XMRV: Quiet Time by Dr. David Bell

K

_Kim_

Guest
Dr. Bell has a new issue of the Lyndonville News out (December 2009).

XMRV: Quiet Time

I hope that everyone is able to have a good holiday season.


XMRV: Quiet Time

My thanks to all those who came to the lecture December 6th on XMRV, and to all those who have kindly donated to the research group. None of the research group is paid from these funds, and if we were to stop working the money will be forwarded to some other group working on ME/CFS, probably WPI. In the spirit of full disclosure, pizzas and other relatively inexpensive luxuries do come from these funds, but no vacations in Maui. I had wanted to write back to persons who have donated but that has proven impossible.

The December 6th lecture was well attended. The reason I did not tape it or put it on the web is for two reasons. First I do not know how and we are kind of busy and I didn't want to take time to learn. And secondly, I expect that every few weeks the material will change and I want to keep this talk up to date. I expect that six months from now the talk will be completely different.

I have had a few requests to give a talk on XMRV, and I am happy to do so, it is one of the joys of being retired. The material I present will be either published, from very credible public sources, or my own personal opinion. I will not share back room gossip, even if it is the stuff that makes my socks roll up and down. My goal is to insist that good science goes into discovering what role, if any, XMRV has in ME/CFS. I will go anywhere in the US if the supporting group covers costs and offers a small honorarium. I think spin off benefits from these talks will be to re-invigorate support groups. Dr. Klimas said in her last talk that now is the time for people to get active and I completely agree.


ME/CFS Essay: Nature Abhors a Vacuum

I have a patient in my practice by the name of Sandra Cousins (an obviously false name). She developed CFS somewhere around the age of nine, and I can remember her confusion going from doctor to doctor, occasional visits to the psychiatrist and acupuncturist. Over the years she has been diagnosed with Lyme disease, depression, atypical MS, arthritis, migraine, irritable bowel and lupus, but no one knew what she had. Like many patients, she could tell that, when the medical provider attended to the chart and did not look her in the eye while delivering a diagnosis, the provider had absolutely no idea of what was causing her illness. Same old story.

Years went by, and after five years of illness she improved enough to deny the existence of any illness. She was getting by. She could not go out drinking with her college friends because it made her very ill and then have to miss a few days of classes. All she could do was classes and organize her study time well enough to pass. But she was "fine."

Work after college was a disaster, as was her love life. But she got by, she was "fine." She stopped going to doctors because they had little to offer except medications that made her feel more ill. She resented being told she was resistant to the obvious truth that she was healthy as a horse.

About ten years ago, Sandra went through a change. She decided that she was depressed and that the doctors were right. She took low doses of antidepressants which did little good but made her doctor happy. She joined support groups, went to therapy, and committed herself to accepting the truth. Or at least accepting what other people considered true. Lots of things didn't fit, but at least now she wasn't crazy, she had a legitimate diagnosis, she was depressed. Being depressed and making up somatic symptoms (somatisizing) was a lot better than being crazy. She was no longer lost in the never-never land of no-diagnosis. She belonged. She went on social security disability because she was unable to maintain eight hours a day five days a week because of the depression.

When Sandra was evaluated for ME/CFS, she was classic. She did not feel despair, in fact, now that she was "depressed" she felt quite good. Except for the pain, sleep problems, exhaustion, abdominal pain, annoying lymph node tenderness and the foggy memory that is.

Nature abhors a vacuum; it is much better to have an incorrect diagnosis than no diagnosis at all. Even when the immunology testing, orthostatic testing, and 2 day exercise testing essentially confirmed the diagnosis of ME/CFS, Sandra was reluctant to believe it. Being "depressed" for the past ten years made her more happy than some unknown diagnosis that doctors didn't believe in.


XMRV Study Notes:

In a recent note by Suzy Chapman on Co-Cure, she quotes Dr Charles Shepherd as writing "...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any.

This brings up really important issues in interpreting the results of studies that will come out over the next six months. In my practice over the years, I have seen the whole range of patients from kind-of tired to bedridden orthostatic intolerance. Despite what the different criteria attempt to prevent, much of the diagnosis is based upon using the "force". There are some clinicians who diagnose CFS and I have absolutely no idea of what their patients are like. Through years of observation, I do have a concept of what Dan Peterson's patients are like.

So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities? And what about stored samples? Samples taken in EDTA or heparin? And so on.

So what does this mean? It means that if someone can't find XMRV in a study, it is either because it is not in the patients they tested, or their lab could not detect it even if it was there. Or the strain might be different, or they used the wrong tubes, or the diagnosis was wrong. And on and on. Again using the "force", I would not be surprised if some of the quickest replication studies fail to confirm XMRV. But as long as people do not jump to conclusions too quickly, science will win out. Truth will win out. Thats all I am looking for.


Changing Standards to Establish Cause of ME/CFS

Dr. J Silver in a review in Journal Watch said, "XMRV might be a cofactor in another infectious process, or the immunologic problems of CFS patients may increase their susceptibility to XMRV infection. Patients with depression also have impaired immune function; could psychiatric illness predispose to XMRV? The 4% prevalence of XMRV infection in the control group might indicate that XMRV infection is a risk factor for development of CFS."

I am amazed how mainstream medicine is so fixed in their biases against ME/CFS that the concept of XMRV actually causing the illness almost doesn't enter their consciousness. Dr. Reeves, head of the CDC project on CFS has made only one comment to my knowledge, that he "doubted" this would turn out. What a comment. Why not "Interesting" or "we will see"

Hillary Johnson made some interesting observations. First, "Why wasn't everyone demanding dozens of replicative tests on the prostate cancer findings?" Yet when CFS is implicated we will need twenty studies which replicate the first. And if some poor studies do not find XMRV, they will be given preferential weight to studies that actually find it.

Her second point was that "HIV was hailed as the cause of AIDS in the U.S. in the spring of 1984, after the NCI found isolates in fewer than fifty patients. A few weeks later, an NCI scientist isolated the virus from the blood of a nurse in Los Angeles who fell ill with AIDS after a blood transfusion and the virus was found in the donor blood. That's all it took." Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor.

During the next six months we will know. I am confidant that enough good scientists will try to replicate the WPI study that a bad study here and there will not bury the subject. Meanwhile, what is happening? It is possible that the skepticism is so great that absolutely nothing is happening now. But my hope is that in back rooms across the world scientists are quietly working on this, designing studies to test blood banks, designing treatment studies. Right now is "quiet time"; I hope they are using this quiet time to make some real progress.


Question and Answer

Question: How does XMRV fit in with slow onset ME?

Answer: I have no idea. But in six months to a year we will know. First option is that XMRV has nothing whatsoever to do with ME, it was a fluke, and no one, anywhere, will be able to find it even when they are looking without bias, and in good patients, and with good science. Secondly, XMRV may have either no symptoms, or relatively minor symptoms, and slowly affects NK cells and lymphocytes, permitting reactivation of other viruses over some time.

The Australian government and the CDC may have already done the study revealing the answer, the "Dubbo" study (Hickie I, Davenport T, Wakefield D, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ 2006;333.)

As you may remember, a small percentage of persons developed ME/CFS after Epstein-Barr virus, Ross River virus or Q fever. They must have saved blood from those who came down with ME/CFS and those who did not. Test the blood for XMRV. If it is in the ones who came down with ME/CFS, but not present in the blood of those people who had regular mononucleosis and quickly recovered, we would have the answer. Ahif only it were that simple
 
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Thanks for posting this, Kim. I hope Bell is indicating what researchers will be studying when he asks these questions:

"So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities?"

It would be wonderful is some of these poorly understood problems could be cleared up, and researchers have already named some of these as comorbid conditions. People deserve some relief.
 

oerganix

Senior Member
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Thanks Kim...

Dr. Bell: "Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor."

I don't remember Peterson saying that. Anyone else know about this? I thought I heard him say he was looking for the donor in a case where his patient got CFS after a blood transfusion and that several lawyers contacted him looking for this type of situation. But I don't recall him saying the donor had already been found.

Wouldn't that have made a big headline if it were true? "Blood supply endangered by patients with psychosomatic illness!!!!"
 

Kati

Patient in training
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Dr. Bell: "Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor."

I don't remember Peterson saying that. Anyone else know about this? I thought I heard him say he was looking for the donor in a case where his patient got CFS after a blood transfusion and that several lawyers contacted him looking for this type of situation. But I don't recall him saying the donor had already been found.

Wouldn't that have made a big headline if it were true? "Blood supply endangered by patients with psychosomatic illness!!!!"
Of what I understood he had traced the donor, had the patient's blood before and after the transfusion and was in the process of doing the testing. He also said some lawyers had contacted him too. :cool:

I wonder if the same lawyers would not work on a class action against the CDC and Bill Reeves? :rolleyes:
 
K

_Kim_

Guest
Dr. Bell: "Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor."

I don't remember Peterson saying that. Anyone else know about this? I thought I heard him say he was looking for the donor in a case where his patient got CFS after a blood transfusion and that several lawyers contacted him looking for this type of situation. But I don't recall him saying the donor had already been found.

Wouldn't that have made a big headline if it were true? "Blood supply endangered by patients with psychosomatic illness!!!!"
Right oerganix. Maybe Dr. Bell has heard the follow up on what Peterson mentioned.

I have already been approached by two attorneys that specialized in post-transfusion HIV disease with respect to their being on the lookout for post-transfusion XMRV. And they are very, very keen to pursue this from a legal standpoint for their clients. We certainly interestingly have cohorts of patients who became ill post-transfusion. We have one in particular where we have located the donors of his transfusions. And Im very anxious to test them. We have pre- and post- transfusion specimens on this particular patient so I think that story will be forthcoming. At the present time I think that I would make much stronger recommendation than caution.
 
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starcycle

Guest
Omg - even with a possible pathogen they're STILL trying to pin it on "mental health": :p

"...could psychiatric illness predispose to XMRV?"

Lots of people have had unprotected sex with HIV+ partners and not gotten HIV/AIDS. Please show me one speculation that anyone ever made anywhere that the only reason anyone gets HIV is because they are predisposed to getting it because they're "depressed!"

lol - unbelievable!
 

Kati

Patient in training
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Omg - even with a possible pathogen they're STILL trying to pin it on "mental health": :p

"...could psychiatric illness predispose to XMRV?"

Lots of people have had unprotected sex with HIV+ partners and not gotten HIV/AIDS. Please show me one speculation that anyone ever made anywhere that the only reason anyone gets HIV is because they are predisposed to getting it because they're "depressed!"

lol - unbelievable!
LOL not to be rude to the psychiatrists, but I think they're worried of losing business...

:D


@Eric and Islandfinn, I am also very impatient.

Also can't wait to hear Dr Mikovits on January 22 from 2 to 4 PM:)
 

Samuel

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Starcycle, I think that there was at least one paper in 1984 or so claiming that the stress of being gay was a factor.