Thursday, August 26, 2010

Amy Dockser Marcus - Wall Street Journal

The Patient Advocate picks through the newsprint and internet coverage of the recent Alter paper release. Most of it is garbage writing written by garbage writers. The Patient Advocate would wish for more, but this is the world in which we live. In a recent post, the PA indicated several places for readers to get the clear story (the "poop-scoop") about MLV-related viruses and ME/CFS. The single best professional coverage has been and continues to be the writing of Amy Marcus Dockser in print in the WSJ and on the WSJ blog. Check out today's article. Amy Marcus, along with some other people, have "a sense" - not a hope, not a guess - but a sense of where this is all going. The more that she learns about this situation, the more interesting her coverage will be. It is important to send these articles to family and friends as they tell the real story of MLV-related viruses and the WPI with clarity and specifics.

The Patient Advocate wants to republish an older blog post on Amy Dockser Marcus in order to underscore the importance of her writing and the potential weight that this coverage can have - provided it reaches the correct audience. The Whittemore Peterson Institute and their cooperative institutions need all the help that they can get in the public relations field. The WPI is a small entity - a few people really - and the ME/CFS world needs to be educated about the WPI's unusual place in this world and their singular efforts to change ME/CFS forever. If you have not seen the WPI videos on youtube, see them here.

Patient Advocate post from 2/16:
"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 very, very remarkable gal.

Tuesday, August 24, 2010

The second most important day in ME/CFS

Yesterday was the second most important day in the history of ME/CFS research. Dr. Alter published his work on ME/CFS patients and reported the presence of MLV-related virus in 87% of these patients.

Never before in such a short time have so many articles been written about ME/CFS - by people who either knew or know nothing about this illness. The Patient Advocate worries how ME/CFS patients can sort through all this.

For the sake of clarity, the Patient Advcoate can point out a few of the more well-written articles - and every one of them comes from "the inside".

The first, of course, is Amy Dockser Marcus' article in the WSJ. Amy was at the VIP opening of the Whittemore Peterson Institute on August 16. She also interviewed a key figure in retroviral treatment possibilities, Dr. Jamie Deckoff-Jones. Dr Deckoff-Jones does not want to wait the 100 years necessary to fulfill "the needs of science", and she has been taking anti-retroviral drugs for five months. Her experience is chronicled on her blog.

A second, quite wonderful summary is found on my friend Kyal's blog site.

A third very compelling read is on the CFSCentral blog, written by Mindy Kitei. Read these three articles and you will strike the core of the issue.

It is important to remember that the first most important day in the history of ME/CFS research was October 8. 2009, the publication date of the astonishing discovery of a relationship between a MLV-related virus and ME/CFS. This was published as Lombardi et al. The WPI is not being given enough elevated attention for their remarkable, groundbreaking work with its far reaching implications. We certainly want to congratulate Dr. Alter and his team for their published study, but it is important to remember that his was a confirmation study. It is not so much that he and his team are cannon-fodder, but he was following the lead of others - and we do not want to forget that. He knew where he was looking and he knew what he was looking for. His work builds on and expands the work of Lombardi and Mikovits, but he did not discover this connection. Dr. Alter is sitting in the back seat of a car driven by others.

The Patient Advocate states this obvious fact as he is nervous where things will go for here. The PA is against marginalizing research at the Whittemore Peterson Institute. The PA would hope that the NIH comes to their senses and steps in and funds the WPI, but he would not count on it. Too many of yesterday's articles emphasize the view of "science" - that there is much more to do, that this study too needs to be confirmed, that we must wait for science to take its course, that this is the beginning of a long and episodic journey. It is the in the vested interest of "science" to string everything out as long as possible. This "science" has no sense of urgency. After all, the scientists, by and large, do not have this disease.

Even within the central organizations dealing with the illness there is a sense of caution, a sense that we need to "take our time", that more and larger studies need to be done, that causality needs to be discovered prior to treatment. This is all a bunch of crap. It is unnatural to strike against those who are seen as being like-minded, but this foot dragging is a bit too much - and these people need to be struck. They are too much interested in the gravy train. The rest of us have to deal with this illness, and we are interested in answers. The time for putting things off is over. It is time for action. The rough research outlines of this illness can be seen. The rest will be filled in later. Research can do two things at once.

This takes us back to the WPI - the private institution that started the MLV-related virus/ME/CFS research. The WPI gives no sense of waiting. They are pushing on, knowing that there is now potential diagnostic and treatment paths. They and their scientific allies are going down these paths and without a pause, without needing further confirmation studies. They see the future. How many others will join them now is anyone's guess. The WPI has invited/urged others to join them.

Of course the WPI itself will be conducting further studies into this virus family - and more confirmation studies of a retroviral involvement in ME/CFS will come out very soon (from others - Cornell, ARUP, InvestinME, de Meirleir reports finding XMRV in Europe.). The picture will be clarified. But this does not mean that we have to wait. The WPI wants to do more than wait, they want to do more than say how difficult things are. They want to move to the next level: diagnostics and treatment. This Institute got us where we are - and they are going to take us where we are going.

People who are ill with this illness (and their supporters and providers) need to think hard about this - and they need to step up and help. The evidence is in that research into ME/CFS, spurred by the WPI, has the potential to make a dent in this illness. The government might or might not help. They have such a sorry record that it would be hard to believe that they can overcome their own sclerosis in this matter. The word needs to get out of who is doing what, and what is now possible. The issues need to be clarified and pushed.

Saturday, August 21, 2010

XMRV = MLV-like variant

The Alter study arrived today and the results were as rumored, with a little twist. The study authors use the term MLV-related virus for XMRV, seemingly finding a variant of XMRV. This "variant" is closely related to XMRV - or it is the same thing. The Alter group used the same primers as the WIP and got increased percentages of MLV-related virus.

This release sets the stage for the NIH to rapidly funnel discretionary funding to the WPI and their allied labs in order to accelerate research into ME/CFS illness. Perhaps now the NIH can fund the WIP proposals that they turned down (based on their absurd reasoning that XMRV was "experimental").

The NIH is a "more together" department than the FDA or the CDC, and it is possible to get the NIH on your side. Once this happens things can move along quickly. We see in the NYTimes article of August 13th what can happen when the NIH funnels enough money into a situation to neutralize the greed of these scientists, and to allow them to temporarily suspend their maniacal egos. Can this happen here? Can the NIH infuse enough money fast enough to neutralize big-shot/little-shot scientists from borrowing (stealing) the WPI's data (which seems to be their first inclination)?

It is time for the U.S. government to do "one correct thing". It is not too late for them to redeem themselves.

Meanwhile the folks at the FDA must be freaking out about the blood supply. They were told in a closed door meeting in July 2009 about the potential threat of XMRV to the blood supply and they chose to do nothing. Now the FDA's foot dragging is going to be costly.

A simple question can be asked about "these people". What were they thinking?

Meanwhile Amy Dockser Marcus publishes this in the WSJ today.

WPI video celebrating opening.

The WPI released a video today, celebrating the opening of their new building. This video addresses the incredible public and private collaboration in the making of this Institute. A future video will define more specific issues. The film was filmed and edited by Peter Cairns.

Here is a photo of filmmaker Peter Cairns on location above Incline Village, NV, site of the 1984 outbreak.

Tuesday, August 17, 2010

The Rainmakers

While attending the IACFS conference in Reno in March 2009, the Patient Advocate drove past the construction site of the Whittemore-Peterson Institute and took some pictures. (The PA imagines that he was not the only one to do this.)

There was not much to see at that time – a dirt patch and several poured concrete walls. The Patient Advocate cannot remember ever being as excited about viewing a construction zone. The PA stood awhile and watched steam shovels digging and trucks moving around piles of dirt. The PA was thinking ahead to what was going to happen on this scrap of desert at the northern most part of the University of Nevada, Reno. The PA had visions of eventually bringing his daughter to this Institute for treatment. He still has that vision.

Amazingly the Whittemore Peterson Institute for Neuroimmune Disease opened this month – to the public on Saturday August 21st. and to a VIP audience on August 16th. The latter celebration featured a keynote address by Senator Harry Reid and speeches by various public and University officials. Senator Reid is the strongest supporter of ME/CFS research in the US government, and the ME/CFS community owes a great deal to him (politics aside). Because of Senator Reid there are others who are beginning to take some interest. The local Reno representatives have been equally active in bringing this situation to reality. The consequences of Reid potentially being voted out of office is going to impact extremely negatively for the advancement of ME/CFS research in Nevada. The Patient Advocate hopes that Nevada residents suffering from Neuro-immune illness keep this in mind as they pull the lever. This is less a political statement than a statement of reality.

The establishment of the Whittemore Peterson Institute has been an immense public/private collaborative effort that is going to redound to the benefit of all involved. To borrow a phrase from another person and another setting: “This is it. This is what we have been waiting for!”

After the ceremony on Monday August 16th, there was a reception in the new building. Tours were given of the facilities and an eight minute video celebrating the opening was shown in the auditorium. This video will shortly be available for viewing on the Whittemore Peterson Institute website. The auditorium seats about 100 persons and lends itself towards presentations and discussions.

For starters, the reader can look on the WPI's website at a time-lapse video of the construction of the building from beginning to end. High off one end of the construction site stands a fixed camera that takes a picture every 7 minutes of the days, months and years of construction. Playing this video (please play the full screen version) you can literally see the building unfolding in front of your eyes.

The Whittemore Peterson Institute is a beautiful building indeed, rendered in this manner by a fine architectural firm, Dekker/Perich/Sabatini. This firm was charged with making a hospitable home for the Neuro-Immune research and treatment center. They did a fine job. People intimately involved with this illness were involved in the design at every step of the way. These people do not just sign off on someone else's idea of what needs to be done. They do it themselves.

The WPI shares this new building with the University of Nevada’s Center of Molecular Medicine. With this large building the University of Nevada, Reno is putting itself firmly on the map of molecular research. Within this larger building, the Whittemore Peterson Institute encompasses 19,000 square feet of medical space, including over 4,000 square feet of basic and clinical laboratories dedicated to innovative research. It will be a place where ME/CFS patients can be diagnosed and participate in clinical trials, where novel research will be conducted, and where medical students can learn about this disease.

The inside of the Institute building is tailored to the needs of the WPI physicians and researchers. No longer do the researchers have to work in a makeshift lab on top of existing University chemists and biologists. For the first time the WPI has its own dedicated research space – and it is a state of the art research lab - the first in the world dedicated exclusively to research into Neuro-Immune illness. Additionally the WPI research labs are in close proximity to University faculty in the Center for Molecular Medicine, thereby facilitating informal exchange and interaction.

Across the way on the same floor is the new home of the VIPdx labs. For the first time, the clinical lab will be housed in close proximity to both the research lab and to the diagnosticians. This new space, again state of the art, will allow for closer coordination of the two labs, as well as faster and more immediate diagnostics for the attending physician or physicians.

The third major element of Neuro-immune Institute is the patient treatment facility. This large area includes offices, waiting rooms and treatment facilities. This is the domain of the new Medical director of the WPI and his (or her) staff. Here he or she will oversee other physicians in the treatment of patients. It is in this area that testing and treatments will be developed that will be of help to many thousands of patients.

True to form, every aspect of the treatment center is designed with the patient in mind – and for the particular needs of this patient population – in ways that have never existed anywhere before. For instance there are multiple isolated, soundproof, rooms (or cubicles), where patients can be treated horizontally and free from stress. These rooms are designed to sustain and protect the fragile, chemically sensitive patient during treatment or examination. In this way patients will be more readily tolerate the treatment visits.

The Patient Advocate is particularly sensitive to access to medical facilities. The WPI building has a readily accessible main entrance where a car or van can pull right up to the front doors. These doors open automatically and the distance to the elevators is less than 50 feet. There are two elevators that respond promptly and allow the patient to arrive at the doctor's office and treatment rooms in a matter of seconds. This has obviously been carefully planned out for the greatest ease and convenience for the patient.

While patients can travel for treatment to the WPI, it is important to note that this will not be necessary. The WPI imagines developing worldwide interactions with like-minded research and treatment centers. This Institute aspires to develop treatment protocols that can be exported to other physicians. In this way, it will not be necessary to come to Reno to get treatment.

The WPI is the first Neuro-Immune research and treatment entity in the world but they have also done this in the “right way” – with the patients in mind. Now it is a reality, for all to see.

On Tuesday the 17th, the WPI hosted an all day invitation-only conference on research (XMRV research) in ME/CFS. So right at the beginning – Wham, Bang! - the WPI makes things happen. This is the calling card of the WPI - sharing information, translational research and medicine, opportunities for exchange of ideas - all with the goal of pushing along research at a increased pace and to bring treatments that will bring relief to these neuro-immune patients. The Patient Advocate can assure the reader that this conference exceeded expectations and generated exchanges that advanced the basic ideas of the WPI. In other words, the intellectual aspirations of this conference matched the beautiful reality of this new building. Several very well-known participants commented that this was the best scientific conference that they had ever attended. These events, along with what will unfold in the next few days, weeks and months are the realization of the efforts of a dedicated few to get to the very center of this illness. We need to thank them and give them help.

In an effort to help his daughter the Patient Advocate has been to many places and seen many people. This event in Reno was astonishing.

"Reno - it's not just for gambling anymore."

Check out this WPI video by Peter Cairns.

Nevada newsmakers

Here is a bit of exciting news coming out of Reno, Nevada

And here is a bit of additional news from Reno

Reno and Nevada are on the map with ME/CFS.

Wednesday, August 4, 2010

The Flashpoint and the Big Squeeze

A few months ago, the Patient Advocate wrote a post entitled The Flashpoint. Now it is the beginning of August and I want to revisit this subject. It is time to reassess what is happening in the world of ME/CFS. On the surface, this is a difficult time. Surprisingly, the NIH paper is still being withheld. (We are awaiting word on the InvestinME UK study.)

The Patient Advocate would like someone to tell him what is gained in delaying the release of this NIH study? The PA would like for someone to tell him what "review" of this study is necessary? This all was a crock of shit. The truth is that this is a delaying tactic - and the tactic would have totally worked but for a leaked paper and for the energetic intervention of a few persons acting on our behalf.

The Science study was published many months ago. In the real world (a world prior to our world), this research would have ignited great excitement and a serious effort to confirm or demolish it. This is what science is about - "Nothing upon another's word." The Patient Advocate would welcome a serious study disproving the association of XMRV with ME/CFS (if it is in the cards). (Who wants to chase chimeras?) The Patient Advocate wants the XMRV/CFS connection to rise or fall on its own merits. This is what science used to be about - rigorous competition, complex challenges, thorough study, confirmation, testing, testing again- and the ultimate excitement and benefit of success, should it be obtained. Today many scientists do not play this game. Instead we get a bunch of "new-fashioned" scientists trying to knock down XMRV for a bunch of hapless reasons. We live in a pathetic ego-driven age - the Age of Stupidity. Everything - every aspect in our culture - gets short-circuited. Like our banks, science too is leveraged.

In the past year, the CDC has asked, relative to XMRV, for additional testing of various studies and presentations. These bureaucrats hold the rest of us hostage. The CDC asked for more information and then sat on it, silent, brooding, and uncommunicative for months. Why would the CDC want to delay this science moving forward? Why did the CDC sidetrack the situation with absurd requests and deliberately designed studies to get zero XMRV findings?

The PA can give you a few goals of these obstructionists (to which you can add your own).

1.) It is very important (for the CDC and others) to put the brakes on ME/CFS research. Certain anti-ME/CFS elements do not like the direction in which things are going (for a variety of reasons). At the moment nothing can move forward in the application process for research grants. There is a seasonal grant application period and it has passed. Additionally, the WPI and others cannot apply for XMRV grants because this research is still "experimental". For the obstructionists, the longer the situation stays this way the better. To them, any delay is seen as a positive. What difference does it make to them? They can always think up an endless set of roadblocks. Their single desperately focused goal is to slow the momentum - and in the process to choke the money flow. In this regard, those opposed to ME/CFS research are succeeding quite well. The main target is the WPI - the Flashpoint.

2.) For the obstructionist it is important to slow down donor giving by generating innuendo, uncertainty, and then disinterest. The obstructionist attitude is this: Let's see how many ways we can muddy the water. This XMRV discovery normally would have propelled private research dollars flowing into the WPI and other private research. Perhaps even the federal government might have wanted to get involved? Instead, with the obfuscation, the money flow has not been forthcoming. This choking off of funds is an age old tactic. We saw it with Jonathan Kerr, in the UK. First he was given a little money, then he was given no money, then poof! - he is gone - disappeared.

3) It is important to the XMRV deniers to put a damper on the momentum of the WPI and particularly to tamp down the celebration of its new building in mid-August. The importance of the opening of this Neuro-Immune Institute cannot be overstated. This is a very big deal. This Institute is going to be a symbol - in concrete and glass -of dedicated and tangible ME/CFS research. Anything that can deflate the celebration of this private, philanthropic effort will be undertaken with whatever innuendo and distortion necessary.

4.) And then, for obstructionists, there are the "no discernible reason" reasons. These reasons are born out of the bureaucratic mind: boredom and/or Nihilism. These "problems/excuses" include "creatures of habit", knee-jerk reflexes, innate fear of superiors, their own guilt concerning past history with CFS, a natural attraction to idiocy, fundamental intellectual weakness, professional jealousy, "control issues", "power games", too rich a diet (from fancy dinners), working in a building with no windows - all the "modern" problems. Who knows what else? -you can add your own reasons. This is our government - at least at this level.

Despite all this, we can imagine this real and tangible symbol - the WPInstitute building - will be open soon, first for research and then for treatment - the latter in a few months. This will be the first institute devoted to research and treatment for Neuro-Immune illnesses. After this the WPI will take on an even more visible role as a clearing house for ME/CFS treatment and research. The WPI's calling card is action-oriented, expansive and generous research efforts. They want to share and export their research and testing and treatment. Is this too grand an idea? Are we not worthy?

Of course there is a subplot here - a rarely mentioned item or two. Certain people do not like the emergence of a dynamic new idea coming from a Podunk state like Nevada, and from a bunch of privately funded non-academic scientists. It does not conform to the rigidity of the average, non-thinking mind of academic science (Acanemia). To them it is inconceivable that something of this magnitude could emerge outside of the insular world of Harvard and Stanford. Additionally, to their minds, Reno is such a nowhere place. When was the last time that something important came out of this backward place, they ask? Thirty-five years in academia has taught me to expect anything - particularly in regards to low aspirations and infighting. Academia is a cesspool.

The CDC will hang on for as long as they can - until these "power boys (and gals)" are ground up into mincemeat. One can see the parallel to 1992, but this will not be a repeat of that year. At that time, very few people stood up - or not the right people - or not enough of the right people. And importantly, no one at that time could believe the CDC would act in the way that they did. This time it is different. This time everyone knows that the CDC is devious and lies regarding this ME/CFS matter. It is in the record. What the CDC does not realize, is that the world turns - and it is still turning. The fact that they are dragging their feet does not mean that others are dragging their feet. The work at the WPI and other labs goes on - and the struggle continues.

Not surprisingly the WPI is moving forward at a consistent and measured pace. Certainly having to defend themselves every step of the way is a distraction, but this is a tactic, a tactic of those who want to disable scientific research into ME/CFS. The WPI is a flashpoint, the most convenient and obvious target. They get this assignation because they are very aggressive and have done so much in such a short period of time. So far, the full significance of the WPI's work is not clear, and it is, at this moment, very much in doubt whether we will ever find this out. Personally, as an impartial observer, I want to know.

In the Patient Advocate's coming and going, he sees and hears many things. As a blogger, he is free to write what he wants. The Patient Advocate is not a journalist. The PA has no sources, except for my own wits. He does not need sources. One of the surprising (or not so surprising) things that he observes is various forms of the "Big Squeeze". At the NJCFS conference last fall, the PA sat bolt upright in his chair on hearing of threats aimed at Dr. Ken Friedman and his university job. The PA is fully aware of the stringencies dished out towards Dr. Sarah Myhill and two ME/CFS doctors in Belgium. Others, unnamed, are constantly under threat for their dealings with ME/CFS. The PA has learned to discern the meaning behind doctors talking in a whisper about ME/CFS. The PA has learned to lean forward in order to hear.

And then there is our ME/CFS UK friend, the researcher Dr. Jonathan Kerr. I have written about Dr. Kerr before, most recently in late May, when I saw, with my own eyes, "the writing on the wall". Recently Dr. Kerr "lost his job". This means one of several things. Either he was fired, or he was denied tenure (the same as being fired), or his contract was not renewed. Contracts are usually not renewed in academia because of "weak research". It is not difficult to deduce what happened here. Whatever the particulars, this is a deeply saddening and disturbing story. Dr. Kerr was a fine and objective researcher, working on the complex relationship of genes and ME/CFS. As a legacy we can be assured of one thing. Dr. Kerr's research in ME/CFS has come to an end. The conclusion that we can make is this. The squeeze that is often given is not a little squeeze, it is not a "friendly" squeeze. No it is the "real deal" - a squeeze that breaks all the bones in the hand, or breaks ribs and collapses the chest cavity. It is the "Big Squeeze".

A good number of months ago, several persons showing "partiality" to the XMRV research efforts were advised to take a step back. The bearer of this message indicated that the these research efforts and labs were going to be neutralized - the operative word is "taken out". You can believe this or not, but this is the essential matter of the struggle. You can nuance it this way and that, shade it however you want, but we are witnessing a very serious effort to take out ME/CFS research. It is worth mentioning that the WPInstitute is not really the issue. It is just the most obvious target - no matter what indiscretions that one wants to unfairly and hypocritically dump in their laps. (I always found these "tactical" criticisms of the WPI or Mikovits in particular to be an equivalent of blaming the ME/CFS patient for their illness.)

The Patient Advocate would like to comment on speculation that "the Patient Advocate is clearly tied into some of the action at the WPI". Not only is this an incorrect assessment, but it degrades the PA's place in the world. The Patient Advocate is an independent observer. The PA is "tied to" one thing only: the PA "is tied" to his daughter and to her betterment. With that in mind, the Patient Advocate determined very early on that the WPI was an unusual research effort, something new and remarkable that had surfaced in this little centrifugal world of ME/CFS. The WPI represented (and still represents) for him a consolidation of the best "hearts and minds" efforts in science as applied to ME/CFS. The WPI is a place devoted to scientific enlightenment. If the WPI is taken out, it is going to be a permanent setback. People involved in ME/CFS need to think very clearly about this situation. It is not a matter of agreement; it is a matter of clarity. Concerned ME/CFS patients and advocates have to connect the dots. It is crunch time.

All this is not a new story. But as Igor Stravinsky said, some things bear repeating. This is one of them.

Monday, August 2, 2010

"Change is coming" - Amy Dockser Marcus video

The Patient Advocate received an email this evening from his friend Jay Anania. Jay sent me the link to this youtube video of Amy Dockser Marcus. A few posts ago the PA tried to express his feeling about this reporter's "specialness" in regards to her writing about ME/CFS. While realizing his shortcoming in actually doing this, this video speaks directly to the issue. No interpretative expression is needed. Here are her feelings - "from the horse's mouth". This video heightens and confirms the Patient Advocate's high regard for her. She is in the right place at the right time.