For instance, I’ve been trying to write about the international medical conference held in London on May 29th ever since I returned to the U.S. at the end of the first week in June. I have at least four drafts stored, together comprising so many pages I can’t bear to count them.
I’ve finally come to terms with the fact that I can’t possibly report everything that happened, or what everyone said, or everything I thought about the city of London and the great nation of England and how changed—how progressive and modern—Europe struck me after having not been there for so many years.
Here goes.
The British charity Invest in M.E. has held this event four times, now. An elegant wood-paneled auditorium at One Birdcage Walk, near the houses of Parliament, Westminster Abbey and Buckingham Palace is the setting. Though lasting exactly eight hours, attendance grows larger each year. Tickets sold out this year. One can imagine the London gathering turning into a major annual event in this field, if it is not already. If so, I hope it retains its wonderful spirit of free inquiry where many voices are heard, all ideas are welcome, and where the audience is filled with patients, their parents, their advocates and their doctors from many nations. I suspect it will.
Invest in M.E. arose from the longing of parents with desperately ill children to move science forward. In my experience, intimate personal acquaintance with this disease has always been the engine that drives progress. Doctors get interested when they acquire the disease, or someone in their family does; same goes for researchers. Parents of children with M.E. have always struck me as particularly effective advocates, not unlike parents of autistic children. Invest in M.E. seems a clear-headed, results-oriented and passionate group. Richard and Pia Simpson, whose two daughters are ill, are the primary organizers of the conference and its hosts. Their effort seemed not to be devised to promote either their organization or any particular ideology about the disease other than that it is serious, a medical condition, and in urgent need of scientific attention. Their eyes are wide open; they are highly sophisticated in their grasp of the politics of this disease, not just in England, but internationally.
The focus of this year's conference was on the most severely afflicted patients, a constituency that often goes unnoticed and unremarked upon not only in the lay press but in a great deal of the published research papers. It is most likely that long-sought answers to questions related to this disease will be derived from the study of this group.
It’s hard to imagine a general patient population that has suffered more horribly than the English, given the remarkable sway of a handful of British psychiatrists, such as Simon Wessely, who dominate and even define the field there. This cabal continues to propose ever more preposterous explanations for the emergence of this disease in England, their influence leading directly to the incarceration of patients in psych wards, the arrest of parents of patients, one might even claim the death of patients, and certainly all manner of abuse in the realm of treatments and therapy. Their influence over the fate of the disease “M.E.” in the upcomming 2012 American-issued DSM, the equivalent of the Physician’s Desk Reference for psychiatrists, is a deadly serious matter. Suzy Chapman has been plugging away at this issue for some time now in her worthy series, “Elephant in the Room.” Chapman’s title says it all.
All this bad karma has gone in two directions. Just as CDC definitions have poisoned the discovery process abroad, the British shrinks have been warmly welcomed and courted by various personnel at the Centers for Disease Control ever since Simon Wessely wrote an overture letter to the agency in 1988 hailing the new name and definition. If CDC employees were confused and didn’t know what to think of this new outbreak in the 1980s, the British psychiatrists were happy to give them a leg up on the psychoneurotic theory of the disease that is today the agency’s bedrock position.
A reminder that I was deep in Wessely territory came in the form of news of an invitation refused. Organizers invited Sir Liam Donaldson, the United Kingdom’s chief medical officer, to attend this forum. Indeed, they wanted Sir Liam to hear what would be said on May 29th in the auditorium at One Birdcage Walk so badly that they gathered 2,500 signatures and added them to their invitation. And yet, Sir Liam sent his regrets.
American speakers outnumbered Europeans at this year’s conference. John Chia talked about enteroviruses and antivirals, Garth Nicholson about chronic infections and the complexities of studying them. In some part because patients on several continents have so much hope invested in the Whittemore Peterson Institute in Reno, Nevada, and in part because the clinical and scientific presentations from this group seemed so high-powered, the triumvirate from WPI seemed to make the biggest splash.
Annette Whittemore was invited by the Simpsons to give the keynote speech. Daniel Peterson, a rugged fighter whose clinical expertise is probably unparalleled, gave a wide-ranging presentation about the clinical entity. Judy Mikovits is the WPI's chief scientist whose CV includes a twenty-year career in molecular biology at the National Institutes of Health, years during which she investigated mechanisms by which retroviruses dysregulate cytokines in the immune response, followed by years during which she worked on the development of drugs for HIV and HIV-related malignancies.
Whittemore compared her to a "race horse in a world of plowhorses," adding, "The rest of us just pretend to keep up with her."
The last presenter of the day, Mikovits delivered a lively, rapid-fire description of WPI scientific successes, which include, among other developments, two apparently complimentary and potentially slam dunk diagnostic tests for this disease.
One of them is a custom-made probe for herpes virus infections. The test was invented with the use of a viral array chip developed by a Mikovits colleague at the National Cancer Institute within the NIH. The herpes virus "chip" looks for five herpes viruses: Epstein-Barr virus, human herpes virus 6 and hhv6-A, cytomegalovirus and human herpes virus 7. It distinguishes “CFS” patients from healthy controls.
Said Mikovits, the herpes infections are “a consequence of immune damage.”
“If we all isolate the samples the exact same way, we can use these herpes chips worldwide,” she added, "and we can translate (the technology) to other cohorts."
A company called VIPDX has licensed the test for clinical use, Mikovits said, and she added that any other company is also free to license the test.
The other diagnostic test has to do with what Mikovits called the “immune component” of the disease, which employs chemokine and cytokine profiling. Vince Lombardi, a post-doc who has worked with Mikovits for three years, is the developer of this test, which so far seems capable of identifying "cfs" patients with 94 percent certainty. The test is "easily done," Mikovits said, "and can translate to any lab."
WPI looked at 118 "cfs" patients within the severe disease cohort, and 138 healthy controls. This disease, as we've known for some time, causes a cytokine/chemokine "storm." The data from this study supports a number of laboratory obvervations that already have been made in this disease. For instance, interleukin-8 is highly upregulated on this test and suggests a destructive feed-back loop is occuring. It's known that IL-8, as Mikovits said, "turns up cytomegalo virus, and cytomegalo virus turns up IL-8."
In another instance, the test finds that Interferon alpha is "down regulated." One of the roles of Interferon alpha is to stimulate NK cells and macrophages. Mikovits reminded the audience that in "cfs" there are deficiencies in Natural Killer cells and macrophages.
She added that even fatigued cancer patients, who may have abnormal cytokine/chemokine values, "did NOT have this signature...They had their own profile."
One of the many sobering facts that Peterson and Mikovits reported in London was that 77 of three-hundred members of a cohort from the 1984-1987 epidemic in Nevada have an immunological defect, called a clonal T cell receptor gamma rearrangement. The abnormality indicates, among other things, that patients are suffering from a viral infection they can’t clear. That alone is hardly a surprise to anyone who suffers from this disease. Perhaps more surprising, the defect is also predictive of developing lymphoma.
We’ve known since the early to mid-1990’s that, once this disease is acquired, the risk of developing lymphoma is significantly greater than the risk in the general population. There were broad hints of this phenomenon as long ago as 1986 when Peterson and Paul Cheney noticed increased rates of lymphoma occurring in the close contacts, specifically spouses, of patients with "cfs." Since then, there have been lymphoma-related fatalities in the Tahoe cohort, among them the well-loved and long-time “Tahoe survivor” Gerald Crum of Nevada, who died in the summer of 2008 of Mantle cell lymphoma, a B-cell non-Hodgkin's lymphoma.
Seventy-seven out of 300? That's stunning. Let's take a moment to consider that Wm. Reeves told a producer for ABC news in 1996 immediately after Osler’ Web was published that what happened in Tahoe in the middle-1980s had nothing to do with disease and everything to do with “hysteria”--and meditate upon the harm done in 25 years by Reeves and his agency and anyone who aided and abetted them.
Mikovits has forged a close collaboration with the National Cancer Institute in Bethesda, Maryland. The WPI counts scientists at the Cleveland Cinic and the La Jolla Institute of Allergy and Immunology among its collaborators, as well. In truth, this disease has never before engaged scientists of this caliber, nor has such sophisticated technology been employed in its study. The phrase "world class" comes to mind--a glossy, lofty phrase one rarely if ever hears used in discussions of "cfs" science. Perhaps we should all drop to our knees in prayer, or turn toward Mecca, or simply observe a moment of silence at some mutually agreed upon point in the future, in recognition of the fact that the major leagues seem to have arrived...on little cat feet.
Are Mikovits and her collaborators going to blast little CDC into smithereens? Is the nature of this game changing?
I'll just note that one of the research projects named on the WPI site has to do with Mikovits' collaboration with the NCI to search for novel viruses and co-infections in subgroups of "cfs" patients. The group has used a virus DNA microarray chip, a "Virochip," which looks for every known mammalian and avian virus, to screen a cohort of "cfs" patients with immunological defects and an increased incidence of Mantle cell lymphoma.
Say, how about that new study out of CDC about the use of alternative and complementary medicine by "cfs" patients? The one that conluded, "Compared to non-fatigued persons, those with CFS-like illness or chronic fatigue were most likely to use body-based and mind-body therapies. These observations have important implications for provider education programs and development of intervention strategies for CFS." That really moves the ball down the court, doesn't it?
Is it any wonder the students working in Mikovits' labs have given the CDC a new name? They call the place "Can't/Don't Care."
I gave a speech the night before this conference at a banquet dinner. I sought to outline the history of the CDC’s involvement in this field. Given that I was preaching to the choir I got little, if any, push-back, but I was touched by my warm reception nevertheless. I especially loved the way Annette Whittemore, by happenstance seated directly in my line of vision and not more than ten feet from me, sat absolutely erect, her eyes boring into mine, a broad smile on her face.
And the following morning, I sat in the front row listening to her deliver the keynote address of the conference. There is no need to interpret or editorialize upon her remarks. Here is some of what she said:
Regarding the institutes’s unique style that makes it virtually impossible to conduct research there without getting to know people with the disease, she observed:
“It’s a very, very powerful tool to have a research scientist sit in the same room with a patient who is so ill, and listen to their story…In fact, we have to tell our young students to go home, take a break. It’s no wonder they’re so loyal and enthusiastic. Their mentor outworks all of them,” Whittemore continued, in a reference to Mikovits.
“Dr. Judy, as she tells patients to call her, has taken this field by storm…Her expert, broad training in Frank Ruscetti’s (NIH) cancer lab, and drug development in southern California
taught her to realize when something is so terribly wrong. She answered a plea to come to Reno.”
In fact, Whittemore added, Mikovits happened to be sitting in the audience in Barcelona in the Spring of 2006 at an HHV6 conference when Dan Peterson presented data on his seriously ill patient cohort in Nevada. Peterson described his patients with adenopathy, HHV6 infections--and a tendency to develop lymphoma. He asked for help directly from scientists in the room.
“The most important difference (in the WPI’s science) is the broad approach” its scientists are taking, Whittemore continued. “We are poised to discover the causes of this disease, who is genetically susceptible, and what treatments best fit those patients' individual circumstances.”
The WPI scientists are currently “collaborating with the National Cancer Institute, the Cleveland Clinic, and experienced scientists from fields of virology, immunology, cancer and AIDS,” she said, adding, “we intend to discover what has yet to be confirmed: the underlying cause of the disease, sensitive and specific bio-markers.
“For I am one who very strongly who believes that not every virus associated with M.E. is the cause of the disease, but rather the evidence of something that has been acquired, resulting in a highly dysfunctional immune system,” Whittemore continued. “…The disease manifests itself in many different ways, but one thing is evident—it is not going away on its own. Sticking our heads in the sand and pretending it doesn’t exist is not helping those who are ill. Calling it ridiculous names doesn’t make the suffering go way. And rationing funding of serious research isn’t going to stop our work. We may have to work longer and harder to find the truth, but in the end, we will have our answers. And those answers will not be simple or benign, but neither is the disease.
“I am, yes, a parent of a sick child, like many of you, but she is not a child anymore. She is thirty-one. She has been ill since the age of twelve. In the beginning, I thought she might be dying of some type of cancer, but now I know she acquired a disease that was little known at the time…we went through the typical rounds of specialists. We paid tens of thousands of dollars and were cleverly sent off to psychiatrists who, fortunately for us, recognized how sick she was, and sent her back to her doctors.
"There were no answers then, and for the last 24 years, too little has changed. We are still seeking accurate diagnostics and effective treatments yet we consider ourselves to be the lucky ones...She found her way to Ampligen and had eight fairly good years in Dr. Peterson’s expert and caring hands. I can’t imagine what it must be like not to have that alternative, that option.
“…So many of you wonder how a mom of five, a homemaker, and educator, decided to build an institute. I was frightened of the future I saw for my daughter. I was saddened at the tremendous suffering I saw in the patients’ eyes. And I was angry that so little was being done to help. Then I began to get involved—slowly at first.
“Soon, it became apparent to me that something had to be done—I knew that Andrea and others soon would have no doctors to take care of them. Visits to our local emergency rooms are constant reminders of the ignorance that still exists everywhere. I thought about all the patients who couldn’t afford the very treatment that might end their suffering.
"I knew that something had to be done quickly. Luckily, Dr. Peterson was of the same mindset. He knew that he would retire soon and so would his contemporaries. He knew that no new doctors were coming into the field. The work was difficult, the hours long. And the same obstacles that existed twenty-five years ago still exist today--with no FDA-approved diagnostics and no FDA-approved treatments. And very little money dedicated to biological research.
"We needed nothing else than a new medical center where doctors could be trained and patients could be treated...
"There was no map to follow—no trail to be blazed.
We dedicated the first years of this institute to research. We couldn’t wait until the government decided to help pay for all that work. The granting process can take years to pay off.
"We hired Judy Mikovits and Vince Lombardi to open the lab and create the first research program. Little did we know that Mikovits was capable of pulling together a world class team in less than a year. She organized the studies, the samples, added a few students, created collaborations and wrote the grants.
"But she was told not to wait.
"...[T]he institute’s researchers intend to answer questions such as, what infectious pathogen changes a once healthy immune system into one that can no longer keep normal pathogens in check. Why cannot one return to normal and fight off infections as before? Why can’t the body refuel its stores of energy? Why is one weak and nauseated almost every day? Why do they have seizures? If we can answer these questions in a cohort of patients like my daughter, we’ll be able to answer those questions for many others with similar diseases using the same techniques.
"I promise the institute will not stop until we find the answers to these questions, to bring effective treatments, to bring patients back to their friends and families, and finally to discover a preventative strategy that prevents others from falling ill."
I met a beautiful Norwegian woman in London—I think all Norwegians are beautiful, but she was exceptionally so, and in so many ways. Her name is Kjersti. (Kirsh-tee is a close approximation) She is the mother of three children, young adults now, who live in a small town in Norway where a cluster outbreak of the most severe form imaginable of M.E. seems to have occurred, apparently among children, most of whom were either related or had contact with one another in school and by friendship. All three of Kjeirsti’s children have been profoundly ill for years. The eldest of her children was also the last to fall ill: her son, Bjornay, formerly a rising TV broadcaster in Oslo. The last time he saw a TV camera was when a team of journalists from a TV station came to film him in his room; the reporters needed to use a night-vision camera and could stay only a few minutes.
For approximately seven years, Kjeirsti and her husband have formed a tag-team of sorts. One of them must be in the house at all times to respond to the cries and needs of their three children, who have been for the most part confined their darkened rooms. Her trip to London to this conference was the first time Kjeirsti had gone anywhere, really, for several years.
Kenny DeMerlier, who presented at this conference, has visited this Norwegian town and Kjersti volunteered to drive him from home to home where these patients dwell, cared for by parents and relatives.
I learned a new phrase from Kjersti, who used it freely; it was a part of her lexicon and she assumed it was part of everyone’s lexicon who knew anything about M.E. The phrase was, “In the dark.” This is both a physical place—a setting where no shard of light may be allowed to penetrate as light itself is a source of excruciating physical pain—and a description of a place on the spectrum of this disease.
All of her children have spent, at times, literally years “in the dark.” They have been bedridden, in darkened rooms, barely able to speak or to listen; the touch of a hand to painful to bear.
The other phrase I learned from Kjersti was “Out of the dark.” It’s a place we all strive to be someday, spritually and intellectually. Kjersti's use of the phrase was so much more literal: she meant being able to be in a room when sunlight might enter through the windows; having the physical strength to speak; being able to listen to sound and experience touch without pain.
I heard from Kjersti recently. Two of her children, the youngest, are now "out of the dark." She is rejoicing. Bjornay, the journalist, remains "in the dark."
There were several other presenters at this conference who gave what I thought were extremely important talks. I've focused in this post on the WPI, but will give it another go down the road to report on lectures by Jonathan Kerr, Dr. Barbara Baumgarten, a Norwegian clinician, Professor and doctor Harald Nyland of Norway, Professor Kenny DeMerlier, and Professor Basant Puri. The latter gave an excellent presentation on neurolgoical and brain findings specific to this disease.
In the meantime, Invest in M.E has released the 4-disc DVD set of its most recent meeting. The quality of these DVDs, which I’ve recently viewed, is wonderful, and the cost is greatly more achievable—about $23 including shipping—than the cost of DVDs for US conferences, which tend to range in the price-gouging and generally unaffordable three-figure range. We must all send our thanks to Christine Hunter, the founder of the Alison Hunter Memorial Foundation in Australia, who provided a grant to Invest in M.E. to pay for filming the day-long conference as well as interviews with conference presenters by Prof. Malcolm Hooper. (Also, my speech.) Let's thank Invest in M.E. for respecting the pocket books of people who are unable to work.
Forgive what must seem like an over-the-top ad in a space I reserve for informed opinion, facts, matters of the heart, political art and comments from readers. Let me declare my competing interest: I enjoyed the conference tremendously and would definitely wish it on my best friends.
Finally, I arrived at JFK at 3 a.m. after an 8 hour flight. I arrived at Grand Central Station at 4:30 a.m. to discover every escalator was broken. I knew I had left Europe far behind. A woman cop helped me carry my suitcase up one flight. I will never forget her--ever.
(To order a 4-disk conference DVD series, see Invest in M.E.'s conference website.)
As a post script: Dr. Judy Mikovits has asked me to post her cell phone number and e-mail addresses to this blog. "These patients mean everything to me," she wrote. "I have never done anything with my private life but serve patients...we encourage each other."
Her e-mail addresses are: judym@wpinstitute.org. and Jamikovits@gmail.com
Her cell: 805-797-6967
Comments
Thank you again, as your blog was not too hard for me to read. Best wishes Joy
I forwarded your message to Dr. Judy Mikovits at the Whittemore Peterson Institute.
Dr. Judy Mikovits has asked me to post her cell phone and e-mail addresses to this blog. If you need or would like to call her or write her, she is available.
Her cell: 805-797-6967
Her e-mail addresses: judym@wpinstitute.org
jamikovits@gmail.com
Has anyone contacted Dr. Mikovits? Any response?