Tuesday, July 27, 2010

InvestinME DVD - Pia and Richard Simpson

It has been two months now since the May 2010 InvestinME conference. The receipt of the DVD makes me want to reflect on this organization InvestinME that you can read about here and the guiding lights of this organization Pia and Richard Simpson. These people deliver the goods and they should be more celebrated for bringing cohesion and clarity to the research field of ME/CFS.

Today I received my copy of the DVD from the May 2010 London ME/CFS conference. Even though I attended this annual conference (for the fourth time) I was excited to receive the DVD - and receiving it reminded me how very exciting this conference is - and I want to thank again Richard and Pia Simpson's selfless efforts for bringing us this information. I watched with fascination the round table discussion of the speakers that took place the afternoon before the conference. This year's speakers - John Chia, Brigitte Huber, Judy Mikovits, Annette Whittemore, Paul Cheney, Leonard Jason, Jonathan Kerr and Nancy Klimas - gathered for an hour and a half and discussed pertinent issues. The conversation was moderated by Malcolm Hooper. Dr. Hooper is excellent at guiding a group conversation and/or a series of lectures. His mild mannered yet focused personality brings a collective sense of harmony. He is also not devoid of an excellent sense of humor, a quality that I insist on in a "real person". (If one were convinced that moderating a lecture series is not a particular and delicate skill, one only need to have attended this conference several years ago when a quickly forgotten personality did this job in a quite poor fashion). Yes I like Dr. Malcolm Hooper.

All of these people are becoming like old friends to me - and my admiration increases on seeing them in action in a group conversation. I have less of a kindly feeling about Dr. Huber, but, as others suggest, this might just be me. Others have suggested that she is another point of view - so we will just leave it at that. I will try to restrain myself from revealing further information about Huber that indicates more clearly why she is unwelcome in the large and diverse (and expanding) group that secures my admiration.

Jonathan Kerr was missing in this group conversation, Cheney came late, and Huber left early.

Of course one could piece together some of the conversation's content from the next day's public lectures (and I did), but there is nothing like an extemporaneous give and take by very sharp and articulate people. I recommend trying to get ahold of a copy of this DVD and watching the round table discussion particularly. It is quite revealing and one can get a very quick sense of the personalities and issues involved.

This fellow Leonard Jason has done so much good in insisting on clarifying the language surrounding ME/CFS. His studies, which are carried on by "his group" (himself and a few graduate students) at DePaul University are not medical studies as such but more language studies - and the defining of terms. Dr. Jason is less interested in agreement, more interested in clarity.

In viewing this round table, it seemed to me that Cheney, Klimas, Jason, Chia, and Mikovits were all talking about the same subject. Their opinions of course differ but there is a willingness to listen to each other and to acknowledge the existence of the others. With Huber, it was slightly different. It is obvious that she has no clue about this illness or the patients who suffer from it. Whether this is necessary for scientific research, who knows? - but it certainly must have some bearing on who one includes in a particular study. Huber was invited to this conference because of her interest in an endogenous retrovirus HERV-K18 and its association with ME/CFS. My feeling, for what it is worth, is that it was a mistake to invite Huber, and that she brought nothing of use beyond being a foil for Mikovits. This in itself proved to be exciting, but I am not sure how much it moved the situation along. In this roundtable Huber mentioned more than once her idea that Mikovits' samples were contaminated. This, in itself, took her out of the conversation. I think Huber could use a few counseling sessions with Dr. Jason.

Many other interesting subjects were discussed in this forum. Naturally XMRV was the underlying theme. Another long discussion focused on biomarkers. Many ideas were generated. Among other things Cheney advanced his belief that "oxygen toxicity" was a foolproof biomarker - and that testing could easily be done in any cardiologist's office. At the moment no one else has picked up on this, but I have a strong hunch that this is about to change.

In watching this DVD, try to remember that InvestinME is not a large monolithic entity with tons of money. This fly by night organization patches together funding from various sources. This conference, this DVD exchange of information, is brought to us by the efforts of a very few generous souls. It is important to remember this - that most efforts in ME/CFS are philanthropic and visionary efforts by a very few individuals, working alone and working very hard. We all benefit from these efforts. It is difficult to express enough thanks to these people.

All of this, the conference, the roundtable, the DVD, is brought to you by InvestinME. This conference is the brainchild of Richard and Pia Simpson. The Simpsons have two female children with ME/CFS. They have taken it upon themselves to do what many of us wish that we could do. They do not stand around wringing their hands. They take on the problem directly, and in a country where this illness officially does not exist. The Simpsons have developed a means where they could consolidate the most articulate and serious research. Not enough credit is given to them.

In viewing this DVD I am reminded of my very great admiration for this couple and their most successful efforts to bring researchers and clinicians together. Nothing else is like this conference.

Over the years I have heard many fine physicians and researchers give presentations: Kenny de Meirleir, Jonathan Kerr, Sarah Myhill, Garth Nicholson, Dan Peterson, A. Martin Lerner, John Chia (three times), Leonard Jason (several times), Byron Hyde, and various researchers from Norway, Sweden and the UK. For the last few years the conference has leaned heavily on US researchers and clinicians, indicating a sense that this is where research is consolidating. This conference goes a very long way towards establishing the serious nature of the illness and demolishing the distinction between the American brand of CFS and the UK ME. This conference assumes and sanctions the older term of ME - no bullshit here.

This DVD lecture series is loaded with excellent lectures. I would recommend especially Paul Cheney (too short), John Chia, Mikovits and Leonard Jason.

Putting together this one day speaker panel is difficult, especially since decisions have to be made months ahead. It was great to see Cheney in the UK and I would like to see him come back for another year and be given more time to speak. Anything from the WPI and their growing affiliates is okay with me. If I were going to make one suggestion it would be to invite Dr. Joe Brewer. He is noticeably missing from conferences in general and yet he (along with Montoya) is best poised for near-term treatment. Dr. Jose Montoya would be another person worth including. I also like Dr. Dale Guyer, but he is on the periphery of the ME/CFS field.

The one day format of this conference is hard-hitting and intense. It is a long day. For the speakers and others concerned individuals the communication occurs on the day before the conference both with the round table and a dinner. The speakers are put up in the same hotel. In this way, communication amongst the participants and others is encouraged. I myself have observed numerous serious conversations going on in the hotel and at the conference during breaks and lunch. It is a great idea to get these people together and have an informal go at each other. InvestinME has done a great service in facilitating such conversations.

This conference is quite different than the conference in the US. In the first place the US conference is every two years, which is not often enough Additionally the US conference tries to covers too much ground, presents too many lectures, including a great deal of academic cannon fodder. The conference participant has to wade through a tremendous amount of crap without any clarification, and this goes on for four days. The Simpsons at InvestinME (probably because they are not a committee and do not have competing interests) have the courage to define the program, and to present something that is hard-hitting, up to the minute and practical. With a little more money and a little more help, maybe they can expand their efforts to having a conference every six months. Vast amounts of money would have to flow in their direction and the opposite is more likely. For the moment, check out this DVD and consider what these two individuals have brought to us for our betterment. (And it is worth noticing that they do not charge you $300 for this DVD.)

Lest I overlook someone in this fine organization I want to include a link to other organizers and contributors and congratulate them all on their fine work.

It is worth remembering that InvestinME came to the rescue after Jonathan Kerr blew a tire on his XMRV study, pledging to work in cooperation with the WPI on XMRV in UK patients, Funded by the modest pledges of this organization, a study was proposed to look for XMRV using the methods of the WPI. InvestinME clearly understands the legitimate ME/CFS patient population and we can expect some decent results from this study. InvestinME announced this support in March and three months is an adequate time for a study to be completed. The Patient Advocate looks forward to these results, but wonders why patient-driven research is necessary in this situation.

Wednesday, July 21, 2010

Stand back - wall collapsing

The NIH study is soon to be released.

Many things are coming together this next month. While there have been delays (and they are incredibly irritating), there is now a "great convergence". One confirmation study is about to surface - and there will be others. (All that is needed to get the ball rolling is this one NIH study.) Right now the wall is falling over, and it is going to fall on the bad guys and crush them. Never has their been a more deserving lot. Little or no effort will be made to dig them out. Some will be out with shovels, adding to the pile.

In the next few weeks, a new antibody test will be available from VIPdx. The lab is taking its time and wants to get this right. This in itself will be the best "confirmation study" - as increasing numbers of ill patients will test positive for XMRV. The test will be exported to various other labs, including Redlabs in Belgium, where some culture testing has already begun. Most importantly, next month, the Whittemore Peterson Institute will be dedicated on the University of Nevada campus in Reno, Nevada. This is the first institute- a large and beautiful structure - devoted to research and treatment of ME/CFS and other neuro-immune illnesses. Finally ME/CFS will have a home - a physical center for treatment and research.

Very soon full attention will be focussed on XMRV - and on trying to establish its involvement or causality in ME/CFS. Research will accelerate. Treatment protocols will be designed and, in this manner, the causality of XMRV will be established (just as in HIV). Patients, in trials, will be given drugs or a combination of drugs - and their immune response and viral loads will be tracked. GSK, Abbott and other pharmaceutical companies will get involved and design their own trials.

Some doctors already think that existing therapies for XMRV are available - either through inhibiting the virus (or viruses) or through regulating the immune system - or most likely a combination of the two. Working out protocols will take time. This is no easy matter, but at least - finally - there will be movement in the right direction. And most important, research will broaden and consolidate in ways that are hard to imagine at this time.

As one CFS clinician says regarding XMRV: "This is it! This is what we have been waiting for."

(No matter what one thinks of Harry Reid as a politiician, there is one certainty. Harry Reid is the best friend of CFS/ME in the United States government. It is fair to say that without Reid the WPI building would not have been built and that perhaps XMRV itself would not have been discovered. Harry Reid is currently in a close struggle with a Tea Party challenger. Anyone in Nevada who has CFS/ME, or knows anyone with CFS/ME, had better think twice before voting to oust Reid. It was no coincidence that Obama was in Las Vegas last week (campaigning for Harry Reid) on the very day that news arrived that the Alter study would be released soon. One can surmise that Reid and other Nevada representatives were in meetings last week shortly before this with the HHS regarding the absurd "scientific hold" of the NIH study. One can imagine the shuffling and stammering of the CDC scientists as their fingers were held to the flame. The shortest and most believable story is that Obama, on hearing from Reid of this pathetic move at the CDC, made a call and got the HHS "off the pot". Someone really jumped fast on this one - the clearest indication of an unexpected call "from the top". "Hey douchebag, the boss man wants you!")

Friday, July 16, 2010

Amy Dockser Marcus - an unusual journalist

My original intention of writing this blog is as stated in my profile. I want to write about particulars - the nitty gritty - that might benefit other Patient Advocates (or patients) who are dealing with CFS/ME. I hope to get back to this soon. In the meantime, events in the real world of CFS/ME research have overtaken my Patient Advocate world, and I feel compelled to write about them. I see these recent movements as being key to a clarification of this illness and of how it has been treated - really mistreated - for the last 25 years.

Late in the day on July 15, 2010 a blog was released by the WSJ about the webinar yesterday on XMRV. It was written by Amy Dockser Marcus.

For those who follow the discussion closely, yesterday's webinar itself was not very illuminating. (Vincent Racaniello was dead wrong implying that treatment possibilities could take 15 years - and he did a great disservice to throw that figure out there. Is he an idiot?)

The fact that an article was written about the webinar was remarkable. Someone is following this situation closely. Very little is written in the mainstream press about CFS/ME. The occasional stories are characterized by having 15-25% factual accuracy. Instead these articles, written by "unformed" brains, spread a great many falsehoods, often discounting the benefit that the article might bring. Most reporters do not understand the nature of CFS/ME, nor do they have the capacity to "care". So they write shit.

This gal Amy Dockser Marcus is different. Like many WSJ journalists, she can write. As a reader of newspapers (As Baby Doll said, "I am a magazine reader"), I know that the trade of journalistic writing has deteriorated rapidly and that serious practitioners are difficult to find. This particular person - Amy Dockser Marcus - has written a number of times about CFS/ME. Her articles on CFS/Me can be found here and here and here

All of the articles shape the subject in a serious and measured fashion, with a high degree of articulateness. They are written in a fashion that allows for "follow-up" stories as the drama unfolds - and in fact these follow-ups seem to be arriving regularly.

Some of us already know where this story is going.

Please pay particular note to the "comments" on these articles and blogs. Serious writing evokes serious responses. It is worth noting that CFS/ME patients and their advocates are extremely knowledgeable and forthright in their articulations and criticisms of journalistic reporting. There is much to be learned from this patient population and their ability to frame out the problem - and Amy Dockser Marcus does not seem above learning from them. She is open to suggestion. One wonders why?

Today I decided to find out more about this person. Who is this gal who has written more than once about CFS/ME? Is she for real?

What I found in Google was remarkable. Amy Dockser Marcus, a reporter at The Wall Street Journal, was awarded the 2005 Pulitzer Prize for Beat Reporting for her coverage of the physical, monetary and emotional costs of cancer. The list of her articles that lead to this award can be found here.

At this point her background gets even more interesting. Amy Dockser Marcus has written two books. The first one, published in 1997, is The View from Nebo: How Archeology Is Rewriting the Bible and Reshaping the Middle East. The second, Jerusalem 1913 - Origins of the Arab-Israeli Conflict, which I immediately purchased, is here. A compelling interview with the author, here, tells you all that you need to know about the journalistic impulses of this woman. Read it.

Politics aside, the subjects of her books matches her interest in CFS/ME (and other unknown illnesses). In both cases you have situations where people's decisions, calculated or not, have profound implications on future events, and suddenly the subject becomes complex and difficult from all sides. It takes a bit of research to try to figure out what has happened, how things have gotten to this state and how one might get out of the problem. CFS/ME is a perfect conundrum for Amy Dockser Marcus -and the best thing about it is that there now is a "way out" of this illness. Amy Dockser Marcus is well poised to help in this regard and win herself another Pulitzer.

Amy Dockser Marcus has latched onto CFS/ME. This does not seem to be random. This reporter has the complexity and clarity to follow up on the story and report the main points with accuracy and compassion. CFS/ME is sorely in need of such journalistic objectivity. By nature, Amy is attracted to complex issues requiring both emphathy and detachment, two qualities needed to get at the heart of complex issues. These few articles in the WSJ have done more to advance the cause of CFS/ME patients than any other journalistic writing that I have seen, excepting of course those of Hillary Johnson, another remarkable gal.

Saturday, July 10, 2010

1996 Prime Time report on CFS

In reading this morning I came upon this video posted by ixchelkali on the Phoenix Rising message board. Surprisingly I had not seen this before, but it struck me as something important to watch at this time. I decided to post it here for those that might not have seen ixchelkali's post. I thank ixchelkali for this reference.

Primetime from Barborka on Vimeo.

Friday, July 9, 2010

The Big Squeeze

The Patient Advocate was pleased to read the announcement on the CAA site that the NIH study would be published soon. This is very good news. The Patient Advocate has formed his own conclusions. The CDC blundered badly in withholding this study. It was a desperate and demented act, indicating a serious imbalance in their sense of reality. Their idea that the NIH should test the CDC samples was an equally dumb idea, designed to delay the NIH results as long as possible. This unprecedented and tangled form of testing is obviously not now going to happen. Provided that this CAA report is accurate, it appears that the CDC, or more likely "higher ups" in the HHC, have temporarily come to their senses. After a short delay the NIH paper will be released in an unmolested form.

These types of reversals do not "just happen", or occur in a vacuum. What happened? Someone had a little "sit down" with the CDC (each person can imagine who took part in this meeting) and the Big Squeeze took place. Reality took hold - and the HHS caved in - obviously realizing the consequences of trying to hold up an important paper like this. The choice that the CDC scientists faced were not without consequences - and we can imagine that they were one of two items: either a class action lawsuit or a House investigation. This science stuff is serious business, especially where truth is in the balance. One can imagine that the CDC scientists performed poorly once the questioning started and they actually had to answer something. If this report from the CAA is true, the CDC got rolled on this one, and the sequence of events indicates that CFS/ME has staunch advocates and battlers who will defend our interests. This is my belief and has been so for some time now -in spite of the momentum looking as if it were going the wrong way. Hopefully now the science can move forward and those interested in the direction of recent research, not only at the WPI, but at other labs (with additional labs to come), can enjoy a more positive flow to events.

Saturday, July 3, 2010

Everything reverberates and gains value

I worry about the patients with this disease and that they will get discouraged with the CDC publication this week. I take seriously the idea that the stress of this week's news will drag the patients down. I would like to do my best to reassure them that this week is a small blip on the screen, and that the situation will turn upwards in the near future. The momentum is on the side of serious scientific research.

The situation in the past few days is convoluted. The CDC is playing a losing hand and are going to get rung up. There are so many flaws in their study and, by the way, who publishes studies with no results? These CDC people are demented - and desperate. As far as I know, the CDC and NIH are parallel organizations, both under the HHS. How the CDC was able to muscle the NIH I do not understand. It must have been in conjunction with someone higher up. Regardless, what they have done is unprecedented. The CDC obviously have intimidated Dr. Alter and his publisher into not releasing his paper. There is no logical reason why this paper should not be released. In blocking the NIH paper, the CDC has stepped in a big cowpie - and they are going to have their little noses (and other parts) pinched hard. A confrontation is going to happen. In the meantime, the CDC somehow has gotten the NIH to agree to test the lousy CDC samples with the NIH protocol. What else could they be testing? - this is so obvious. Most likely Dr. Alter was forced into this position. Who has ever heard of such a thing? Dr. Alter himself obviously also "has never seen anything like this". This phrase is becoming repetitive. This is not science, this is shit. Who in their right mind would trust the CDC with anything? Even Suzanne Vernon, one of their own in the good old days, says they deliberately cooked the books. Amazingly Reeves' dirty fingerprints are all over this one, even from beyond the grave (or wherever he is). All this is immensely bizarre and indicates that the CDC is playing hardball, even if they are not very successful at it. We live in the Age of Stupidity and these folks at the CDC are in the vanguard. As reported today by the WPI, the CDC was given 20 positive samples by the WPI prior to the Science paper. Obviously, the CDC got zero positives with their test, zero for twenty. At this point the CDC did not question their methods and plunged ahead, blindfolded, over the cliff. Someday, and let us hope it is soon, this is going to make an unbelievable and incomprehensible story. In this instance real life trumps imagination. No one could think up such absurdities.

Meanwhile it has to be made clear that nothing has changed at the WPI. They are continuing their research, their new and better XMRV test will be validated soon (within days if not sooner), the evidence is overwhelming that XMRV is implicated in CFS, in six weeks, the Center for Molecular Medicine and the WPI will be dedicated, and various other entities and countries are interested in the XMRV/CFS connection. This is not going to be a repeat of 1992.

Mikovits and the Ruscettis applied for a patent on July 1, 2010: http://www.faqs.org/patents/inv/1017833

There is one thing that I could never quite understand about the October study. The results in this study were reported by three independent labs. I always thought that this study in itself included a "confirmation" - in that it was undertaken and reported by three separate labs. No one ever does this in studies. Perhaps someone can explain to me why the October study, in itself, was not a confirmation? (Did the WPI make a tactical mistake by not having the study only include themselves and the NCI and let the Cleveland Clinic report a second "confirmation" study?)