Monday, October 18, 2010

ILADS conference 2010 - Dr. Joseph Brewer

The third presentation that drew the attention of the Patient Advocate was a talk by Dr. Joseph Brewer entitled "XMRV and CFS". The PA heard Dr. Brewer give this lecture at the Whittemore Peterson Institute in August 2010. At that time, the Patient Advocate found himself standing next to a tall fellow and reading his name tag: Dr. Joseph Burrascano. What was Dr. Burrascano doing at an XMRV event? His presence, in a nutshell, demonstrates the outreach of the WPI. Thanks to Burrascano four or five XMRV/ME/CFS/Infectious Disease doctors where invited to the ILADS conference.

Dr. Joseph Brewer is an Infectious Disease doctor who practices in Kansas City. Dr. Brewer has worked with both HIV and CFS patients for 25 years. He also has treated many Lyme patients. As far as the Patient Advocate knows, Dr. Brewer has the most long-term experience in dealing with both HIV and CFS, putting him in the catbird seat for diagnosing and treating XMRV and its variants.

In his lecture Dr Brewer gave a brief 101 course on retroviruses. In the course of this presentation the familiar terms came up: transmember protein, surface glycoproteins, endogenous, exogenous, gammaretroviruses, xpr-1 receptor (unknown function), x and p rv, envelope spiked proteins, chemokine co-receptors, cytoplasm of cells, reverse transcriptase, double stranded viral dna, protease, two single strands of rna. Many of these terms have a poetic sound to them.

Dr. Brewer stated that he has been treating a small group of patients with antiretrovirals. The results so far have been mixed. About a third have gotten better, about a third have had very slow partial improvement and about a third have not improved at all. The thought is that these patients, and most XMRV+ patients, have an X variant (XMRV) and a P variant (PMRV) - and, most importantly, that these are two separate viruses, although both from a group of closely related viruses. Speculation is that the current drugs with activity against XMRV work against the X variant and not the P varian. (However it is important to state that Dr Brewer did not say this in his lecture. He said that we just do not know at the moment.) Presumably work is currently going on to identify drugs that will nail the P variant.

Dr. Brewer also talked about Nuclear Factor kappa B and Interferon A and their role in inflammatory illness. He mentioned that data is changing daily - in other words, things are moving fast.

According to Dr. Brewer, XMRV is potentially associated with Parkinson's, chronic Lyme disease, MS, ALS - as well as ME/CFS. In his practice, 90% of his XMRV+ patients are Lyme Disease. (The Patient Advocate had heard previously that all of Dr. Brewer's Lyme patients are XMRV+) Four our of four of his MS patients are XMRV+, 1 out of 1 ALS patient is XMVR+, and 1 out of 1 Parkinsons patient is XMRV+.

With this information, Dr. Brewer paints a very interesting and frigthening picture. It was difficult for the Patient Advocate to determine if this small bomb hit home with the conference attendees or if they just yawned. Dr Brewer, time-tested and a veteran, will remain at the very forefront of the XMRV treatment battle and the Patient Advocate and others will look to his leadership.

Dr. Brewer concluded his lecture saying that it could be surmised that lyme is an XMRV-related disease. What the lyme audience thought of this the Patient Advocate does not know.

It has been pointed out that Dr Andrea Kogelnik, director of the Open Medicine Clinic in Mountain View, CA, also gave a presentation but the Patient Advocate missed this, as he was on his way to Eatontown, N.J. to hear Dr. Judy Mikovits.

11 comments:

  1. thanks for your excellent summaries PA.

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  2. Thank you so much for posting this. I have been wondering how Dr. Brewers trials were coming.

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  3. Thank you so much for these articles. Much needed after CFSAC's depressing event.

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  4. Thank you. I'm too ill to travel so these updates are awesome to have!

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  5. I am probably playing the devil's advocate again, but if XMRV shows up in such huge percentages (85-90%) and in so many diseases (ME/CFS, MS, ALS, Lyme, Parkinson, ...) is it evil incarnate, harmless as a newborn baby or are the tests worthless?
    I do hope that things will start to make sense in a couple of months time. So far more research has resulted in more controversy and confusion.
    Thanks for the effort you put in maintaining this blog.

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  6. As an ME sufferer who has been very hopeful about XMRV, I'm sad to say that if it is really turning up in all of those chronic illnesses it is most likely a passenger virus rather than a causative agent. I hope wider scale testing including a wide range of illnesses and healthy controls will start to clarify things a little.

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  7. Thank YOU Immensely for doing all of the Traveling and Listening and Absorbing, Ccomprehending and writing that we are not able to after 24 years of this bugger. Your family and daughter are most lucky, as are we by default, to have you in our lives.

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  8. Excellent summary.

    On thought on the passenger virus question: there had never been a retrovirus that is a passenger virus. More typically, the two other known retroviruses HIV and HTLV1- damage the immune system such that opportunistic viruses and other pathogens in the group of passenger viruses emerge.

    As I understand it. Whatever the case, it's important not to put "regular" viruses in the same grouping as retroviruses.

    Michael

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  9. Excellent analysis:

    "At that time, the Patient Advocate found himself standing next to a tall fellow and reading his name tag: Dr. Joseph Burrascano. What was Dr. Burrascano doing at an XMRV event? His presence, in a nutshell, demonstrates the outreach of the WPI. Thanks to Burrascano four or five XMRV/ME/CFS/Infectious Disease doctors where invited to the ILADS conference."

    He is controversial, and it is bold to invite him: The WPI is bold.

    In general I think the lyme community and the CFS community should reach out to each other. Many who get treated for chronic lyme get better, but very few get totally well. I think XMRV could play a central role...

    And I also think a significant chunk of the CFS patients would get better with lyme treatment. Not well, but a proportion of them could improve.

    Well, what does the lyme community think?
    I can only speak for myself. But I think that many have an open mind, because we are so used to dealing with doctors with closed minds. I think XMRV plays a central role in chronic lyme disease (perhaps it's the reason it becomes chronic?) and I think many people read the news about the new virus with interest and actually joy, because it offers hope, and it's not unlikely that it's central...

    About ALS. Interesting that you should say that, because in the patient application they assumed that ALS would also be a disease included...

    From the patent application:
    "Multiple Sclerosis (MS), Parkinson's Disease, Amyotrophic Lateral Sclerosis (ALS)"

    http://www.faqs.org/patents/app/20100167268#ixzz0shuVW3kI

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  10. Parkinson's is a very common disease that occurs more in men like my cousin who suffered from this disease and how no one could cure him started buying vicodin online without prescription which relieved their symptoms but without a control volume as there were side effects such as anxiety.

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  11. Dear Patient Advocate,
    Thank you for your insightful analysis of the ILADS conference speakers. I to am a patient advocate for my thirteen-year-old daughter and like you I attended the ILADS conference to gather more information to help guide me in advocating for my daughter who was incorrectly diagnosed with post-illness fatigue syndrome a year and a half ago. I am not sure why you are primarily focusing your weblog on viruses when there were so many excellent presentations at the conference that would be of interest to chronic fatigue sufferers. I want to call your readers attention to several other speakers at the 2010 ILADS conference who shared information relevant to CFS patients. All these presentations can be ordered online. There were several presentations by Richard Horowitz on Multi-Chronic infectious Disease Syndrome. Dr. Horowitz postulates that chronic Lyme disease is actually a symptom complex of multiple co-infections, bacteria, protozoans, as well as viruses. Dr Fry's lecture on blood biofilm communities and the protozoa FL1953 would also be relevant to CFS patients.

    In my daughters case, she has had evidence of Lyme disease, babesiosis, bartonella, and mycoplasma, and a positive Fry labs stain showing extensive biofilm communities and epierythrocytic bacteria. Most of her of her initial lab work lab work was initially negative for many of these illnesses resulting in her CFS misdiagnosis. I am worried that if you just focus your search on viruses, then you may be missing an important piece of the many possible organisms could be causing your daughter's illness. Good luck to you in your search for answers for your daughter.

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