuff. Up to now, it's all been a waste of time, but for some reason this seems like it might be worthwhile.

I'm in the UK, so our nearest equivalent of NIH/CDC (I think) is the NHS.

I agree, money talks, i.e. is needed to attact talent and resources. So if the big pharma's get a sniff that there money in it, then they'll chuck some at it. I don't know whether this happened with HIV/AIDS, maybe. Was that well researched because it was an easier puzzle, or because some sufferers had money, or because the effects were more dramatic, or what?

It can't be approached systematically due to multiple causes? Don't see the logic there, sorry.

Would money alone guarantee an understanding? - this is all I seek, treatment is a bonus at present - I don't think so, I maintain that it has to be approached sytematically, and I don't mean linearly. I don't know how clinical research is undertaken. Maybe clinicians are the wrong people to do it effectively? I imagine it needs a multi-disciplinary team, including commercial business management techniques and skills - does this happen? I work in IT - the last thing you do is let techies develop a system on their own.

As you say, we can't wait for people with no personal or financial interest to do it, as it simply won't happen.

Still thinking.

Satch :cool:
Cleveland, Ohio
How will it pan out?

Thanks Perovyscus & Tina

Maybe clinicians are the wrong people to do it effectively? I imagine it needs a multi-disciplinary team, including commercial business management techniques and skills - does this happen? I work in IT - the last thing you do is let techies develop a system on their own.

As you say, we can't wait for people with no personal or financial interest to do it, as it simply won't happen.

Still thinking.

Satch :cool:
Satch- It looks to me that the whole XMRV-CFS/ME thing came about because of the personal angle: the Whitmores daughter was afflicted with CFS and nothing was being done on a government level to look at infectious causes. We really haven't had clinician-researchers in this, tt has only been clinicians like Cheney and Teitelbaum and lots of other less heralded doctors, going against the professional tide and doing empirical treatment and some small scale clinical studies. The breakthrough seems to be a confluence of techies (Mikovits), clinician researchers (Peterson), the discovery of XMRV at a cancer research center (Cleveland Clinic), the "coincidence" of l-rnase anomolies also observed in CFS and the very personal commitment of family money by the Whitmores.

My bet is that from here, assuming this pans out, there will be a cascade of events. First an upsurge of University research labs looking at it because they will finally be legitimized instead of stigmatized for researching CFS. Hard science research into an infectious cause of CFS was shut down in the 90's by many Universities because it wasn't a "real" condition. A real virus and a risk to public health (blood supply) changes a lot of attitudes and opens up funding as well. There will be a lot of government action because of blood supply concerns, and governments will be forced to see it as a real public health concern. Then big Pharma will weigh in because of they can apply what they've learned from HIV to tailoring antiretrovirals to XMRV and they can smell the insurance bucks in the air. Big Pharma has already discovered the gold-mine of promising, but not really delivering, fibromyalgia relief-- Cymbalta, Lyrica, Savella, neurontin, etc. And now a whole untapped market is possible to which they previously had nothing to sell. Still, I don't see the commercial model as driving the core research as you might. The fundamental science still has to be done by people who have no financial interest and aren't biased towards particular outcome, and from clinicians desperate to help patients suffering before their eyes. Without this we would have had little HIV treatment as commercial models can't support wandering the many blind alleys that cutting edge development always requires.


Senior Member
Thanks JimK, I like what you've said.

Hope I haven't offended the research community - we are at their/your mercy, and the work being done is fantastic. I'm just frustrated, and used to sorting problems out systematically and quickly (my arse gets kicked hard if I don't, or my kids don't eat).

has this thread gone the wrong way now? oops!

Satch:In bed:

PS closest I've had to brain fog is hypoglycaemia, which I get as a reaction to sugar - is it similar? Does it mean I don't have ME if I don't fog?


Senior Member
I remember when the early HIV panic was developing. When it was found to be easily sexually transmitted and to cause death, there were many, many horror stories projecting what this would cost society in health care. I think these two factors, cost to the society and ease of transmission, were important factors that influenced the response to HIV. These two are missing from CFS/ME. The cost to society of what those disabled by CFS would have contributed has largely been ignored and we don't have Karposi's Sarcoma to show how ugly this illness is.