German study finds xmrv

[bullybeef]

Hi I don't know if you mean 4 years, or the Dr Coffin guess of XMRV being around at '40' years? But yes XMRV is in Europe for sure or people with ME CFS would't keep testing positive for it who were born here and have never left Europe.

XMRV doesn't exist in the UK according to Wessely & McClure - they say. ''If it was there, we would have found it''. And the other classic: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK. Egg on face much for the Imperial College London I think. I wonder how stupid they will look in the next few months!!!! Did they realliy think no one else would bother looking at XMRV? :victory:

I was just thinking that. I wonder how many other studies there are currently underway that aren't specifically looking at the ME/XMRV link?

Did anyone know of this study?

The four year question was just because they began this study in 2006 (imagine how hard it has been for them to keep quiet for all this time). It is a wet fish in the face for McClure and Wessely. I thought Coffin suggested 50 years, didn't he?

 

[DysautonomiaXMRV]

With a 3-4% general rate, Kati, you probably have had many exposures as a nurse.

This is interesting, as ME CFS high rates of disease in children/teens then nurses and teachers.

All involve communicating in areas where exposure to viruses would be far greater than other professions/environments
due to the close contact of large groups of people, and in hospital and schools people who carry more infections.

The original 'outbreaks' of ME CFS involved children and nurses in hospitals, all told they were suffering from mass hysteria
rather than infections triggering ME CFS.

 

[Advocate]

Organ or bone marrow transplantation

It's Group 3 that interests me.

From group 3, a total of 161 BAL and tracheal secretion samples were collected from patients with severe RTI and immunosuppression as a result of solid organ or bone marrow transplantation.

Group 3 had by far the highest frequency of XMRV.

For group 3, XMRV-specific sequences were detected at a frequency of 9.9%

Here is Question #3 (lucky choice of number?) in our XMRV+ Positive Survey:

7. I have received a blood transfusion or tissue transplant:
Yes
No

I think Kim has already posted a graph based on early answers to Question #3. It's here on the XMRV+ thread, post #35.

Advocate

 

[bullybeef]

I am rubbish at percentages; what is the percentage of 22/329??

 

[Kati]

6.6% is the number!

 

[_Kim_]

It's Group 3 that interests me.


Group 3 had by far the highest frequency of XMRV.



Here is Question #3 (lucky choice of number?) in our XMRV+ Positive Survey:


I think Kim has already posted a graph based on early answers to Question #3. It's here on the XMRV+ thread, post #35.

Advocate

Here are the current results for that question. 4 out of 14 have received a blood transfusion or tissue transplant.

 

[Mark]

Wow! Just wow!

:victory::victory::victory:

This may take some time to sink in...

I've always been confident in the truth of the WPI findings, pretty much since I first saw the news and found Phoenix Rising through a Google Search. But I don't do 100% confidence very naturally, and what I've been wrestling with the past few months especially is the feeling that the (attempted) suppression of these findings by Wessely et al might well imply that this information would never be verified and reach the public domain.

But this result simply obliterates the 3 studies that failed to find XMRV at all, absolutely vindicates the position of the majority of members of this forum, and leaves Wessely et al without a leg to stand on. It seems to me that, because of the way this has all played out, and what they have been saying and doing for the last few months, this must surely spell the beginning of the end for them.

I guess we all knew this day was coming, but in the waiting, and the confusion, we have been through a turbulent time together. I'm so grateful to you all that I've had such a wonderful group of people to go through all this with.

What else might it mean? Wessely out? Myhill rehabilitated? Gerwyn for president? Oh yes the times are most definitely a-changin'!

Turning now to some of the quite natural fears and doubts...which centre on the questions of transmissibility and infection and what that might mean for us. I've thought about that a lot over past months, but I haven't posted those thoughts because it didn't seem like it would be productive or helpful at the time. But since it seems that a lot of people are worrying about those things, here are my conclusions:

- At around 4% of the population, there are surely far too many of us for there to be any hope of containing XMRV. It's simply not feasible to contain the infection globally, so any fears about public perception etc are in my view unwarranted. Almost everybody will know somebody with XMRV. If it's right that retroviruses drive human evolution and eventually become absorbed into the human genome, we are just the pioneers in all this.

- Coffin, WPI et al always said there probably have to be cofactors for XMRV -> CFS, so that part of the analysis of the German results is nothing new. At the risk of sounding like a broken record, can I please mention mold once again? Mold. And Slayadragon.

- There will be a lot more detail to be fleshed out, and until we've all crunched through the numbers and evidence again together, and reached a group conclusion on the likely theory to explain those co-factors etc, personally I want to leave all options open. But for the record I'll restate my long-standing belief: that XMRV (and related retroviral strains) underlies most - and probably all - ideopathic neuro-immune conditions: IBS, GWI, FM, MS, etc etc etc. That it is a spectrum condition and that immunological cofactors, both genetic and environmental, and the specific site of the DNA corruption, all come into play to determine severity of infection. And that this breakthrough is about far more than the ME/CFS community, and that this long-suffering community is now right at centre stage in medical research. The world will soon know the cost to humanity of having dismissed our plight as "all in our minds"...

Also worth noting that the Phoenix Rising forum remains right at the heart of this huge medical breakthrough, and that once the research vindicates what we have been saying here, this community is going to get a heck of a lot of attention...

Finally, I want to encourage everyone to remain positive about the news and about the future, despite some of the extremely scary aspects of XMRV. I think those people with the "I hope I have a retrovirus!" signs summed it up best. Anything is better than than the limbo and lack of recognition we have all endured for decades, and knowing this news immediately gives us the potential for effective biomedical treatments. The process is still going to be slower than we would like, we have seen that proven already, but I honestly believe the corner has been turned and we have an enormous amount to feel positive about. We are all still exactly where we are, and we should focus now on the very real hope for treatments to reverse our decline, rather than on the potential future problems that may - only may - affect the most seriously ill. Even those people can hope for treatments before those problems develop, and one thing we should campaign for is that the most seriously ill should be treated and helped first, regardless of financial circumstances; if we've learned nothing else from our experience, to relay to humanity, it's that, for all our sakes, we should never leave anyone behind. There is every reason to feel positive about our future, and it remains the case that fear is an unproductive lie.

Finally finally: I'll repeat once again my desperate plea for some rationality and humanity in the reaction of the international medical research community to XMRV. It is absolutely imperative, from the point of view of getting the fastest possible understanding of the significance of XMRV, that a wide range of ideopathic neuro-immune conditions are tested for XMRV. What percentage of MS sufferers have XMRV? What percentage of people with IBS? Or GWI? Or autism? Or anything else that remains unexplained? It would be so quick and easy for researchers around the world to send a small number of suitable samples from the blood of patients with each of these conditions to the world leaders in XMRV research - the WPI - and pay them to reveal which other of these conditions are XMRV-related. The quality and precision of these first studies is not nearly as important as getting this information as quickly as possible. Just 10 samples from each condition would reveal so much information about the overall pattern. To fail to do so now, after this confirmation of the prevalence of XMRV world-wide by a second lab, and the association with immune-compromised individuals, would be quite unforgivable. Time is passing, people are suffering and dying, and it's time now for the scientific community to get real about this and act in a logical and utilitarian way and conduct the appropriate tests. I am getting a bit tired of making this point, but perhaps the German study finally gives us the ammunition we need to be heard.

We could dig out Koan's good news/bad news story about the farmer now if we like...but I'm sticking to the 'good news' version of events. Attachment, attachment...will I never learn?...:Retro smile:

 

[DysautonomiaXMRV]

@ _Kym_

The question above please in your XMRV survey, number 7., what do we say if our moms had a blood transfusion before we were born?
Do we still say no? (My mom had a transfusion and she's sick too). Thank you.

 

[Nina]

Would receiving a tissue transplant include immuno-suppressive medication?

If so, there is a double risk of contracting XMRV through transplants. Through infected tissue and possibly because of a suppressed immune system after that.

 

[omerbasket]

i havent read the article in question but am worried this will turn out to be just another common opportunistic infection

Why do you people say that?
Again - in the WPI's study 98% (!) of the people with ME/CFS had evidence for XMRV as oppose to a small precentage of healthy people (I think of it and probably 3.7% is just PCR-tested people, but I guess that the total precantge is no more than 10%). Here, only 10% of the immunosupressed people had XMRV - So why would almost anyone with ME/CFS have it just because of an immune deficiency? I mean, it's possible that our immune deficiency makes is much much easier for XMRV to infect us than to infect immunosuppressed people - but isn't it unlikely?

 

[MEKoan]

Mark,

You are perfect just as you are!



Did you say the psychologizers wouldn't have a leg to stand on? How amazing is that?!

Of course, we all knew it would come to this.

Ah well, as I said...

 

[omerbasket]

Perhaps some people with autoimmune diseases are more likely to get sick for example, I have hashimoto thyroiditis and it's pretty common among CFS patients. Hypothyroidism depressed the immune system substantially.

I have fibromyalgia and Crohn's disease. My wish is that if I'm infected with XMRV, treating it would solve both of these problems.

 

[bullybeef]

6.6% is the number!

Thanks Kati (how are you with tax returns!!)

Wasn't 6% total global prevalence mentioned on an email somewhere on here?? The numbers are adding up people!!!!! :victory:

 

[Rivotril]

Why do you people say that?
Again - in the WPI's study 98% (!) of the people with ME/CFS had evidence for XMRV as oppose to a small precentage of healthy people (I think of it and probably 3.7% is just PCR-tested people, but I guess that the total precantge is no more than 10%). Here, only 10% of the immunosupressed people had XMRV - So why would almost anyone with ME/CFS have it just because of an immune deficiency? I mean, it's possible that our immune deficiency makes is much much easier for XMRV to infect us than to infect immunosuppressed people - but isn't it unlikely?

I agree omerbasket
it's exactly the same as with any other (retro)virus:
if your immune system is depressed, you are also more likely to get pfeiffer disease (EBV) and you have more chance to get HIV by sex with a seropositive person.
so: if you are exposed to any virus, the chance you really catch it, is some higher when your immune system i surpressed, so this possibly also is the case with XMRV.
this study might in that case explain the 4% - 10% difference.

you just have a bigger chance to get it, when you're exposed to it

But for ME/CFS, the 4% (or maybe a less more)-98% difference doesn't fit in this theory, so from that point of view the opportunistic infection argument seems invalid. This is also what Mikovits thinks, from what I understand

e.g. (these percentages are totally fictional, but just as an example to compare with ME/CFS and how this study fits in it) 0,8% of the population has HIV, than lets say, in a selected, immune surpressed group, 2% of this group has it. but from all AIDS patients, everyone has HIV

 

[boomer]

Hashimoto Thyroiditis

I would like to see 10 people with hashimoto thyroiditis (who do not have cfs) tested too.

 

[bullybeef]

It's being blogged already: http://elbiruniblogspotcom.blogspot.com/2010/05/xenotropic-murine-leukemia-virusrelated.html

 

[Otis]

Would receiving a tissue transplant include immuno-suppressive medication?

If so, there is a double risk of contracting XMRV through transplants. Through infected tissue and possibly because of a suppressed immune system after that.

Yes. Great observation. One wonders is any of group 3 might have gotten XMRV from the transplant rather than immuno-suppression. By the numbers it would probably be the minority but would have been an interesting discussion topic for the paper.

 

[Robyn]

We should all send this letter to our government officials and say "When is the US going put to a ban on the the blood supply?"

 

[DysautonomiaXMRV]

Omerbasket you ask why do people think XMRV a common opportunistic infection? Good question, probably innocently reading disinformation on the internet, I'd say!
Almost everything I read outside the WPI/Coffin/Goff expert group and the dear resident Gerwyn is 'spin' that easily confuses. (For example, the constant referal in the media to 'contamination' of American labs). All made up by rogue psychiatrists, and circulated to disinform the public and patients themselves. UK Me Association joins in, as do the other 'fatigue' charities who don't want XMRV in their lives...as it blows apart them shoving CBT/GE/Pacing/Counselling as a 'cure' for ME CFS. All laughable of course, but easily sold to people who need 'fatigue' to claim they have ME CFS. Didn't used to be this way, but is now.

You also ask why are the immunocompromised only running 10% XMRV and the well defined ME CFS with organic disease are running near 100% XMRV. Well first could be the method used to detect it, is not identical to WPI, less accurate/sensitive. Also it could be that genuine ME CFS is so very very bad, that anyone with ME CFS and who is XMRV+ is a walking virus machine. (Rather like someone with AIDS).

Hence 'we' could be literally 100% likely to have it, if well defined and not told 'I think you have CFS' (which is evidence of a lazy desk doctor and not neuro immune disease). Conversely, immunological testing and autonomic testing can show neuro immune disease quite easily in ME CFS rather than having a diagnosis of exclusion. ME (Myalgic Encephalomyelitis) is a disease, not syndrome. I believe the WPI used this cohort, and not tired people.

I am guessing that immunocompromised folk, don't have anything like the levels of disablity 'we' have. E.g bed ridden/house bound, at least 1 in 4 people. I'd say we have a gene defect + XMRV = ME :victory: but then... :worried: That hypothesis would stand for all other neuro immune disease where XMRV is found. Makes perfect sense: ME CFS, Atypical MS, Autism, maybe others, all caused by the same incurable pathogen, but we 'react' to it differently due to our gene responses to it.

Maybe Dr Kerr and Dr Gow, and the exercise studies on ME CFS 'exercise responsive genes' will now have to be measured again compared to other folk who are XMRV+ and don't have ME CFS. These appear to be unique ME CFS genes, unique to us. If so, this plus XMRV looks likely to hold the answer to how we got ill, and why we remain sick. Judy M said the amount of XMRV can reduce, this would explain why some of us significantly get better for a while (still not fully better), only to crash back down later.

The second the process is discovered, psychological coping methods 'curing' people with ME CFS goes out of the water and 'The Lighting Process', NLP, 'Tapping for ME ', 'Gupta Amygdala training' and even Vitamins (Marshall Protocol) as a 'cure' for ME CFS would be illegal to sell, just as it would be for HIV/AIDS as a 'cure'. None of these 'recovered' folk have proof of XMRV or gene defects for ME CFS. (Hence the urgent need for a biomarker to seperate people who claim to have our illness, and people who actually have our illness). Currently it's a free-for-all due to the heterogeneous nature of the label. This was only possible by inventing CFS a syndrome, (done by the CDC and friends) to make ME (a neuro disease) the minority. Someone once posted on this forum (in all good faith I must add) ''aren't we all the same, don't we all have the samer interests/goals''? Well no, we don't. Lots of people on here will scratch their heads, and think did I waste years of my life being told I had 'CFS' and it's not XMRV. Of course.

Others will find psychosomatic behavioural modification useful, and become irritated with me, as I am with them. (This was the plan that psychiatry used to hide XMRV: Divide and conquer. Split up, create divisions. Not possible in any other disease, becauses diseases need agreed evidence on abnormalities and/or a test. 'CFS' has none of that. It's actually (ironically) the people without ME CFS who will be more upset than us. And thus the 'fatigue' charities will not invest in XMRV research with the WPI, because they know what the outcome will be for a large proportion of their members. For the 'fatigue' people this is sensible and fair, for the people with neuro immune disease, it's not so good.

I for one think of the dead ME people, we can't help them or bring them back. Maybe when this is all sorted out to some degree, then people selling scam cures will get prevented from doing what they do to an increasingly 'provable' neuro immune disease linked retroviral infection. No fluke happening that the CDC never spent a dime on proper bio-medical research and ignored Elaine DeFrietas, and even the WPI.

Like Robyn says, why isn't the blood supply banned, it's so strange. Almost as if they want to infect more people? 'Cos they're going about it the right way!!! Maybe the thing to do is for us to contact the haemophiliacs and warn them about XMRV if the CDC won't do it for us. The 'blood guy' from the CDC said in the recent May CFSAC meeting words to the effect it was very certain XMRV was infectious in the blood supply and when questioned, he just squirmed and looked embarassed.

http://www.dhhs.gov/partner/bloodsafety US DHHS Advisory committee on blood safety and availablity
http://www.hemophilia.org in USA
http://www.hemophilia.ca/en/ in Canada
http://www.blood.co.uk/ NHS site in UK
http://www.haemophilia.org.uk/ in UK

 

[Dr. Yes]

I'm toast, but here's a few observations...

This study looked in respiratory secretions, not in blood, so it is somewhat surprising to see the same kind of percentages the WPI found. That suggests the possibility that XMRV can easily migrate to any tissues well-supplied by blood. An alternative possiblity would be that XMRV shows a specific tropism towards the lungs.

Important points:

- These researchers did not use the same techniques as the WPI.

- They found XMRV in the respiratory secretions of people with diagnosed or suspected respiratory tract infections [three groups: organ or bone marrow transplant recipients (9.9%), people who had recently travelled by air (2.3%), and people with COPD and suspected respiratory tract infections (3.2%)] and in healthy controls (3.2%).

- As noted above, the control group showed a percentage of XMRV positivity similar to that found in controls by the WPI and Japanese XMRV studies

- Except for those who had travelled by air, the people sampled were known to be from northern Germany. (I don't think we know where the transplant material came from, though).

- The transplant (immunosuppressed) group had an XMRV positivity rate about three times higher than the control group's at the 90% confidence level (but not at the 95% confidence level).

- 10 of the 16 XMRV-positive samples from the transplant group (immunosuppressed) showed no sign of coinfection, despite tests for a variety of viral, bacterial, and fungal pathogens. (Raising the question of what exactly was causing their severe RTI.. it could of course have been one of any number of other pathogens besides XMRV that were not tested for, but...)

- From the study: "Attempts to isolate infectious virus from XMRV sequence–positive respiratory samples failed, possibly because of inadequate storage of samples before virus culturing attempts or relatively low copy numbers of the virus within the samples. Thus, whether the respiratory tract serves as a putative transmission route for XMRV cannot be determined at this time."

In other words they found XMRV sequences in these samples, but cannot say more than that. The percentages in all but the immunosuppressed group are the same or lower as the control group, so there is no evidence of transmission via respiratory secretions. (The 'travel' group had higher percentages of common RTI pathogens like influenza than XMRV.)

- The researchers double-checked the validity of their PCR findings by testing six samples (3+, 3-; I assume the latter were all controls) with two alternative assays.

- One sample out of those six, when tested for type C reverse transcription activity, showed a high level of activity. This suggested an active XMRV infection, but the authors noted that this is not the most sensitive assay around.
--------------------------

We can't draw conclusions yet about what this says about the transmission nor the role of XMRV in any of these cases (though the absence of coinfections in 10 of the 16 positive transplant patients is potentially interesting). The higher rate in the transplant group suggests that XMRV - like other viruses - takes advantage of the kind of immunosuppression transplant recipients undergo.