Tuesday, October 12, 2010

Science Day

On Tuesday October 12, 2010, the Health and Human Services Department held the first Science Day in their architectural monstrosity at 400 Independence Avenue. It was billed as “CFS Science Reviews”. This conference day was not an auspicious beginning (if indeed this is a beginning). Perhaps the coordination of a day-long CFS conference should be left to someone else besides HHS? This so-called Science Day was webcast - so everyone can make up their own mind. As far as the Patient Advocate is concerned he could have taken the day off and not missed anything. This Science Day was like a bad CFS 101 course - a mishmash at best. Perhaps it was well intended - who knows? The fact that there were some highpoints does not discount the fact that this is what is called a “lost opportunity”.

The Patient Advocate would have hoped that this conference had some real thrust or energy to it. It had none. After all there are things happening in the real world with ME/CFS. At a minimum the PA would expect the conference to focus on recent developments in the field. There could have been an effort to consolidate ideas that have emerged since October 2009. Let’s fight it out in the open.

This much we know. This Science Day would not have happened but for the Science paper. None of us would have been sitting in that room today if it were not for the Science paper. Instead of focusing on the unfolding reality, scrupulously careful efforts were made to not mention the WPI (the name showed up on one slide) or Mikovits. This was, of course, non-sensical.

Instead the day proceeded as if nothing had changed in the last year. It was like a compressed version of the 2007 Ft. Lauderdale CFS conference – varied rehashed subject presented as a ghastly bore. The problem was mostly contextual – so the Patient Advocate suspects intention. Someone was trying to deliver a message here.

Consider for a moment the ways and manners of the organizers of the InvestinME organizers in London. They make a great effort to focus on a specific theme. They choose their speakers carefully in order to synthesize or draw tighter a particular ME/CFS issue. As the ME/CFS research has consolidated in the last two years, InvestinME's focus has sharpened. There is nothing smug about these UK organizers. They resist acting out their prejudices and keep an open mind. In London, the spectator, in this case the Patient Advocate, comes away enlightened and excited by the coming together of threads and ideas. The PA can count on the 2011 InvestinME conference to be very exciting.

Today’s conference was exactly the opposite - a set of finely wrought loose ends, with a bit of grinding teeth thrown in.

Today’s conference was neither exciting nor useful. For starters little care was given to present a clear thrust, either through research or through treatment. The speakers hailed from both areas and presented a great unevenness. Here is the line-up.

The Patient Advocate has seen Dr. Nancy Klimas speak on a number of occasions. Today she really sparkled and came across as a high-minded champion of the ME/CFS clinician/researchers. Since October Klimas seems to have found her niche and is energized as the PA has never seen her before. More power to Dr. Klimas, as the ME/CFS community needs more of these kind of people. Dr. Klimas gave the very best version of her standard talk of the immune system, emphasizing the potential of immune modulating treatments (as opposed to retroviral attack drugs). Her work in developing a cytokine profile to track and assess progress in treatment was very exciting - and a bit clearer than she has presented before. The Patient Advocate wonders whether Klimas’ cytokine profile dovetails with the work being done at the WPI and by de Meirleir? It is the PA’s view that means are currently at hand, or shortly will be, for measuring viral load and immune function. The grousing from the virologists in this regard is a red herring. It is time for treatment trials to begin.

The Patient Advocate had last seen Professor Ron Glaser in 2007, when he gave a fascinating talk on EBV and its “masks”. Since then Dr. Glaser has disappeared from the CFS lecture scene, but today he resurfaced, newly armed with NIH grant money, which he mentioned one too many times for the PA's taste. Once again Dr. Glaser gave a very compelling talk, similar in many ways to the 2007 talk (if not the same one). The Patient Advocate wondered about the inclusion of this talk, and where it fit into the current picture, especially since there are so many other compelling subjects and physician/researchers who could reflect more dynamically on the changing topography of this illness. The PA would pay to see Dr. Glaser talk - but in another setting please!

The obligatory grousing about XMRV was fully represented by Professor Stuart Legrice, who gave a “report” on the 1st annual XMRV conference. Where do they find these people? His “report” emphasized and then reemphasized the need for caution, the need to be careful, the need to go slow, the need for time for science to go at its own pace, and the plea to not do anti-retroviral trials (except if trackers are developed). It was all a bit thick. The most interesting part of his talk was that after waving repeatedly all the flags for caution, including the repetitive emphasis that the Science study was possibly the product of contamination, he covered his backside regarding the reality that something might actually materialize out of this “XMRV thing”. The Patient Advocate could hear, in the background, alarm bells going off. This little lab in Reno, no matter how things evolve, has turned the world of these virologists upside down.

The Patient Advocate has no assurance about how all this is going to turn out with XMRV (although the PA does have his suspicions). This kind of “overview” presenting a heavily slanted view, supposedly weighing “both sides”, does not further the conversation. In fact it tends to hinder the conversation. This man states the obvious, but in an unfriendly and supercilious manner. None of this would bother the Patient Advocate except that he has heard it before. The Patient Advocate sensed this virologist was grinding an axe, delegated by other interests, and indeed seemed ridiculous and embarrassing. Am I to believe that this fellow has my best interest in mind? Who needs these patronizing sanctimonious admonitions? Is he talking to me?

Professor Alan Light began the afternoon session. He and his wife do serious and important research in exercise and fatigue. He gave one of the most compelling research talks at the Reno conference in March 2009. This was an expanded version of that talk. Once again the Patient Advocate wondered where this research fit in, especially given the need to focus? The Patient Advocate, if it were up to him, would have invited only clinician/researchers (and Mikovits) and let them have a go at each other. These are the people who are holding the keys to the lock – not Light, not Glaser, not Jason, not that other guy.

Leonard Jason was his usual amusing and sharp self. Frankly, as smart and convoluted as he is, the Patient Advocate is getting tired of Dr. Jason getting platform time - when there is so much more actionable information out there. Now is the time for action, not talk. The PA believes that Professor Jason research has been useful in focusing dialogue and definitions, but where will this end? – and what does it mean for the current, accelerating situation? The Patient Advocate thinks that the reality has shifted in ME/CFS research. The talking part of this illness needs to be down-regulated, and the action part of the illness needs to be up-regulated.

So much talk and time is focused on defining the patient population. To the PA, this is one of the big mysteries of "research". The Patient Advocate believes Dr. Bell when Bell says that no other disease presents itself as CFS. There is nothing like it and its outlines are clear. The PA himself, a sculptor, believes that he can diagnose this illness. Most ME/CFS patients also believe this. This is not the big mystery that it is made out to be.

The best part of the day was left for the end. Once again the Patient Advocate got to hear Dr. A. Martin Lerner, an I.D. doctor who himself was disabled with CFS for six years. Dr. Lerner is a modern American hero, and he has single-handedly brought betterment to many patients. (The Patient Advocate has tried to consult with Dr. Lerner, but this has not been allowed.) Dr. Lerner has kept detailed records of hundreds of virally compromised patients and has recently, with the help of others, assembled studies of his treatment protocols. The Patient Advocate heard Dr. Lerner in 2008 in London and the PA will reprint what he wrote about Dr. Lerner then - as most of the essential matter remains the same.

“Dr. Martin Lerner made a longer presentation on his work sponsored by the A. Martin Lerner Foundation. This was the first time, I believe, that Dr. Lerner has spoken in the UK; and there was the sense that few members of the audience had a clear idea who he was or what he does. Dr. Lerner presented a lecture similar to the one that can be seen on the Internet, with the significant addition of recent long-term data. Dr. Lerner is probably the most experienced doctor in using anti-virals for subsets of CFS in the world. Highlights of the lecture are expressed here. Dr. Lerner has compiled six years of data of 180 patients, including 5000 visits and 45,000 pieces of information.

Dr Lerner has separated the 180 patients into two groups with similar demographics: Group A (138 patients) - CFS Herpes virus illness (EBV, HCMV, and HHV6, in some combination) with no coinfections, and Group B, CFS Herpes virus illness (EBV, HCMV, HHV6 in some combination), with co-infections (Lyme, Babesia, etc). He presented information only on group A. Lerner uses the Fukada definition. Patients in Group A were identified through positive IgM recombinant p18 monoclonal VCA, abnormal Holter monitor assessment and abnormal cardiac wall assessment. More specific details of this screening are publicly available. Specific long-term pharmacokinetic therapy, (Valacyclovir, Valgancyclovir) was administered to each patient. Using his own Energy Index (EI) point score (1-10), Lerner determined the mean score for 138 patients at baseline was 4.5. The mean final EI point score was 6.0. These data indicate that specific long-term pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term significant benefit to Group A patients. There was no toxicity to this long-term antiviral therapy. In answer to a question, Dr. Lerner indicated that there were remarkable improvements to heart irregularities.

Dr. Lerner strongly believes that viral subset CFS treatment options exist right now, today. His foundation is working on a DVD training film for physicians. While Dr. Lerner holds various patents on his treatment protocols, with several more pending, he gives every indication of being a dedicated practitioner and researcher who wants to get his information on antiviral treatment to a wider audience.”

There were general questions after both the morning and the afternoon sessions. They were uniformly academic questions, obscure, nonsensical, centrifugal – except for two very sharp question by Cort Johnson and one great question by Dr. Joan Grobstein, which first they tried to avoid having her ask and then they didn't want to answer.

There is momentum in the ME/CFS world, and this conference did not in any way advance this. In fact, in the unreality of the majority of presentations, the conference did its best to hamper movement forward. The Patient Advocate would recommend canceling future Science Days and letting others, like InvestinME and the WPI, take care of coordinating research and treatment.

Disgusted, the Patient Advocate took the train out of town. The PA is heading for the ILADS conference in Jersey City, where, for the first time ever, ME/CFS/HIV doctors have a large presence in the form of Dr. Joseph Brewer, Dr Marcus Conant and Dr. Jose Montoya and others. On Sunday October 17th Judy Mikovits and Susan Levine speak at the NJCFS conference in Eatontown, N.J. Let’s hope Dr. Levine gets on board. These conferences will be more stimulating for the non-politically minded.

Please don't miss the patient testimony of my friend Joan, scheduled as the first presenter on Wednesday morning.

11 comments:

  1. thanks 4 the recap....you captured what we heard and saw via the video stream perfectly....a mostly big blah out of touch/date day.


    please, please, please do report back to us what u hear and learn at the ilads mtg...what a fabulous line-up....conant, brewer, montoya......yay!!!!!


    say hi to dr. judy from all of her grateful "groupies" on sunday : )

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  2. 1 more thing did dr lerner cry when he talked so eloquently abt how poorly cfids pts are treated ;8....he seemed very moved.

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  3. anonymous,

    I did not notice that, but he got very angry several times, in ways that I have not seen him get before.

    Chris

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  4. I think that Dr. Michael Houghton (the guy who did the roundup summary) has been paying too much attention to Prof. Myra Clure - did anyone else notice how similar his approach was to the WPI - i.e. wishing them well, hoping that it really works out for the XMRV association and then sticking the knife in by raising the spectre of contamination again whilst ignoring all of the evidence to the contrary.
    I note that he also reinforced the Weiss assertion that the Alter/Lo study did not confirm the WPI findings and hence tried to isolate the WPI as the only research group to have found an association. This is simply not true - what about the Spanish and Dutch studies ?
    This is politics and bullshit !!

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  5. Stuart LeGrice was acting in character for an administrator worried about organizational politics. I had wondered about his presence on the panel at the workshop Q&A session, since few people asked him questions, and none got very useful answers.

    He has avoided internecine warfare with powerful interests, like the CDC group or NCI. He appeared to blame potential problems on WPI, ignoring collaborators inside the charmed circle of government funding. He ignored the utter lack of validation, (to say nothing of invalidation by Jason,) of those current diagnostic criteria used by skeptics. He ignored the lack of clinical positive controls in negative studies, (which could be found without taking any position on any illness, as infection has turned up in healthy blood donors.) He ignored the logical fallacy of creating cohorts by excluding those with signs of viral infection, known or unknown, then using the same cohort in a test of an hypothesis of viral infection. Logic and reason were used very selectively.

    This is not to say he was leading the opposition. He was curiously careful to avoid committing himself to such a position. He even mentioned specific preparations for quick clinical trials when certain questions are resolved.

    This man has access to inside information. He has a clue about which way disputes will be resolved. He is positioning himself and his organization to take advantage of that opportunity. Meanwhile, he is running a delaying action while various groups currently in disarray get their act together, and prepare for the coming storm.

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  6. I'm a mom (with CFS for a decade now)of a son with Asperger. I love your blog and the way you write. I really think it's nauseating how narcissistic some scientists are. It's obvious that for this reason they grudge Mikovots and WPI the light of their eyes.
    As an acedemic I know the ins and outs of the scientific world. As a person and a patient I fear their tactics.
    I look forward to your next topic.

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  7. I was a patient of Dr. Martin Lerner for a couple years. The man is erratic, abusive and I finally fled to be a patient of Dr. Charles Lapp which has been a wonderful experience.

    Dr. Lerner is an egomaniac who told this patient who had CFS for ten years at that point that she did not have CFS. When he put you on something and you did not respond in the way he expected he would yell and accuse a patient of ruining his research or sabatoging it! He did this to me and I heard him do it to others while I waited to see him. His own staff would come in and tell us patients not to pay attention to him and that he abused them also.

    I live in Michigan, know and have known a number of Dr. Lerner's patients. They have all experienced the same abuse. Those who are still seeing him are doing so out of desperation since there is not another doctor known in our area that treats CFS.

    I cringed when I heard him say patients are getting treated meanly by physicians and looked as though he would cry. What denial! I viewed this as a classic case of projection.

    For the record none of the patients I know who he put on antivirals had much improvement that lasted. They had many new symptoms as side effects from the anitvirals. After having been his patient and witnessing his behavior I can see him manipulating his research.

    And lastly this patient is now in her 18th year of CFS! So much for Dr. Lerner's expertise in CFS.

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  8. It was clear to me watching the CFSAC Science Day that we are seeing a COVER-UP by the US government. There is obviously no intention to research XMRV. Dr. Lerner is stuck in the past. He is still saying that EBV is the cause of ME, and he is the one who received NIH grant money (our tax money), not WPI. I have been sick with this illness for 24 years now, and after that Science Day, it is clear to me that our government is planning to use our tax funds against us in an attempt to keep us sick for another 25 years. The work of the WPI is the first real hope I have had in 24 years, and the CFSAC (Houghton) says it was contamination. I watched as the CFIDS Assn. (McCleary, Vernon) accompanied by their pet forum owner (Cort Johnson) cheered the macabre playing of this Science Day charade yesterday. To say this was disheartening would be a huge understatement. But it did make it crystal clear that if we are to find answers which will help us get well, IT IS UP TO US! The US Govt and the CAA are working against us. If we want answers, we will have to fund the research ourselves. It is up to us now. Our "patient" organization and our government have not only failed us, they are actively working against us. SUPPORT WPI!

    Patricia Carter

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  9. Sounds like my instincts not to attend this meeting and cancel my spot for testimony when I saw the agenda was correct. I am looking forward to hearing Dr. Mikovits speak this weekend at the NJ conference. This will be the REAL "Science Day!" Support WPI indeed!

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  10. Wild Daisy, Lerner is working on XMRV research with our hero. I don't think that would be considered as stuck in the past. No where does he say that EBV is the cause of CFS. He also treats CMV and HHV6. He doesn't say that these are the cause either. Only that treating these viruses can bring relief to some.

    Warmheart, I'm a patient and I'm @ 90% but when I go off the antivirals I decline. Hence Lerner's involvement in XMRV. I know several others who have gotten much better and some who are off the antivirals and are back to work, back to life and have drifted away from anything to do with CFS on the internet. I also have not had the experiences with him you mention. The patients that I know and see in his office praise him.

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  11. I suffer from CFS and exhibit HHV-6/8 symptoms. We all know its the HHV now but anyone that admits it publically is shot down. Even though I'm clinically trained, I still have trouble getting access to anti-viral medication because my viral load is "not high enough". My case is a little different since I have to work during my unbearable infection episodes. Our old-school staff physicians don't seem to be alarmed. Recently I have found that I am now capable of transmitting these symptoms to my co-workers. If find this horrendous but this is what has been chosen for us by the folks at NIH. Since this is contagious it is only a matter of time before someone from NIH gets it. 50 years from now people will compare our treatment of CFS to use of lobotomies with mental patients. I am disgusted by the people in my profession.

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