From the 1st annual XMRV conference

[George]

I haven't even seen a follow up in the papers, anywhere. Am I missing it??? I have my alerts on but it's as quiet as a mouse.

I don't understand why none of the papers that were presented have been published either. (head scratch) Even the negative ones. It's eerie the silence on this.

 

[VillageLife]

I cannot wait to hear what Mindy says....she was there all day, even if she's not aloud to give us data. I really hope she can give us the mood of the conference and tell us whether she thinks yes it's all going well.

 

[Berthe]

I'm guessing a bit here, but I imagine that there are many bacteria and viruses that activate our immune systems but that don't actually cause disease, illness or any symptoms.
A totally successful immune response might not have any symptoms or illness associated with it... Our bodies just get on with fighting invaders quietly in the background, day-in day-out.
So yes, an antibody does show that there is an immune response, but it doesn't prove an associated disease, or that the virus causes disease.
I think that there are many viruses and bacteria which we have evolved to live in harmony with, but that we do have an immune system response to.
Please anyone correct me if I'm wrong about this.

I guess this is correct, Bob. My physician told me that he could see in my sons blood that he had 'Pfeiffer', or at least a response of the immune system to Pfeiffer, but my son never developed the disease.

Berthe

 

[pictureofhealth]

There were some pretty long gaps between Cleveland Clinic tweets from the Conference at one point yesterday. I think something serious went down and the press have been asked not to report it. Serious as in - lots of pre publication results where embargoes cannot be broken, or serious as in someone squeaked about the blood supply or said something they shouldn't have, or serious as in there is sooo much disagreement between everyone' position(s) that the press have been asked to give them a bit more time to sort it all out. That's my take anyway.
Or maybe everyone is just flying home and there was sooo much info they are trying to remember who said what for their summaries. There won't have been too many smooth soundbites coming out of this Conference for the press!

 

[Recovery Soon]

I have to say Judy Mikovits looked shattered by the Q&A yesterday evening.

A lot of folks have said this. Here's my take on her demeanor-

She is a firebrand, who was exercising every bit of restraint in her body not to let loose on the shoddy science and some of the scientists sitting in the room with her. By nature, she is brilliantly forceful- but her tone was clearly softer, and her body language reflected the struggle.

My guess is that her demeanor was strategized beforehand by the WPI camp. This was primetime and she had to play nice.

That's also why I believe Stoye was seated next to her, sharing one mic. I think they feared what she might say, and his fail safe was to pull it away.

Have no fear, when the moment is right, she's coming with guns blazing.

 

[VillageLife]

I got this email from Dr Holmberg this morning (He was on the Q&A team last night)
I don't think he will mind me posting it.

---------
You are very welcome. We have come far in less than a year. Although there is more work to be done, the legitimacy of our efforts are being established.
--------

 

[urbantravels]

Can someone explain to me what was going on at the very end there, in the discussion of HTLV, where Dr Mikovits said something about "do you have therapies" and the mike was pulled away? I have looked at the transcript and it doesn't help that much. Obviously some heavy subtext there (or callback to something that had been discussed earlier)

 

[anciendaze]

George - your post #493 A Dog's Opinion (!) blew me away.

What a brilliant hypothesis/analysis of the political manoeuverings & power struggles which could very well be going on behind closed doors...

Any dog could tell you the secret: keep your eyes on the alphas in your pack. Don't trust me, ask your own dog.

 

[Sherby]

Hi all, sorry to butt in and change the subject slightly, but have heard the name Stoye mentioned a couple of times. Was he the chap at end of the table next to JM. If so is he the same person as mentioned below, and how does he fit into the scheme of things. Found this on ME Association. Thanks

None of these five research groups - which in the case of the UK included Professor John Gow, Dr Kate Bishop, Dr Jonathan Kerr and Dr Jonathan Stoye and used patient samples supplied by physicians and neurologists including Dr Abhijit Chaudhuri and Professor Peter Behan - have been able to find evidence of XMRV in blood samples from ME/CFS patients, or in the healthy controls.

 

[alex3619]

Hi Bullybeef, the immune system doesn't care if something is pathogenic: it just tries to match anything. The body has oodles of different antibody making cells (B cells), but these dont switch on and replicate unless it finds a match for the antibody it carries. What antibodies you can make is partly random, and these cells can randomly shuffle their DNA to make a huge assortment of antibodies - although I think this is supposed to be switched off after a certain time, i dont recal when. This is why the body can attack itself: if one of these B cells has antibodies to your own body, and this type of B cell wasn't eliminated by the body, then you get an autoimmune disease.

So when one of these cells finds a match to hmrv, it doesn't care what it finds, it just attacks.

Bye
Alex

That's really interesting point, and not being scientifically minded at all, could someone answer this question.

If the body creates antibodies to fight XMRV, which in turn proves XMRV infection, why would the body create an antibody to something that isn't causing disease? Does an antibody to a foreign infection, or an attack on the body's immunity not equal disease?

There’s probably a simple answer, but it if someone could humour me, it would be appreciated.

 

[VillageLife]

what seems to be the first official news from the conference.....

Researchers Study Virus' Link to Chronic Fatigue Syndrome
Does XMRV Occur in People With Chronic Fatigue Syndrome? Studies Yield Mixed Results

http://www.webmd.com/chronic-fatigu...-study-virus-link-to-chronic-fatigue-syndrome

Sept. 9, 2010 -- An international group of scientists met this week at the National Institutes of Health to discuss a retrovirus that has been linked to chronic fatigue syndrome and prostate cancer. XMRV (xenotropic murine leukemia virus-related virus) was first identified in humans in 2006.
“We are at the very earliest stages” of understanding XMRV, said Cleveland Clinic urologist Eric Klein, MD, part of the team that discovered the virus in men with prostate cancer.
Studies in Confusion
Understanding the retrovirus was made more difficult over the past several months, as studies on the links between XMRV and chronic fatigue syndrome (CFS) were published with widely divergent results.
In the first study, published in the journal Science in October 2009, 67% of patients with CFS were infected with XMRV, while less than 4% of the control group tested positive for the retrovirus. Last month, a joint FDA/NIH study published in Proceedings of the National Academy of Sciences reported a strong link between CFS and a virus very similar to XMRV.
In the 10 months between the publication of those two studies, however, a report from the CDC and several other studies found no connection between CFS and XMRV.
“We’re trying to hash out why the negative studies were negative,” Klein said during a morning break. “There’s debate about the robustness of the techniques used in the four *negative studies as well as how the researchers defined CFS [when selecting eligible participants].”
More Questions Than Answers
At this point, experts are unable to say whether XMRV causes disease or whether it is a benign infection. Klein estimates that it will be a few years before there is enough evidence to answer such a basic question.
He compared what we know now about XMRV with what researchers understood about HIV at the beginning of the AIDS epidemic in the early 1980s.
“There was a great deal of skepticism about what caused the disease, and it took time to fit all of the pieces together,” Klein said. “With XMRV, we’re just gathering the puzzle pieces now.”

 

[alex3619]

Hi George, you might be surprised how many knew about Dr. Marshall, although that might be only in Australia. I knew about his research in the 90s, and he is a personal hero of mine - but I have never had a stomach ulcer. I was looking for medico researchers who thought outside the box as a model for how to go about treating CFS, and he fit the bill. Also, his work was covered in lectures at uni. Many know the story - most of my non-cfs friends know the story, and I never had to tell them. Then again, that may have been true only for Australia.

Bye
Alex

(H. Pylori - Dr. Marshall proved that bacteria caused stomach ulcers and antibiotics would literaly cure them. It took down a huge industry of surgeons who operated on hundreds of patients per year to remove ulcers and portions of patients stomachs. It was believed that the ulcers always came back because people engaged in the same stressful and poor habits after the surgery. Ulcers were caused by stress, poor eating habits and drinking. The new form of treatment was implemented very quietly over a five year period and no one really new about the change unless you were a patient.)​

 

[August59]

Zoologist??

I'm going to engage in the vile habit of quoting myself, because something I added to an earlier post got no response.I'm trying to set bounds on our ignorance here. The statement that exogenous retrovirus infections are generally not benign was a 'rule of thumb'. The objection dealt with a particular counter-example with limited data. This might also be called a 'rule of thumb'.

What I've been getting when I translate our confidence about cancers in gibbons to humans is that the statement could be perfectly accurate and still have unacceptable implications for human health. If the incidence is 1:10,000 infections, and 20,000,000 are infected in the U.S. alone, that would mean about 2,000 cancers in the present population. NCI studies cancers affecting smaller numbers. Considering the small populations of some rarer gibbons, we might be missing an incidence of 1:1000, particularly if immune dysfunction is the first sign. The same numbers would boost this to 20,000 cases in the U.S.

The bottom line is that, yes, HMRV might not be causing cancers or neurological disease, but our confidence in data from animal studies is not great enough to rule out enough of a problem to justify a significant research effort. (And, how do you measure cognitive deficits in gibbons?) This is simply background reasoning, without considering Ila Singh's surprising statement about the apparent incidence of lymphomas in humans with infection.

This subject is going to be investigated in depth.

I remember a lady that had her hair pulled back and speaking of animals and got the impression that she was with a zoo. However, I cannot remember where the zoo was and whar her name was.

 

[bullybeef]

Hi Bullybeef, the immune system doesn't care if something is pathogenic: it just tries to match anything. The body has oodles of different antibody making cells (B cells), but these dont switch on and replicate unless it finds a match for the antibody it carries. What antibodies you can make is partly random, and these cells can randomly shuffle their DNA to make a huge assortment of antibodies - although I think this is supposed to be switched off after a certain time, i dont recal when. This is why the body can attack itself: if one of these B cells has antibodies to your own body, and this type of B cell wasn't eliminated by the body, then you get an autoimmune disease.

So when one of these cells finds a match to hmrv, it doesn't care what it finds, it just attacks.

Bye
Alex

Thanks Alex, makes perfect sense, and something I should have known after being told I had colitis in 2006.

It is annoying how they keep jumping on the contamination bandwagon even after Dr. M stated on the IiME DVD that she cannot help a patient create an antibody to a contamination.

BB

 

[alex3619]

Hi

We've known for many months that XMRV didn't replicate much. It disappears from the blood after 40 days, and appears to have a limited number of replication cycles. It now appears that this is the primary concern that may make antiretrovirals not effectively treat CFS. However, they would slow or limit viral relapses/triggers. I think they should be used prophylactically, to prevent MLVs from replicating when we are injured, run down, or have a raging infection. In other words ARVs will help, but wont be a magic wand under these circumstances.

There is also the issue of protein envelope. Even if the virus is not replicating, is it making neurotoxins?

bye
Alex

He said in the Q&A that CFS is almost certainly not caused by the active replication of HMRV (paraphrased). He did make that point emphatically.

It's a scary prospect. It leads me to think he knows some facts we (and the rest of the people there) do not.

 

[Sunshine]

Originally Posted by bullybeef
That's really interesting point, and not being scientifically minded at all, could someone answer this question. If the body creates antibodies to fight XMRV, which in turn proves XMRV infection, why would the body create an antibody to something that isn't causing disease?

Excellent question Bullybeef.

CDC in it's history has classed CFS as an 'Emerging Class 1 infectious disease'.
The World Health Organisation classifies ME, as a neurological disease. (ICD 10 - G93.3).

Even if none of the above had happened, there are numerous studies showing the disablity levels in ME & CFS equal: COPD, Asthma, AIDS, Heart Failure, MS. (Importantly mental illness does not cause these levels of disability). Neither ME or CFS, has ever been categorized as a mental illness.

So thankfully for patients with the label 'CFS' and 'ME' health agencies have told them they have diseases and illness and they are not healthy. Which would be expected if infected with an exogenous infectious retrovirus, XMRV (An MULV).

I am interested that you say XMRV is 'not causing disease'.

As no study has ever taken place and no data exists on people infected with XMRV to measure levels of health or disablity compared to controls without XMRV, one cannot plant any validity on the above statement quoted. One can assume this is the case, however, if one watches the 1st International Conference on XMRV broadcast from the NIH. If one is not aware that positive data exists, I too would assume this. That is fully understandable, especially if the chair of the conference (John Stoye) from the UK MRC pulls Dr Mikovits's microphone away when she is trying to answer a question on possible disease mechanisms of XMRV and suddenly called an end to the conference, 1 hr prematurely with no explanation.

http://www.youtube.com/watch?v=VBHZGPIRzOU
(See 6 mins 12 seconds elapsed onwards).

There is some data on XMRV in people with chronic neuro immune disease running at percentages of 80% (Cheney) and 98.8% (WPI) via culture detection method in people with the labels ME and CFS. Healthy people have been detected at levels far lower at 4-7% using the same methods. This is considerable evidence of XMRV causing disease, and there needs to be more data collected. Naturally much more research needs to be done in people who have 'well pedigreed' CFS and neuro immune disease Vs CDC CFS and UK Psychiatric CFS (Oxford Criteria) which the UK Medical Research Council (MRC) use for their research into CFS/ME and who believe CFS/ME is best treated with mind control (CBT) and exercise.

Interestingly, the chair of the conference, (John Stoye) co-authored a negative XMRV paper on CFS, and his employees (the MRC) are in ownership of data on ME covered under the official secrets act in the United Kingdom that cannot be released until the year 2070. The MRC also exclusively fund psychiatric medical research into CFS/ME in the UK, but will not allow biological research for reasons they refuse to explain, even in court. Their highest receiver of money from the MRC is Professor Simon Wessely, who says ME is a form of hysteria, and a reason to claim social welfare benefits. Even more interestingly the same man gave samples from his psychiatric clinic of fatigue (ME is not a psychiatric illness) to Myra McClure, who did not follow the methods of the WPI to detect XMRV, and like Stoye, also did not detect XMRV.

Combined they both produced two negative studies, and just happened to feature in the recorded Q&A session at the NIH. By chance, Dr De Meirleir, and Dr Cheny were not featured, and who both have XMRV infected patients from around the world. One may ask why negative studies (that are pointless in presenting), take precedence over positive studies, that may help explain some cases of people with the label ME CFS who have an positive XMRV blood test result and live in poverty and misery.

Thank you.

 

[George]

Hi George, you might be surprised how many knew about Dr. Marshall, although that might be only in Australia. I knew about his research in the 90s, and he is a personal hero of mine - but I have never had a stomach ulcer. I was looking for medico researchers who thought outside the box as a model for how to go about treating CFS, and he fit the bill. Also, his work was covered in lectures at uni. Many know the story - most of my non-cfs friends know the story, and I never had to tell them. Then again, that may have been true only for Australia.

Bye
Alex

Hey Alex
I am totally not surprised by that. (grins) I've seen the refrence to Dr. Marshall on the boards several times. Please, don't think I was being a weiny dog that I added it in there. I was just re-reading what I wrote and thought, oh my gosh, what if someone new has no clue what I'm talking about, better put it in just in case.

At this point, experts are unable to say whether XMRV causes disease or whether it is a benign infection. Klein estimates that it will be a few years before there is enough evidence to answer such a basic question.

I had just read this Villagelife and was coming to post, (you still got the fastest fingers, Grins) I bet fell off pillow when I saw that part. But you know I've been reading about HTLV often called the forgotten retrovirus, there are very few treatments for it and most care is pallative, keep the patient comfortable till they die, which can take years. AKKK I thought to myself, can I live with that, that fact that there may not be effective treatments????

I think I could, heck I'd have to if that's the way it played out, but dang it I just want to "know" ya know????

 

[bullybeef]

Excellent question Bullybeef.

CDC in it's history has classed CFS as an 'Emerging Class 1 infectious disease'.
The World Health Organisation classifies ME, as a neurological disease. (ICD 10 - G93.3).

Even if none of the above had happened, there are numerous studies showing the disablity levels in ME & CFS equal: COPD, Asthma, AIDS, Heart Failure, MS. (Importantly mental illness does not cause these levels of disability). Neither ME or CFS, has ever been categorized as a mental illness.

So thankfully for patients with the label 'CFS' and 'ME' health agencies have told them they have diseases and illness and they are not healthy. Which would be expected if infected with an exogenous infectious retrovirus, XMRV (An MULV).

I am interested that you say XMRV is 'not causing disease'.

As no study has ever taken place and no data exists on people infected with XMRV to measure levels of health or disablity compared to controls without XMRV, one cannot plant any validity on the above statement quoted. One can assume this is the case, however, if one watches the 1st International Conference on XMRV broadcast from the NIH. If one is not aware that positive data exists, I too would assume this. That is fully understandable, especially if the chair of the conference (John Stoye) from the UK MRC pulls Dr Mikovits's microphone away when she is trying to answer a question on possible disease mechanisms of XMRV and suddenly called an end to the conference, 1 hr prematurely with no explanation.

http://www.youtube.com/watch?v=VBHZGPIRzOU
(See 6 mins 12 seconds elapsed onwards).

There is some data on XMRV in people with chronic neuro immune disease running at percentages of 80% (Cheney) and 98.8% (WPI) via culture detection method in people with the labels ME and CFS. Healthy people have been detected at levels far lower at 4-7% using the same methods. This is considerable evidence of XMRV causing disease, and there needs to be more data collected. Naturally much more research needs to be done in people who have 'well pedigreed' CFS and neuro immune disease Vs CDC CFS and UK Psychiatric CFS (Oxford Criteria) which the UK Medical Research Council (MRC) use for their research into CFS/ME and who believe CFS/ME is best treated with mind control (CBT) and exercise.

Interestingly, the chair of the conference, (John Stoye) co-authored a negative XMRV paper on CFS, and his employees (the MRC) are in ownership of data on ME covered under the official secrets act in the United Kingdom that cannot be released until the year 2070. The MRC also exclusively fund psychiatric medical research into CFS/ME in the UK, but will not allow biological research for reasons they refuse to explain, even in court. Their highest receiver of money from the MRC is Professor Simon Wessely, who says ME is a form of hysteria, and a reason to claim social welfare benefits. Even more interestingly the same man gave samples from his psychiatric clinic of fatigue (ME is not a psychiatric illness) to Myra McClure, who did not follow the methods of the WPI to detect XMRV, and like Stoye, also did not detect XMRV.

Combined they both produced two negative studies, and just happened to feature in the recorded Q&A session at the NIH. By chance, Dr De Meirleir, and Dr Cheny were not featured, and who both have XMRV infected patients from around the world. One may ask why negative studies (that are pointless in presenting), take precedence over positive studies, that may help explain some cases of people with the label ME CFS who have an positive XMRV blood test result and live in poverty and misery.

Thank you.

Thanks Sunshine for that comprehensive answer.

And you have highlighted the specifics of my question.

I understand that antibodies can form and attack almost anything foreign, and as with autoimmune disease can attack the body.

But if we speak specifically of XMRV, antibodies wouldnt form and attack XMRV if it was benign, so wouldnt this show that XMRV is causing damage, and therefore disease?

And on this point, if a person is infected with latent XMRV, would they show negative on a serology test? Again proving that the body specifically creates antibodies for XMRV when it is active, and causing disease.

BB

 

[Navid]

the gentleman from pittsburgh?

hi all:

great discussions.

does anyone know the name and perhaps even email address of the gentleman from pittsburgh who had so much to say at the q and a session.

i would like to learn more about him and then teach him a bit about the suffering and pain a cfid's/me patient endures on a daily basis. he seems to be a brilliant scientist...but not quite up to speed on our daily burden and the need for speed in research. his ideas if adopted could take years before we see any treatment.

and the fact the myra monster mcclure would lke him to play a larger role in the research makes me worried....as she obviously DOES not want to see xmrv proven to be causal to cfids...man if i was judy i would have wanted b_tch slap that woman!!!!!!!

Now that we have the GOVT's attention we need to ACT-UP and ask the tough questions/pull the old skeletons out of the closet like mindy tried to do at the meeting

.....remember what fauci said abt medical treatment for hiv/Aids...there was before Larry and after Larry Aids treatment...Larry Kramer who raised a raucous rabble to get treatment to HIV/Aids patients more quickly than normal scientific timelines would....we need a larry kramer to lead a group of cfids/me rabble rousers.

Rivka...maybe we need to have a strategy session w/Larry...maybe he wants to help out another group of under-served ill people.


thanks

 

[leela]

Huh. I'd have to go back and look, but I remember PittsburgMan simply making the point that replication studies should be done where all parties use blood from the same patients, use the same methods of collection and strorage, and the same assay. Sounds like a really sound, logical idea to me, to end once and for all this stupid in-fighting, as well as the politicization of the definition of ME/CFIDS when it is really a medical science issue.

Of course for us, that would mean the blood samples coming from Peterson, Cheney, Bell, Klimas, WPI, etc.....but wouldn't that be grand?