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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. That’

s 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. Ah…if only it were that simple…

 

 

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Disclaimer Any medical advice that is presented in the Lyndonville News is

generic and for general informational purposes only. ME/CFS/FM is an

extremely complex illness and specific advice may not be appropriate for an

individual with this illness. Therefore, should you be interested or wish to

pursue any of the ideas presented here, please discuss them with your

personal physician.

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