Saturday, March 26, 2011

Dr. Mikovits in the Big Apple

Regarding the Whittemore Peterson Institute, the news from NYC is strong and clear. The WPI is moving on to treatment, and treatment trials, and drug investigation for ME/CFS. Treatments will revolve around inhibiting pathogens (XMRV and other retroviruses in this family), regulating or strengthening the immune system, and dealing with co-infections. They have various tools at hand to begin this - with more to come. Through their research program they will continue to build data around this disease - as well as research better diagnostics and markers.

None of this is a big surprise.

The Whittemore Peterson Institute are putting the struggles over "contamination" issues behind them and moving on. Frank Ruscetti said in December that it is time to move on. It has been a long series of delays, and the WPI is now insistent on getting to the next level.

A few days ago the Whittemore Peterson Institute issued a press release announcing a change in positions at the top of the organization. "Dr. Mikovits, current Research Director of the Whittemore Peterson Institute, has been named the new Director of Translational Research. In this capacity she will focus on assisting its strategic partners and collaborative translation of the most current research. She will engage in activities which support and promote the development of more effective treatment for all patients with neuro-immune disease." Dr. Vincent Lombardi, the lead author on the Science paper, will be the new Research Director. Dr. Mikovits and Dr. Lombardi have worked together in the research lab for many years now. The mild-mannered Lombardi is fully capable of running the research lab.

Those who are skeptical of this institute and its research might view this change in positions as a rearranging the deck chairs on the Titanic. I do not see it that way. I see it in quite the opposite light. This is an aggressive move to escape the "current trap".

Dr. Mikovits has long had a desire to get into the "translational" aspect of this illness - searching for and testing treatments - based on existing and emerging knowledge. This new position will afford her a better platform from which to do this, one from which she will hopefully take less "flak". It also puts to direct use Dr. Mikovits' extensive past work in drug development. Dr. Mikovits directed the Lab of Antiviral Drug Mechanisms at the NCI, and then served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences.

On Tuesday March 29, 2011 Dr. Mikovits spoke at the NYAS's "Pathogens in the Blood Supply" conference. Her lecture can be seen online here. It includes a number of new items and covers a lot of ground. The main points of this lecture and discussion are found on various blogs and messages boards - or by watching the video.

In delivering this lecture, Dr. Mikovits seemed more agitated than I have seen her before. She rattled along at her fast typewriter rate. Recently her time slot was shortened in order to add more speakers (Why??). Dr. Mikovits has a great deal that she needed to present, so it seems that she just compressed it into the shorter time period. The talk had this sense of urgency to it. It also might be that she was anxious because of the setting, the hornet's nest of the east coast establishment, with the "Great virus hunter" Dr. Lipkin sitting in the first row. Having seen Dr. Mikovits in other extremely stressful situations, I tend not to give this interpretation any credence. I have never seen her get rattled. Instead I think that Dr. Mikovits was angry - and exasperated that she should have to be giving this talk at all - having to present this data again, and to what can only be seen as a skeptical and detached audience. After all, Dr. Mikovits has many more receptive places to present her work, and increasing numbers of interested scientists, and her invitations to present are growing.

Dr. Ian Lipkin also gave a talk. Dr. Lipkin's talk was quite interesting in general, but had various curious aspects to it - not the least was his statement that he is an "Agnostic" in regards to his position on the NIH trial that he is overseeing. Not being a post-modern relativist, I do not understand Dr. Lipkin's detachment. There are many more humane ways in which he could frame his neutrality, but he seems to be unaware of the moral issue here. Meanwhile a host of patients continue to suffer. I wonder if Dr. Lipkin has a clue about this disease? He seems a clever enough guy, but where is he going to take this, with his "Agnosticisms"?

The struggle over XMRV is a struggle over a larger issue. XMRV is a screen. The larger issue revolves around the WPI's attempt to compile data on this illness, to find an etiology, and to search for treatments - elements that have always been "disallowed" in this illness. These facts are so painfully obvious as to not even need to be stated.

The WPI has recognized this "strategic problem" or "lack of coherence" from their inception. They have noted that there has been no attempt to establish the history of this disease, no significant data accumulation that can be used for research or treatment, no real attempts at etiology, and no sustained research that strikes at the center of the illness. Any observer who pays attention knows that these four items, and more, have been at the heart of the difficulties surrounding ME/CFS. In 2005, the WPI set out to change this, and with the publication of the XMRV paper in October 2009, they encountered very stiff resistance.

From October 2009, great efforts have been made to slow down the WPI. From early reports that the WPI was going to be "taken out", to ongoing tactics regarding various contamination theories, to cutting off funding, these "paralyzing" tactics have been very successful. The WPI has spent a great deal of time - too much time - since October 2009 defending themselves. This has nothing to do with "science" - this is shit. These tactics have manifested themselves in a wide range of maneuvers, some of them predictable, others not. The objective observer has to admire those who set up these obstacles. They are very clever, devilish and persistent in their designs.

The overall effect is that the WPI is frozen out of grant money, younger people wanting to do research in XMRV are being denied research money, older researchers are flinching under the pressure of being shut out for their interest in XMRV. The grant application process has become allergic to XMRV research. Someone somewhere does not want this to move forward.

Academic research is a money game. If you play the game wrong, or if you play another game, you are on your own and suddenly without any funding. It is all a bit unseemly. At least being an artist, your livelihood is not connected to kissing people's asses. As an independent artist you can do whatever you want, at your own pace, guided by circumstances. It is much more difficult to do this in science (in other words, there are no William Herschels), and most scientists are cowards when it comes to the money thing. To them this is serious business - as it involves their livelihood - and their "self-realizations". I am sorry to have to say this, but it is true - such is modern life.

All of these "contentions", all of these struggles are "advertised" in the press (to the extent that they cover ME/CFS at all). It is important to remember Dr. Conant's admonitions, "Do not trust the press" and "The press is not your friend".

One can flip a coin about what this is all about. First, it is to "take out" the WPI. Second, it is to "take out" the WPI and reinvent their discovery for themselves. Take your pick. I go with the second option.

The message is clear. The WPI and those supporting XMRV can expect no help from the government in the foreseeable future - if ever. The WPI are going to have to move forward on their own with private funding. The government's current "involvement" seems to be to "embrace" the WPI with testing probably hundreds of samples to clarify what the WPI already knows ("The Big Squeeze" that suffocates.). This could tie up this small lab for many months, critical months for starting the investigation into treatment possibilities. This is not an acceptable option. While this work might be seen as "necessary", it should not come at the expense of immediate attempts to treat these very sick patients. In this light, it is impossible to accept Dr. Lipkin's "Agnosticism". It is a dead end for those who want to bring relief to this patient population. This is a "moral issue", and somewhere, somehow the moral structure has broken down.

Out in the real world, the "agnostic", detached world, ME/CFS is not recognized as a disease. A serious history of the illness has never been presented. There is very little or no data that is useful on the illness. There is no serious search for etiology. There is no serious research into the infectious nature of this illness. There is very little research into the immunological dysfunction. The illness is presented as confusing, complex, and mysterious. (What infectious illness was not confusing, complex and mysterious prior to being understood?) In the meantime many patients are seriously sick with this illness (Notice that Dr. Mikovits referred to it as an "acquired immune deficiency".) In 2005, along comes the WPI with a desire to cut through all this crap. Their first big strike, unexpected, occurred in October 2009 and touched an exposed nerve. For the last 18 months we have experienced non-stop negative reverberative vibes (Unfortunately these "negativities" extend to the patients. Why so much hostility and disregard?). None of this is so difficult to figure out. Please connect the dots.

From the WPI's perspective, their original hypothesis still stands, and no one has made a dent in it. They are making new and additional friends. They have the courage and the momentum - if not the money. There is an air of inevitability here.

Mikovits: "I am totally confident that XMRV and a family of human gamma retroviruses is playing a role in ME/CFS.....(and) our reorganization reflects confidence and allows me to move forward drug and diagnostic development."

There is a lot more I could write about this, but for the moment I will leave it at this.

Tuesday, March 22, 2011

"What the boys want, dad, is clarity"

One of the positive phenomena of the last few years is the number of clear and strong voices that have emerged in the ME/CFS community. It seems to be ever increasing - whether by blog, comments, articles, or message boards. Each of us has a part to play in this unfolding drama - and it is a healthy sign that this great stirring has happened. (Check out the responses to Amy Marcus's articles.) I attribute this increased "activity" solely to the October 2009 paper from Vincent Lombardi and Judy Mikovits of the Whittemore Peterson Institute. This paper has sharpened and strengthened the voices of the patients with this illness.

These voices strive to bring clarity to a decades-long deliberately scrambled ME/CFS mess. This is going to take a lot of work, to untangle this mess, but I think it is possible if we keep at it collectively.

When I am in Philadelphia, I will meet friends at a local coffee bar. These friends are often ME/CFS patients. We will sit around a table for an hour and have a lively conversation. Occasionally, among those with ME/CFS, there is a moment of cognitive shortcoming, where an individual has difficulty grasping for a word or an idea. While this is usual for someone my age, these people - men and women - are younger, and this abnormal "brain fog" goes with the territory. Otherwise these wonderful friends seem "normal" - lively, engaged and engaging. In this group, the morose introverted artist (me) is the one that looks sick.

I will get up from the table and head out on my bike, doing my errands, The others in the group, those with ME/CFS, will go home and lie down for two days. "Going out", doing anything, takes a big toll on these patients. They also do "preemptive" resting in preparation for a modest social occasion. It is worth pointing out that these are the "well patients". These are the patients that doctors see in their offices, when the patients make their best "presentations". These are the patients who can go to "part of a conference" and then spend a week or two in bed. The face of ME/CFS doesn not reveal itself in public very clearly - and this is a large part of the problem of communicating the true nature of this illness. People at large see these patients - and they "look pretty good". Looks are deceiving.

What can we do about this? If the public face of the very serious illness does not reveal itself (think AIDS , think Parkinson's), how does one present this illness? (It is not sufficient to show a person lying on a couch or dropping dishes.)

And what about the others - what about the really sick ones?

There is really one one way to present this illness, and it needs to be done more often. The face of this illness lies in the presentation of the severely ill patients. This is one of the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to make this video, visually and audibly describing her condition. This courageous and heartrending video that has so much power and dignity. We need to see more of these kinds of videos - images and pictures of the severely disabled. This is where the visual information lies - down near the bottom.

"Walled up":
Imagine a patient who cannot stand, who has extreme fatigue and must live a horizontal life. Imagine a person who is functionally blind from light sensitivity and eye muscle fatigue and wears a blinder 24/7. Imagine how this blindness might further limit this person's ability to move. Imagine this person with sound sensitivity so bad that they have to wear earplugs or sound blocking earguards. Imagine a person whose skin is sore and sensitive to the touch. Imagine a person who cannot focus their thoughts, has short term memory deficit, or can't speak clearly because of neurological deficits ("brain fog"). Imagine a person who has seizures, spasms and twitches. Imagine a person who has lost their sense of smell - or has hypersensitivity to smells. Imagine a person who cannot speak, or cannot speak above a whisper. Imagine a person with a feeding tube, IV medication, and oxygen. Imagine living in a world where things coming in and things going out don't happen. Take a good look. This is ME/CFS at the core. My friends in the UK call it ME. It is worth noting that all other ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.

Incidentally these patients have measurable abnormalities that characterize the illness.

Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 2008. It gives the clearest picture currently available of this illness, and is the most valuable resource for coming to terms with its reality. Otherwise there are various videos on youtube made by patients, and by the providers of these very sick patients. Many of the older videos that I viewed years ago, ones that were quite frightening, have disappeared off the internet. Soon we will have additional contributions in this area, and they will be welcomed for what they are - clear documents of the core of this ME/CFS illness.

This, of course, is not an easy subject. It is a delicate issue - this severe private illness that takes place in darkened rooms - and from many points of view. But I think we have to have the courage to put pictures and videos - with clear explanations - out into the world in order to show the serious consequences of this illness. This illness needs a face, a real face.

I was in the conference hall in London several years back when Dr. Kenny de Meirleir showed videos of desperately ill, bed bound patients in Norway. The video was extreme, showing a patient lying in a bed in a darkened room, with a feeding tube, wearing a blinder and ear protectors. The sheets were suspended above the patient due to intolerance of the weight and pain of the sheets. It was a riveting, terrifying video, an image straight out of Dante. At the same time, Dr. de Meirleir had a young women speak about her "walled up" sister, who she had not seen in four years, even though they lived in the same house. It was easy to sense that this presentation shocked the audience, an audience consisting of patients or those familiar with the illness. It was as if Dr. de Meirleir had done something inappropriate. But for me, it was a revelation, and that moment has percolated in my mind ever since.

How can this illness be presented to the uninformed - doctors, researchers, journalists, friends and families - in a profound way? I think you have to go "to the core". It is like going inside of the smashed nuclear reactor and viewing the exposed fuel rods.

Certainly, at the moment, the face of this illness has not registered with the public at large, and listing a long list of symptoms is not going to cut it. I want a video in my hand that depicts the "very bottom" - a video that I can hand to Dr. Harvey Alter and say : "Dr. Alter, take a look at this." - and hand it to any number of people with the same intention. There is a need to provoke people into the recognition of the true devastation that this illness inflicts on patients - and caregivers.

My daughter suggests "before and after" video stories. This also could be adapted to written stories. These stories would have to be done on the right patients, ones who can be well documented in a manner that the public will understand. Stories in this arena would most likely lean towards doctors, nurses, lawyers and other professionals whose lives have been shattered. It is my judgment that their stories would be easier to tell and more understandable in the society in which we live. This should not be seen as a value judgment, and I am open to suggestion here.

Confirmation of the power of this "before and after" treatment was driven home to me this past week by satellite pitchers of the vast destruction in Japan. These photos are very powerful and convey in an instant what needs to be applied to this very serious, debilitating illness of ME/CFS.

This is what was, this is what is.

Monday, March 21, 2011

Biological Causes by Amy Dockser Marcus

No sooner do I finish considering one article by Amy Dockser Marcus than she has published another one. This journalist is really pushing the ME/CFS story along. This time the article seems to me to be much more focussed and readable. Personally I like seeing the name of Dr. Jose Montoya and that of the Utah group, two of the relentless researchers in this illness. Serious information is presented here, leaning on the various approaches scientists are taking. Particularly helpful is the effort from many directions to find an infectious agent - which many people have known is there, and for many years now. It is about time for a serious effort to identify the agent or agents. The character of the illness points to a retroviral involvement. Noteworthy amongst them is XMRV and its family of retroviruses. Dr. Montoya will consider other pathogens -HHV6, EBV - until they lead him to something else. He is open to suggestion, and it is just a matter of time. He is a terrific clinician/researcher.

Amy Marcus was a little weak on the disease definitions, leaving out a very important piece -the Canadian Consensus Criteria. When this is applied, the diagnoses is not vague or mysterious. When this is applied many negative XMRV studies would not exist. She also leaves out the development of cytokine/NK cell panels that clearly determine a pattern of profoundly dysfunctional immune systems in these patients. At least three different places are working on these arrays. I think it is also important to emphasize that people can get better - but they do not "get well". Personally I never could understand this "waxing and waning" idea, as it is like many illness - they cycle. This "symptom" is not helpful in characterizing these patients.

Personally I look for these articles to be "useful" to me and my daughter - and I deem this one to be so. What this means to me is that I can send it out to everyone that I know, knowing that it will add in a mostly positive way to their growing involvement with this illness. Some months ago I decided that I was tired of people dropping me off their schedules (as if I were dead) and not being able to understand or seemingly be interested in what my daughter is going through. Dropping the anger, I decided to contact everyone I know - family and friends - and give them the "short skinny" on ME/CFS - and, perhaps most importantly, to set them up for future information, as this disease drama unfolds. Incidentally I also used this "educational" effort to solicit modest gifts (for the Whittemore Peterson Institute) from family and friends, about 100 people so far. The results have been surprising, and I will write about them soon.

Sunday, March 20, 2011

The Shell Game

I reread the March 12, 2011 Wall Street Journal article that was written by Amy Dockser Marcus. Ms. Marcus has been covering this story now since June and she seems intent on continuing the coverage. I look forward to future articles. There is a story here. I have various objections to this article but I will let someone else articulate the major drawback of the article.

Two days ago a comment was posted on Dr. Speedy's website, reposted from the comments section of the WSJ and it deserves to be read - by anyone who is interested in a clearer picture of reality. (I do not know this person, but wish I did.) Why can't this writer DY write for the WSJ?

The comment follows:

DY:"I have great respect for Amy Dockser Marcus as a journalist and am grateful for her interest, and that of the Wall Street Journal, in issues regarding ME/CFS and the retrovirus XMRV. However, this latest article is seriously flawed. 

The basic premise of this article - that patients are pushing for faster research and impatient with the normal scientific process - is fallacious, and unfortunately is a complete distortion of what has really been going on. The reality is that patients haven't been pressuring anyone to make researchers "work faster", they have been pressuring government agencies for more funding of high quality research that is faithful to the scientific method. 

The main agency in charge of funding extramural research is the NIH, for which Dr. Le Grice works. Some months ago there was a grassroots patient initiative in response to the abysmally low funding ME/CFS research has received from the NIH for over two decades. In the light of the enormous potential significance of the XMRV/MRV findings by WPI, NCI, Cleveland Clinic, FDA and NIH scientists, it seemed all the more obscene that NIH funding for CFS continues to trail that for conditions like hay fever and erectile dysfunction. Patients during this brief initiative were emailing, calling, or faxing the offices of the director of the NIH (Dr. Francis Collins) and one or two other government health officials. 

Dr. Le Grice is reported to have complained to a patient during the CFSAC meeting at that time that he didn't need Francis Collins calling him up asking what was going on. He raised the same points then - that patients just didn't understand that they were (somehow) slowing down his research by forcing him to answer such phone calls or emails. This is an absurd argument, even on its face, and an obvious example of institutional spin. Neither Dr. Le Grice nor any other researcher was targeted by that patient campaign, and if he was contacted by Dr. Collins or other officials one wonders what the reason could have been, as patients did not ask to speed up existing research, but to increase funding of new research - not to harass any scientists, but to pressure government officials to finally give this disease, and a potentially causative pathogen, the funding they deserve. That campaign ended soon afterward and there hasn't been an organized one since; so why is Dr. Le Grice's complaint being featured now, months later, on the front page of the WSJ, as if it was (1) still relevant and (2) accurate to begin with? 

I urge Ms. Dockser-Marcus and other journalists who want to report on ME/CFS patient advocacy efforts and concerns to engage with a broader range of patients, most of whom carry out what advocacy they can over the internet; many can be found by browsing patient blogs, forums, and activist Facebook pages. Without such input, a journalist cannot get an accurate picture of what is really happening, nor of its proper historical context. 

Among other things, patients and their families have been clamoring for funding for the WPI, which has had several grant applications inexplicably rejected by an NIH grant review panel (which, by the way, includes a number of dentists and psychologists with no training in molecular biology, immunology or virology); without such funding, patients with limited resources have been struggling to scrape together relatively small sums of money for the WPI themselves. In this case and for ME/CFS research in general, the problem isn't one of science being prevented from taking its own time, it's one of science being prevented from taking place at ALL. In direct contradiction to the theme of this article, it is the patients who are the ones fighting - all too often against government resistance - to give scientists a chance to research this disease. The terrible underfunding of ME/CFS research, including the bizarre dismissal of WPI grant applications, is itself a scandal worthy of a front page article in the WSJ." 

The real question is why does a patient have to sort all this out - especially on a subject that is so basic. What is the disconnect here - and why? My answer? This is all part of a continuing "disinformation" trailing after this illness. Even those partial towards this illness have trouble seeing it.

ME/CFS is a complex, neuro-immune illness that is very likely infectious in nature, and is associated with profound immunological dysfunction. There is an existing means by which this patient population can be accurately identified -the Canadian Consensus Criteria - and cytokine/NK cell panels that can identify those with these immune dysfunctions. These patients have abnormal areas of white matter on spect scans, diastolic dysfunction, aberrant proteins in ttheir spinal fluid, viral activation, and most likely a retrovirus and perhaps more than one. These patients lead a non-life ("a living death") for many years and then die an early death, 25 years short of average life expectancy. The pattern does not vary much. Certainly some people get better, often transiently, but few people who meet the Canadian criteria return anywhere near to their former selves, especially if left untreated. I personally would like to meet one patient who has completely recovered from this neuro-immune illness. Some say that those who escape have gone back into society and gotten lost in the crowd. I say those who have disappeared are more likely to be six feet under or entombed in darkened rooms.

At the risk of sounding ungrateful, I don't think this article by Amy Marcus does the patients suffering with this terribly dangerous illness - like my daughter- any good. In fact I think this kind of article is better not written, because it's not true, as DY has pointed out. It's very, very important to report the truth about this disease, because there has been so much inaccurate reporting in the past.

The press (and others, including virologists) have a field-day presenting the current (and past) interest in this devastating disease as nothing more than an all or nothing pitched battle that pits patients against researchers, researchers against doctors, patients against patients, and researchers against researchers. This has been going on for a long time now, and seems endemic to the illness. For this illness to move forward, this particular brand of roiling attached to this illness has to stop. It is not an accurate picture of this illness world. Instead it is a fantasy/construct, designed to further marginalize this illness. It is fundamentally abusive towards the patients with this illness. Why are so many professionals not interested in this illness? Have they all taken the "poison pill"? Why is there so much hostility directed towards these patients?

From a journalistic standpoint, fishing around in these various cellpools of personality disputes does a great disservice to trying to develop a clear storyline. This disease is dangerous and debilitating and it is that subject matter that should draw attention - not this other crap. Any other presentation suggests some searching for less than the truth. In reporting this disease one has to take the extra time to not fall into the "shell game" trap. It has been around for a long time, and it is tiresome to see it again. In this case, it involves moving people's attention around from conflict to conflict so that they lose track of the truth of the seriousness of the disease and the importance of funding research.

Drawing from my own notes, I have this say about Dr. Le Grice at the CFSAC meeting:
I sat in the CFSAC room and had to endure the disingenuousness of Le Grice's performance that was laced with prejudices. He had a lot to say about "scientific work on what isn't, instead of what is". He seemed a ringer, proposing a research program for morons. I cannot imagine that he liked his assignment. I am sure he is a much more interesting man in "real life". However, our new dear friend Le Grice is right you know. Research does go slow. It takes time. Everything actually takes time. Sculpture takes time. Learning a language takes time. This we know - things take time. Dr. Le Grice tells us that much has happened in the past year and a half. Again Dr. Le Grice is correct. Much has happened. An amazing amount of things have happened. What Dr. Le Grice neglects to add is how many of "these things that have happened" are patently negative, designed to disrupt. How much progress could have been made if the science had been left to the serious people, and the meddlers had stepped back into their rat holes where they belong. Academia, including science, is a game, and there are those who play the game well - whether they win or lose. Thank heavens for these people. But there are others - and in great abundance in modern life - who do not play the same game. They play a new game, a game that was invented in the late 1960's, and which places short-term goals above long-term goals and rewards assholes. I am sorry to report this, but it is true. From Dr. Le Grice I need more information before placing him in one category or another. Certainly at this point, having seen him in action, I do not believe him. So let's just say that the jury is out on Dr. Le Grice and turn our attention elsewhere, and maybe for good.

Incidentally it is my belief that bloggers can say anything that comes to their mind. This is part of blogging. The best ones try to verify their facts. It is not a good habit for virologists to say anything that comes into their heads. Journalism is different - and journalist have to conform to a certain standard of behavior - and responsibility.

I would like it noted that I did not mention Judy Mikovits, Annette Whittemore, the Whittemore Peterson Institute or XMRV in this blog post (excepting in the quote, which was not me)

Friday, March 18, 2011

Dr. Marcus Conant, update

Dr. Marcus Conant was featured in a previous blog post. He gave an eloquent talk at the ILADS conference in Jersey City in October. This talk was received with great enthusiasm. An audio of this talk can be purchased here. This doctor shows up with hope in his hip pocket - and a helluva lot of moxie. Here is an article on Dr. Conant from the NY Times in 1992, written just about the same time that a retroviral association with ME/CFS was being sunk. This article gives a good account of this doctor's activism and devotion in saving people's lives. Everything recounted in this article about Dr. Marcus Conant was observed by this viewer at the ILADS conference. Dr. Conant is "all there, all the time".

Recently Dr. Conant has agreed to be on the Whittemore Peterson Institute's clinical advisory board.

This weekend Dr. Conant gives a talk at the HIV Opman clinical conference in Florida. The talk is entitled "The Association of XMRV with Chronic Fatigue Syndrome, Prostate Cancer, Autism and Transfusions". I had hoped to be able to film the lecture with my son Peter, but this did not work out. I look forward to hearing what Dr. Conant has to say.

Saturday, March 12, 2011

Laurel's testimony and video

In rooting around for Dr. Joan Grobstein's 2009 CFSAC testimony, I came upon once again Laurel's powerful video testimony from October 2009 CFSAC meeting. Perhaps there are a few new or uninitiated persons reading my blog this weekend. This is for them.

Also please watch this video on ME/CFS made by Laurel, ill and housebound with CFS for 13 years. It gets the major points across in a powerful, concise and beautiful manner. Laurel is the very best! Learn from her. Both these films are on youtube.

Dr. Joan Grobstein, continued

I have looked further and carefully for the video testimony of Dr. Grobstein of the October 2009 CFSAC meeting. It is no longer online. Many of the other testimonies and committee discussions are still available. (leelaplay supplies this: found it! Look under CFSAC Oct 29-30 Day 1. I think you need Real Player (and a free down comes up if you don't have it) Dr. Grobstein is the 5th speaker at 3h 35 min. Thanks leelaplay!)

On a related matter - sitting near Dr. Grobstein at the CFSAC October 2010 meeting - I could not help noticing that Wanda Jones would not recognize Dr. Grobstein for a question.

Here is Dr. Grobstein's written testimony, which she read at the 2009 CFSAC. It is different than the online version. It is a well known detail that those presenting patient testimony have to submit an sanitized version. At the presentation they then say whatever is on their minds.

CFSAC Oral Testimony October 2009

"Hello. I’m Dr. Joan Grobstein. I’ve been a physician since 1977, last working at Children’s Hospital of Philadelphia Division of Neonatology. I’ve had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1999. I’m a doctor and a patient. I‘m going to talk about science and ME/CFS.

To be blunt, scientific research on ME/CFS is a mess. Given how little time I have, I’ll focus mainly on the worst offender, the CDC. The CDC has underfunded and underinvestigated this disease since their initial involvement in the mid-‘80s. They’ve also failed to correctly define the disease. In 1994, they created the Fukuda definition, which is flawed but which has been used to define the CFS data set for fifteen years, resulting in a significant body of research. However, oddly, in 2005 the CDC redefined the data set. Perhaps they noticed research using the Fukuda definition seems to suggest physiologic explanations for ME/CFS symptoms. One wonders. In any case, using the new Reeves 2005 “empirical” definition, their estimate of the number of people with CFS in the United States suddenly jumped from one million to 4 million people. Basically, they created a new, unverified definition which defined a new, much larger data set, and they still used the name CFS for this very different data set. This is outrageous! This isn’t science--it’s a shell game.

Dr. Peter White was involved in a similar definitional misadventure in the ‘90s, also muddying the research waters. He helped develop the Oxford definition, which was actually a description of Idiopathic Chronic Fatigue, which is not CFS. Putting a prestigious name on a definition does not necessarily give it a useful meaning.

As Dr. Mikovits and her colleagues have shown so brilliantly in the past month, when researchers look at patients that meet the Fukuda & Canadian consensus criteria, they can quickly begin to discover potential mechanisms and possible treatments for this severe illness.

So how do we find our way out of this mess? We need to tidy up the literature, so we know when we’re talking about apples and when we’re talking about oranges. I suggest the following solution: Until we have a better name, call the cohort of patients who meet the Fukuda criteria: CFS-Fukuda; the Canadian Consensus cohort: CFS/ME; the Ramsey cohort: ME; the Oxford criteria cohort: Idiopathic Chronic Fatigue; and the Reeves definition cohort: Reeves’ disease. After removing CFS-Fukuda, CFS/ME and ME from the Reeves cohort, Reeves’ disease will probably consist of a group of people with Idiopathic Chronic Fatigue, various other undiagnosed conditions, and some, but not all, people with major depressive disorder. These people deserve study and treatment, but they do not have ME/CFS.

It is very important that any ME/CFS study published states in its abstract which group is being studied. A retrospective review of all previous CFS studies should be funded in order to determine what group of patients were actually studied. Research on Idiopathic Chronic Fatigue is not relevant to ME/CFS.

I suggest the following recommendations to Secretary Sebelius:

1. No taxpayer dollars should be wasted on ME/CFS research which uses the Reeves definition. All federally-funded research should use the Fukuda criteria & the Canadian Consensus Definition.

2. Abandon the CDC’s current proposed 5 year plan. Ensure that this Committee’s previous recommendation for a change in the CFS leadership at the CDC actually happens. The new leadership should propose a new 5 year plan which should then be reviewed by an unbiased panel. Meanwhile, make the taxpayer-funded data that the CDC has already collected available to all researchers to analyze.

3. If the XMRV connection to ME/CFS is confirmed, initiate a congressional inquiry into why Elaine DeFreitas’ research into retroviruses and ME/CFS was not pursued in the early ‘90s. Many people may have been harmed by this decision.


4. Increase funding for ME/CFS research. Patients and doctors need more information. Designated funding for a collaborative trials network is imperative, as is the retrospective review previously discussed.

I could say much more, but my time is up. I have submitted written testimony. Thank you."

Friday, March 11, 2011

Dr. Joan Grobstein

I want to consider Dr. Joan Grobstein once again - as what she says is so important. I don't pretend to be able to articulate issues as well as her - and I don't think there is a finer mind in analyzing the current situation with ME/CFS. Dr. Grobstein was a pediatric physician at CHOP in Philadelphia (forced out of work by ME/CFS), one of the finest hospitals in the world (I know firsthand.). Despite being sick for twelve years, she can still reach out in any situation and put her finger precisely on the pulse. It is unfortunate that she is so ill - as the good guys could use more of her insights and expertise. For the past few years Dr. Grobstein has struggled to make semi-annual trips to DC to testify before the CFSAC committee. (I tell her not to waste her time and energy. When was the last time that a committee - particularly a government committee - accomplished anything? The short answer is - never.) Dr. Grobstein persists in the face of this known reality, and here are several of her testimonies.

The video of her October 2010 testimony can be found here. On this HHS website Dr. Grobstein is identified as "speaker 2" - an Orwellian reduction of this very smart woman. This video is worth watching. Being a government website, it, of course, takes forever to work, if in fact it does work.

Here is a written statement of Dr. Grobstein's 2009 presentation. At the moment I cannot find the video although I am still looking for it.

ME/CFS is presented to the world, especially by the press, as an astounding set of confusions. The issues are not as difficult as they are made out to be. If one is seeking clarity, one can start here - with the Canadian Consensus Criteria. This 2005 CCC criteria gives an unambiguous basis by which ME/CFS patients can be identified. Who can't see this - and why?

Monday, March 7, 2011

"The other Dr. Peterson"

For some time now I have been wanting to write, as a matter of curiosity, about "the other Dr. Peterson". Dr. Phillip K. Peterson is Director of Infectious Diseases and International Medicine of the Department of Medicine at the University of Minnesota. Between the years of 1988-2000 he organized and ran a CFS clinic at Hennepin County Medical Center in Minneapolis. Hillary Johnson first told me of the existence of Dr. Peterson - in regards to my desperate and unsuccessful attempt to get a doctor for my daughter in MN. Dr. Peterson appears several times in Osler's Web, portrayed in a favorable light. I direct the interested reader to her incredible book. (Osler's Web is actually Hillary Johnson's second most incredible book, the first being My Mother Ruth:a memoir of love, loss and art. -

One of the things that I try to do is facilitate relationships between people on an individual basis. Dr. Peterson is at the end of his career, and no longer practices medicine with CFS patients. I have written to him, trying to get him to connect to the WPI, trying to solicite suggestions for physicians at the WPI clinic, but it seems my efforts are too little and too late - I think Dr. Peterson is out of the CFS business, now for many years - and for reasons undisclosed.

Dr. Peterson recently gave a Grand Rounds on CFS at the University of Minnesota, and this one hour lecture can be viewed here. I don't imagine that there are many Infectious Disease doctors giving Grand Rounds lectures on CFS at major universities. Perhaps I am wrong here. The lecture contains an unidentified CFS sufferer, a woman who formerly was a cardiologist and an avid rock climber. From the video it is obvious that she is "one of us". I wonder who she is? If anyone knows her, will they please contact me?

Some will find items to object to in this lecture. Others will be more forgiving, as Dr. Peterson was in on CFS as a clinician and researcher quite early and in a very serious way, combining clinical work with serious research. His group did a number of double blinded placebo controlled trials examining IVIG, florinef, and cytokines. His most important paper was a 1991 paper entitled CFS in Minnesota that documented functional severity of this patient population that was equal to heart disease and worse than various cancers and other chronic illnesses.

To me this whole situation is a little bizarre. From this investigation of Dr. Phillip K. Peterson, I am led to understand that twenty years ago serious work was being done in CFS in Minnesota. What happened? Where have all of Dr. Peterson's 390 patients gone? How come I can't find a doctor who will take responsibility for my daughter? I believe there are significant answers buried here regarding the larger and current CFS picture with which we are now dealing. I think these answers are in the details of those past years, but these details are not going to be revealed.

In a comment about the previous post - I appreciate the responses that I get and read them carefully. Generally I do not respond to comments, for my own reasons. However upon further reflections, with the comments of others in mind, I have found a partial answer to my own question of "Why", or "Why now"? It very well might be that both these authors rolled out what I see as "off topic" articles to blunt the effect of the PACE trial in the public's mind. Thanks. In this regard, I can see that these authors do have "my interest" in mind.

Sunday, March 6, 2011


Two ME/CFS articles (and more) were published in major American newspapers this weekend. The questions I ask are always the same. Why? - and why now? What are these journalists up to, and why are they so wide of the mark?

The first article in the New York Times was written by Mr. David Tuller. The article had a catchy little title, "Troubles of Chronic Fatigue start with defining it". In this article Mr. Tuller wrestles with the various historical difficulties of defining the patient population with this neuro-immune illness. In doing so he writes a long, convoluted treatise which effectively further confuses the reader. I defy any regular (average) reader to take anything useful away from this article.

The NY Times should encourage comments on these CFS articles. Various patients and advocates write terrifically articulate and reasoned comments. After all, they have "an attachment to the subject". My suggestion is that the NY Times should bypass Mr. Tuller and hire a few of these very sharp patients who write articulate and concise comments.

Mr. Tuller wrote what appeared to be quite a fine article on January 3, 2011. It looked promising that it had finally dawned on him (and his editor) that there was a journalistic story to be told. Optimist that I am, I thought that perhaps this would be the beginning of something different from the slop that they had been serving up for years. After all, many people read this newspaper. Instead Mr. Tuller has immediately lost the story line, and has veered off into the ditch. At best one could hope that his last two very weak articles are background filler to develop a more cogent storyline - but as of now, this remains only a hope. I am not holding my breath.

I asked myself what this article has to do with my situation and my daughter's? Nothing - it has nothing to do with either. This story is more about Mr. Tuller and his needs than any useful presentation concerning those suffering from this difficult illness. There are more forceful and honest ways to present the problem of characterizing this illness, starting with exposing the CDC's labeling this very serious neuro-immune illness as "Chronic Fatigue Syndrome". In a certain light this might be seen as a form of hate speech.

Over the years the various definitions of this neuro-immune illness have been constructed to disallow "neutrals" from being able to characterize or define the patient population with any consistency - thus interfering with any meaningful or exchangeable research results. This shell game has been going on for years. More recently, the Canadian consensus has narrowed and focussed the criteria to a meaningful set of symptoms that are sufficient and successful in identifying this patient population with great confidence. Yet, in spite of this, the confused and disingenous characterizations of this neuro- immune illness have been extended and sustained. Such is the effect of articles like Mr. Tuller's.

In reality, the problem of identifying ME/CFS neuro-immune patients is much simpler. I myself, a sculptor, can diagnose a ME/CFS patient in ten minutes with near 100% accuracy. Dr David Bell reiterates this idea that identification is not difficult, and he states that no other illness presents itself in this fashion. Why is this important piece of information buried underneath all this other crap in Mr. Tuller's article?

Repeat: NY Times should publish some of the better comments as the foundation of future articles. Not only will the articles be more legible, they will be much shorter. The Times could string together two or three of the best comments as the structural center of an article - and the general readership would benefit from having some clarity shown on the issue of disease definition - and other items.

Stirring this pot again is a dead-end, and it is unfathomable that Mr. Tuller would not know this. No - this is deliberate misdirection.

The second article, a full page and a half in the weekend section of the WSJ, was by Amy Marcus. Ms. Marcus has written a remarkable set of articles following this unfolding disease drama - the attachment of a retrovirus to this nasty illness. Here Ms. Marcus writes a human interest story that focusses on a real American hero, Dr. David Bell. Dr. Bell is a pediatrician who has dealt for years with a 1984 neuro-immune outbreak in Lyndonville, NY. It is a fascinating story, and Dr. Bell deserves every bit of attention that he gets for his great humane efforts on behalf of his patients and the rest of us.

And yet this recent article did little or nothing to advance the current, extremely important story line.

The big question is, why now? All of a sudden it is like 1991. What does this story have to do with the current crisis in research into this nasty and debilitating illness? Is this long article supposed to raise consciousness? If Ms. Marcus has a point, couldn't she be more forceful in presenting it? In this deadly "science" struggle currently going on, subtlety is not what is needed to advance the story line.

Interestingly, Ms. Marcus waits until the end of the article to say what she should have been said at the beginning - and which could have been the foundation stone of an important article. (In the first place 67% of current readership cannot make it to the end of any article.) At the end of her very long article, Dr. Bell states his greatest fear (and mine too):

"The picture (of deFreitas) reminds him of what happened in the past, when conflicting studies caused scientists to lose interest in the retrovirus. 'My greatest fear,' Dr. Bell says, 'is that people will throw up their hands and say they are not going to pursue it.'"

Some are happy with any journalistic coverage of CFS. I am not. I hate to say it, but I think we are going in circles. What I see is a recycling of past confusions and past stories.

What we need is some journalistic clarity - and a bit of courage. Is it necessary to tell these reporters what the story line actually is? Is it that difficult to decipher?