German Charit XMRV/ME study results

[parvofighter]

Apologies if this is a duplicate post and if its rumor. I honestly cant tell its in German. I just came across this blog looks like Dec 2nd, 14:52, commenting on whether the huge German hospital Charit in Berlin would be recommending the XMRV test. The German version is here: http://www.symptome.ch/vbboard/chro...-charite-keine-empfehlung-fuer-xmrv-test.html

And the translation by Google is here:
http://translate.google.ca/translat...en-US:official&hs=Gwl&tbo=p&num=100&tbs=qdr:d

"Charite: No recommendation for a XMRV test
Originally Posted by Charite
XMRV beim CFS XMRV in CFS
Kategorie: News - Patient Care

Recently, working from the National Institutes of Health, and Whittemore Peterson Institute, a new retrovirus XMRV as a trigger for CFS patients described in the U.S.. From the Robert Koch Institute, have now also German patients with CFS on XMRV investigated. The preliminary results are different than in the U.S., as in the previously studied XMRV patients can be demonstrated only rarely. Further investigation is underway in cooperation with the U.S. group. At present we can therefore not recommended to be tested for XMRV. But the study from the USA could not yet demonstrated that CFS is caused by XMRV there, because so far it only shows that this virus in patients with CFS is frequently demonstrated.

Another respondent: It was expected! In a large study XMRV in cancer, which has recently (October 2009) was published, the virus hardly (or not) has been demonstrated. (NOTE: I think they're talking about the German prostate ca research here) In the German study, scientists at the Robert Koch Institute and the Charite Hospital (Urology) were involved. Now that short term CFS patients in our hospital (Medical Immunology) have been investigated, is all right, but also points to the current problems.

Since the virus was discovered in 2006 in the U.S., studies in several countries have come to different conclusions. And: In the studies of prostate cancer / XMRV different tests have been used.[/B] The main problem: There is currently no validated test. The tests in the laboratory, the need to cooperate with the WPI, are still under consideration.

In plain language: It must be present as the first validated tests before they can study results are comparable and verifiable results. (MY TRANSLATION: They have to first have a validated XMRV test, before a study can compare apples & apples). "

FYI - about Charit From Wikipedia: http://en.wikipedia.org/wiki/Charité
The Charit - Universittsmedizin Berlin is the medical school for both the Humboldt University and the Free University of Berlin. After the merger with their fourth campus in 2003, the Charit is one of the largest university hospitals in Europe

If I understand correctly, the key message: Were these comparable studies i.e. same definition of ME/CFS patients (eg. Canadian/Fukuda CFS criteria), same tests (i.e. same XMRV assays)? If not, its apples and oranges. Not only does Charit seem to "get" this, in fact they come right out and say "different tests were used" for the prostate XMRV research. It sounds as though they are collaborating with WPI (?and the Cleveland Clinic?) on the CFS work. This may be the optimist in me, but it sounds as though the initial sparse German finding of XMRV in their CFS patients are reinforcing the need to cooperate with the WPI. Good scientists want "clean" answers, and the Charit seem to care about eliminating scientific noise. One other note - haven't a lot of the blogs talked about a 6 month timeframe for a "validated XMRV test? Or maybe the Germans are sufficiently impressed with WPI's work to just hop on their wagon and use WPI's XMRV tests. Time will tell, but at least Charit appears to be quite meticulous in the science they use to declare or refute an XMRV/ME/CFS link.

A housekeeping issue: It's getting a little crowded as we wait for news of replication of WPI's XMRV results. Given that there are over 200 posts and 12,000 views, might I suggest that we have separate threads for discussion of "News of replication of WPI XMRV study?":
1) Discussion of replication of...
2) German Charit XMRV results
3) UK Kerr et al XMRV results
4) ...?

And/or a "Sticky" posting published "Actual XMRVreplication results" when they are available?

 

[kurt]

Translation

This is definitely not a rumor, this test was run at one of the largest universities in Europe, a Medical research center/school sponsored by the Free University of Berlin and Humboldt University. I speak German, here is my translation of the press release (Babelfish translation is a bit rough). Maybe this will make it more clear. Obviously whoever wrote this equated the NCI with its parent, the NIH.

"From the Institute for Medical Immunology (Nov 30, 2009): Recently a workgroup from the NIH and WPI described a new retrovirus XMRV as associated with CFS in US patients. Since then the Robert Koch Institute has tested German patients with CFS for XMRV. The provisional results are different than in the US, as the patients tested so far are rarely infected with XMRV. Further tests are underway in cooperation with the US groups. In the meantime we can not recommend XMRV testing (for CFS). In fact the study from the US does not prove that XMRV causes CFS, only that XMRV is present in CFS patients and has been present for a long time."

http://immunologie.charite.de/news/news/xmrv-beim-cfs/

Also, the post on that German blog discussing a lack of validated tests was referring to the overall lack of validation for the XMRV tests in general. The poster said the international scientific community has produced too many different results from XMRV testing to consider ANY test of XMRV to be fully validated. This casts doubt on all XMRV testing including that by WPI until more research has been conducted.

 

[parvofighter]

Nice to see XMRV scientists dotting their i's

Thanks Kurt for the speedy translation (agree, it's much better than Babel) and for your insights, and Levi for the additional details of the research. Levi, would you be able to post the URL for the study description?

Seems to me the German Charit team are dotting their i's and crossing their t's to ensure XMRV/ME/CFS results are internationally comparable. We want meticulous researchers - this is all good. When the German prostate research first came out, the researchers (as far as I read) made no mention themselves that the discrepancy with US results might have been due to methodological differences (I seem to recall it was Dr Coffin or Dr Silverman who brought that up??). It is indeed gratifying to see the Charit team being so nimble and transparent - this would be a coup for any scientific institution to make history by confirming that ME/CFS is indeed caused by XMRV. There are of course issues of genetic variability of XMRV internationally, but I suspect that will sort itself out in short order.

What an unfamiliar sensation - to read about scientists hungry to do research on ME/CFS! OK, admittedly it's by proxy - they want XMRV and we're just the ugly sister that has to tag along for the ride.

Given what I've read about the notable genetic variability between XMRV found in ME/CFS cohorts by WPI, and the concerns floated on some blogs about WPI false positives thru lab mouse Murine Leukemia Virus contamination, I'm still betting on the WPI's XMRV/ME/CFS horse. (Am I right that Mikovits et al have essentially put the "lab contamination" question to rest on WPI's Q&A site?) And I'm grateful that Charit researchers aren't throwing in the towel at the first hint of disrepancy with WPI results. We want them to use the same science, even if that means WPI has to switch to a new, validated assay.

Also I love Levi's post on how they are forging ahead looking at, "genetic factors of susceptibility and the dysregulation of the host defense system". Cool stuff, like "subgroups of CFS patients", "genetic signatures", "biomarkers"! Be still, my beating heart.

If only their science could rub off quickly on those N.I.C.E. folks in the UK and of course the CDC, still for the most part rooted in their addled psychiatric paradigm. CBT and GET for a neuroimmune disease are so yesterday!

Gute Nacht!

 

[Nina]

Being from Germany myself, the latest announcements of the Charit's results had me more than a little worried. In fact, assuming they were still using the same methods as in the prostate cancer study, I had expected them to find NO XMRV positives. That would have been much easier to dismiss.

They state the positives were "rare". I wonder what rare means? Until we don't know how many samples were even tested and how many of these tested positive, it's hard to conclude anything from this study.

I was extremely relieved to see the way they publizised this, though. What I had not wanted to hear was something along the lines of "Study refutes US-findings of XMRV in CFS patients."

I've spoken to several patients who were examined by the Charit for CFS, and I must say I am not sure about what CFS definition they are using. Personally I had the impression that quite a few people didn't actually have CFS so I wouldn't expect them to come close to the 95% in any case. This again stresses the importance of agreeing and publishing the patient selection criteria and CFS definition applied for the respective studies.

Parvofighter: Please don't be mistaken about the quality of care for CFS patients in Germany, what the Charit does is definitely not representative of the medical establishment in general, we too have but a few doctors who even recognize CFS as a physical disease, let alone offer any kind of (experimental) treatment option. This has GOT to change, regardless of the XMRV outcome.

 

[Smulan]

Further tests are underway in cooperation with the US groups. In the meantime we can not recommend XMRV testing (for CFS).

http://immunologie.charite.de/news/news/xmrv-beim-cfs/

Im glad for the statement above about cooperation with the US groups. It would probably rule out/confirm difference in test methology but still it could be different strings of XMRV in Europe and US?

 

[Smulan]

Judy Mikovits from a intervju october 10.

"We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

"The same percentages are holding up," she said.

http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=10602278

 

[brenda]

Very interesting for me if I can get my head around it. The medical school is just about round the corner from where I live.

 

[jenbooks]

Very confusing--seems so contradictory. For Mikovits to be so certain, and for these results to be so different. I'm glad the tone is respectful, but this does reflect what that scientist told me (that it was not panning out).

 

[Smulan]

If Mikovits is correctly quoted and that they find XMRV in patients from UK its very stange. The only guess I have is that it must be somthing with lab technics...

 

[Christopher]

Very confusing--seems so contradictory. For Mikovits to be so certain, and for these results to be so different. I'm glad the tone is respectful, but this does reflect what that scientist told me (that it was not panning out).

It's entirely too early to make definitive statements for either case. Who is being tested and the testing methodologies themselves can produce drastically different results. Let's just be patient and wait it out

 

[fresh_eyes]

It's interesting that German studies are failing to replicate two completely separate, unrelated US XMRV studies, first the prostate cancer and now this.

I wonder if the German studies are being done by the same lab(s), or if German labs do PCR in some essentially different way.

 

[cold_taste_of_tears]

It's interesting that German studies are failing to replicate two completely separate, unrelated US XMRV studies, first the prostate cancer and now this.

I wonder if the German studies are being done by the same lab(s), or if German labs do PCR in some essentially different way.

RE: German Prostate XMRV study.

With respect, the German XMRV Prostate study did not look at the same cells as they looked at in the USA, hence they didn't replicate the findings.

Regarding the ME/CFS studies not being replicated, we don't know if they used the same techniques as your rightly mentioned, and if the patients they
selected had immune disease. ME/CFS, by definition, has been watered down over decades to describe:

'Chronic Fatigue Syndrome (CFS) is long-term tiredness (fatigue) that does not go away with sleep, or rest, and affects everyday life': Link

There are endless reasons to be tired other than a retrovirus, as any psychiatrist will accuse you of!
The WPI selected people with known neuro/immune disease.

On balance it may have been wiser for the WPI to announce that people with XMRV has been misdiagnosed with ME/CFS.
To save all the counter-claims, and studies not matching their findings.
To their credit, they did call the blood test for XMRV - 'XAND', but I feel they could/should have stated that XMRV causes XAND, and XAND is not ME/CFS.

It would have been a lot simpler for patients, and scientists alike.

 

[fresh_eyes]

Good points, ColdTaste. Of course the cohort criteria are a huge factor in all this. I missed the bit about the Germans actually looking at different cells - do you have a link?

I imagine you're right, that if WPI had kept the "CFS" word out of their findings, things would be easier and more clear cut for them, though patients would have to be classified as XMRV+ rather than XAND at this point, since XMRV itself has not been shown to cause disease.

Unfortunately, this would likely leave many people (who test XMRV-) in the "CFS" ghetto, which you more than most know is an absolute nightmare - so I thank them for bringing us along, as someone said, like XMRV's ugly sister.

It was pointed out somewhere on these forums that a real first replication study should use both the original techniques AND the original samples, which I hadn't realized - so we won't know much until we see a good-faith effort at that, using the WPI samples.

ETA I sent an email to Vincent Racaniello at the virology blog http://www.virology.ws/2009/10/23/xmrv-not-detected-in-german-prostate-cancers/ to see if he could shed some light on this - we'll see if he writes back.

 

[PoetInSF]

Obviously whoever wrote this mistook the NCI for the NIH.

NCI is a part of NIH, I believe. True, NCI would've been more specific, but calling it NIH would not be wrong either.

 

[Smulan]

RE: German Prostate XMRV study.

With respect, the German XMRV Prostate study did not look at the same cells as they looked at in the USA, hence they didn't replicate the findings.

jeeez, first the war and now this... ;^)

 

[cold_taste_of_tears]

I missed the bit about the Germans actually looking at different cells - do you have a link?

Hiya, thanks for your reply it was really good, it would be good if you could contact Vincent Racaniello thanks for that, however I found this. Admittedly it's not what you asked, but I'm trying to remember where I saw the 'cells' comment, possibly it was from Dr Judy. However, he's what Dr Silverman said about the German XMRV study on prostate XMRV....

Q)''What about the recent study by German researchers in the journal Retrovirology that found no link between XMRV and prostate cancer?''

A) ''It is not atypical of science for different groups to get different results. There could be methodological differences. I believe our methods were more sensitive. They may have missed it. Or it could be a different strain. Another interpretation is that the virus is more prevalent in the United States than in Germany.''
Source: Link


I realise we aren't debating prostate XMRV here at all in this thread, and I'm not trying to divert away attention from that - just it's interesting he says 'different strain'.

The German report is on a PDF file, here <---- Maybe some brilliant minds here who know about the XMRV USA study, can compare the methods of testing with the USA study (I don't know the methods) and that may explain why I read somewhere that they looked at different cells. Presumably not white blood cells/lymphocytes? I honestly don't know. Anyway, check out the PDF I just linked to see if it makes sense to you guys regarding the way they tested for XMRV vs the WPI USA study!

 

[fresh_eyes]

It is not atypical of science for different groups to get different results. There could be methodological differences. I believe our methods were more sensitive. They may have missed it. Or it could be a different strain. Another interpretation is that the virus is more prevalent in the United States than in Germany.

Yeah. So the fact that both the failures-to-replicate came from the same country actually makes them seem a bit more questionable in my book - makes it seem more likely to be methodological (locally popular lab methods that differ from those favored in the US), or regional strain differences. I'll be interested to hear what comes in from other countries, especially geographically and culturally distant ones (eg Asia, Africa).

You know, the more I think about this, we would really learn a lot from different labs testing the same samples. I hope that's in the works.

 

[dannybex]

It's entirely too early to make definitive statements for either case.

Which Mikovits seems to be doing quite a bit of. That's worrying, as it could backfire if it doesn't pan out...

 

[Daisymay]

Re: German prostate research - Silverman's comments

Re the germans research on prostate cancer earlier this year, here is Dr Silverman's response in the LA Times - click on the link for the whole article.

So they used different techniques, I remeber hearing someone, cant remeber who saying that the technique they used was n't nearly as sensitive, also something about them looking at the wrong cells, so they weren't testing like with like, so I think all you can conclude is that using their testing methods they didnt' find XMRV, which doesn't mean it isn't there

http://latimesblogs.latimes.com/booster_shots/2009/10/viral-link-to-prostate-tumors-questioned.html

Viral link to prostate tumors questioned
October 15, 2009 | 4:01 pm

Dr. Robert Silverman of the Cleveland Clinic Lerner Research Institute, who originally discovered the virus, noted that the techniques used in Germany to look for the virus "are significantly different from the methods we use.... It is possible that the methods used may have missed detecting XMRV." Other possibilities are that the strain of the virus that predominates in Europe has a slightly different RNA sequence than that in the United States, he said, or simply that XMRV is more prevalent in the U.S. than in Germany.

 

[parvofighter]

Stromal vs tumor cells

Hi Cold,

I found a 2nd hand reference on the prostate research from a recent post:

See Kim's post on the "XMRV + AZT" thread: http://www.forums.aboutmecfs.org/showthread.php?t=1354

However, the initial study identified XMRV-infected cells as stromal cells, rather than carcinoma cells (Urisman et al., 2006), suggesting that XMRV may support prostate cancer development through indirectly promoting abnormal cell growth.