In January 2007, I was in the men’s room of the conference facility in Fort Lauderdale, FL washing my hands when Dr. Byron Hyde walked in. He started to complain to me, a stranger, about CFS and the conference sponsors, saying that this illness was 30 separate diseases wrapped in one, and that he could only help 15% of his patients. He was perplexed and angered by the vagaries of this conference, and its inability to focus on the problems. At that time, I had to inform him that he was saying this shit to the wrong fellow, as I was only interested in getting answers to my daughter’s illness. Since then I have come to understand more of the cesspool world of ME/CFS that Dr. Hyde was describing.
A few years later Dr Hyde was very quick to dismiss the possibility of an XMRV association with ME/CFS. He has his own ideas and they can be viewed here. In the past few years, Dr. Hyde has disappeared off the larger ME illness stage, presumably to continue his practice that yields so little success.
Time moves on, and Dr. Hyde is now joined by a host of people who have set aside the possibility of the association of a retrovirus with ME/CFS illness. Today we are told that the editors of Science magazine have asked the WPI and Judy Mikovits and Vincent Lombardi and the other co-authors to withdraw their October 2009 paper of the association of retroviruses XMRV with ME/CFS. What are we to make of this?
For starters, this request, to the initiated, should come as no surprise. There has been a feeling of inevitability to the dismantling of the retroviral (or viral) involvement in this illness since the publication of the October 2009 paper. Someone does not want this to happen – and it has nothing to do with science.
(Recently I saw an old acquaintance, a woman who was friends with Elaine de Freitas in the early nineties (their children were friends). The acquaintance got a “close up” view of the dismantling of Dr. de Freitas by the CDC, and it was not pretty picture – nor was it subtle.)
The only surprise is that the Science editors did not have the courage to withdraw this paper themselves. If they have made a mistake in publishing this paper, where is their courage in withdrawing it? How is it possible that the greatest “Science” research magazine in the world has made a mistake of this magnitude? When was the last time that something like this happened? Are these Science editors the Bernie Madoff investors of the science world? Perhaps there are other answers, answers to which we are not privy?
Why has it taken so long to knock out this paper - the weak association of a retrovirus with the innocuous fatigue syndrome knows as CFS? At the moment, we are to believe that the paper was lousy science; next we are to believe that the editors of Science were somehow duped. And all this took over a year and a half to supposedly disprove. What is with this? Is this how high-level science occurs? Remind me why I couldn’t get any of my three very smart kids to take any science classes in college. To them, one look was sufficient.
I stand with Dr. Mikovits and the WPI. This remarkable woman and this remarkable institute have brought so much to the field of ME/CFS research. I admire Dr. Mikovits tremendously for what she is doing for my daughter and for thousands of others. Please count Annette Whittemore and Vincent Lombardi in this group - and all the other researchers at WPI, all those who are driven to find a solution to ME/CFS. Please also include all those who are allied with and inspired by the Whittemore Peterson Institute.
People argue that the XMRV phenomenon has been a distraction, that it has taken attention away from other serious research in ME/CFS. Of course this is a fantastic joke. Please show me the serious research; the consolidated research that was happening that has been neglected. I, and the WPI, would be very interested in what has been dislodged. The WPI, even before XMRV, has elevated the level of research to the very top and - forgive me, for revealing this - they will continue to do so in the future. This institute, their researchers and clinicians, are committed to seeing an end to this illness. They will do whatever is necessary to get to that point. The interest spawned over the last few years linked to XMRV and other WPI research has propelled ME/CFS onto the world stage. Many people – important people – are now aware that this illness is a serious disease and needs attention. Researchers like Ian Lipkin, Harvey Alter, and even John Coffin are on record to find out more about this illness, its cause and treatment.
Of course there are other heroes in this field – too many to name. Not all of them line up directly with the WPI - but they have the spirit, the drive to look for solutions. Some are clinicians, some are researchers, and some are both.
Foremost among them is Dr. John Chia. Dr. Chia, an individualistic clinician/researcher, has gone perhaps farther than anyone to nail down a significant aspect of this illness He has revived a forgotten triggering aspect of the illness - Enterovirus (Echo and Coxsackie B viruses). His research has found real virus in real tissue. His current treatment (with oxymatrine) has modest success with 52% of patients. Dr. Chia believes that other treatment possiblities are in the pipeline with Roche Pharmaceuticals, perhaps available in the next two years. Dr. Chia, devotedly supported in his work by his wife and his son Andrew, is living proof that one person can make a difference. In this discombobulated, confused world of ME/CFS this is often forgotten and discounted. Dr. Chia is a very smart and dedicated man. Incidentally Dr.Chia does not spend any time denigrating others who are seriously working in the field of ME/CFS research. Instead he maintains his independent stance while admiring the work of others, including that of Dr. Judy Mikovits.
And then there are clinician/researchers like Dr Joseph Brewer, Dr. Jose Montoya, Dr Kenny deMeirleir, Dr. Patricia Salvato, Dr. Derek Enlander, Dr. Susan Levine, Dr. Sarah Myhill, Dr. Nancy Klimas, Dr. David Bell and Dr. Paul Cheney, all working to put together the pieces of this illness. All of these people have great interest in serious scientific pursuit. I can’t imagine that any one of them agrees with this Science magazine withdrawal request. All of them believe something significant is behind this illness, and all have wrestled with it for years.
And then there are the more confusing aspects of ME/CFS illness - aspects that are very difficult to decipher. In Reno Nevada in 2009, I stood three feet away from Dr. Dan Peterson, who was being honored by his patients. In a deeply emotional scene, Dr. Peterson, overwrought, was barely able to respond. It was a profound moment and I was glad to be there. At that point Dr. Peterson was in on the beginning research of the WPI. Shortly thereafter he resigned his Medical Directorship at the WPI – for unknown reasons. Later, I sat in front of Dr. Peterson at the InvestinME conference at the moment of Judy Mikovits’ presentation directly following the sandbag lecture of Dr. Huber. Dr. Peterson leaned forward to me and said that he hoped Judy “could control herself”. (She did). His comment struck me as signifying something. At this same conference he expressed to me his belief that XMRV was part of the problem - but not at the percentages presented in the Science paper. Since then Dr Peterson’s attachment to XMRV has wilted. Why? We need to know. Does he believe HHV6 is the primary culprit in the illness - and where is his study to prove this? HHV6 has been a suspect for 20 years without any proven diagnosis or treatment. HHV6 is our greatest hope? We might as well all go home. What went wrong here between the WPI and Peterson? Is this the stage we are at - where personality disputes control our lives, our health? What is the problem?
In the last year the retreat from an XMRV association to ME/CFS has gathered strength in a controlled and measured fashion, with various people switching sides, Stoye, Coffin, Singh, Peterson – a steady drumbeat of defection, unfolding as if choreographed by Merce Cunningham. Why have all these former advocates jumped ship?
Many others are still committed to the idea that something is seriously wrong with these patients, and they continue to try to figure it out - treating it as less of an “Abstraction” (an intellectual game), and more as a real illness with devastating, life-altering or life-destroying consequences.
What forces are at work here? There is great evidence of a power struggle – but over what? And who are the real losers? This last question is easy to answer – the patients get the short straw.
There is much strangeness to this situation. A single patient advocate, pinned down with disease problems of his daughter, can only catch a few glimpses in passing. But by stringing them together, one is left to wonder.
It is known that Jonathan Kerr’s samples from Dr. Enlander “disappeared” in a UK study and are unaccounted for. In the process, Jonathan Kerr himself has “been disappeared” for his fine research efforts in ME/CFS - and is now packing groceries at Sainsbury’s. All of Kerr’s efforts went down the drain. His alliance with the WPI was ground into paste. What is the consequence for the rest of us?
Dr. Bridgette Huber, a protégé of John Coffin, pledged the night before her lecture at the 2010 InvestinME conference that she would not present the results of her negative XMRV study. Something happened later that evening and Huber changed her mind. Most likely she got a late evening call from “Boston” telling or urging her to drop the bomb. It was evident at this time that something big was at stake. There was great eagerness on someone’s part to take advantage of the situation, despite it being the wrong forum in which to present this flawed data.
And then there was the delay in the Alter study. Please explain this to me? Along the way, perhaps you can explain it to Dr. Alter?
It is known that a researcher at the NCI was approached by a colleague early on in the XMRV discussion and told to “distance himself” from the WPI because “they were going to be taken out”. What does this mean in the world of “science”? I suppose this could have been some kind of joke, but subsequent events indicate otherwise.
In this entire sorry affair of trying to dismantle a retroviral association with ME/CFS, Dr. Coffin has played an important role. Dr. Coffin first took center stage at the CFSAC meeting in October 2009 as the resident "retroviral expert”. Relatively quickly he changed sides, devoting great efforts to dislodge any retroviral association with this illness - presumably forever. In the attempt, Dr. Coffin is doing a great disservice to continuing research into this illness. Whether he knows it or not, he is helping put the brakes on any continuing serious research, retroviral or not. His public preening and grandstanding include his misstep at the NIH State of Knowledge meeting where he impulsively recommended “moving on” – and then immediately started backing up. I imagine that Dr. Coffin might have something to do with the Science withdrawal request. There is some larger issue here.
Repeatedly the long suffering patients with this illness are accused of showing “bias” or hysteria in their interest in a potential solution - as though it were a crime to have aspirations for betterment, and their own sense of knowledge about what concerns them the most.
Clinicians are criticized - by nonentities - for treating very sick patients with antiretroviral drugs. These drugs are deemed to be “dangerous” and “with side effects” - even though these same drugs are being given out like candy in Africa as a prophylactic against HIV. ME/CFS itself has “side effects” - a crippling set of symptoms that delivers a “living death” to many patients. Why this great interest in prematurely closing the door on a potential treatment? Why do these “warning” come from “researchers”? What do they know? What is their real interest in this disease? Why do they feel compelled to practice medicine?
I advance these instances because I have stumbled upon them in my effort to aid my daughter. What I present is a partial picture of what I have observed. These instances disturb me, and make me wonder what has become of the world of science that I grew up in? Today’s world of “science” seems more a world of bad human drama, where there are no rules or restraints. Anything goes, and anything is possible. Who gets trampled on in the process makes little difference.
In the last year and a half we have witnessed a withering set of attacks on XMRV - the only consolidated serious shot of real science applied to this ME/CFS in many years. What has provoked this attack? Are we to believe that there is serious fault with the science – and that it is some big mistake? How come the resistance comes from so many different directions - some of it half-assed, some of it more serious - and yet, collectively, unable in over a year and a half to knock out XMRV? Science is said to be slow, but this is a bit thick. It is worth mentioning that resources for this dismantling have been “available” (from where?). A great deal of funding is working on the discrediting side of the equation, very little on the advancement side. Why is this?
The larger question, the most important question, remains unanswered. Where is the ongoing and future interest in this illness? Where are the larger research ideas and platforms? Where is the data? How come the WPI sponsored association of XMRV has not generated an ounce of further positive research at the NIH - perhaps outside of XMRV, perhaps looking to other causal factors? How come so few advance an interest in research into the fundamentals of this illness - even if XMRV is wide of the mark? There is a larger, more deadly association here - and it is to finish off all serious research into this particular illness. Why?
My contention, my belief, is that this illness generates disregard, disbelief and distaste. The patients are ignored, mistreated, and abused; those who have the courage to contend with the disease are ostracized and ridiculed; and those who research it are quickly sunk. One can speculate where the disregard comes from - what particular shape it takes - but all the evidence is there for those who want to look.
In this polluted environment, the WPI and Dr. Judy Mikovits and Vincent Lombardi are trying to make headway against neuroimmune illnesses. In spite of the very stiff resistance, momentum is on their side. Their aspirations are noble, and their cause is just. The WPI remain undeterred and are moving forward.
Us poor little suckers suffering from this illness are supposed to believe that both pure science and perfidy can exist side by side. This is a big lie. They overlap and are intertwined. Today, it is difficult for the average to above average intellect to figure out what is going on. It is very difficult to regard any efforts surrounding this illness to be moving towards a larger field of betterment. Everything is tangled to an infinite degree, and much of it is very negative - hostile even.
This illness has never enjoyed any sense of anything - just a lonely gloom, and the feelings of misdirection, hopelessness and unnecessary rip-off. What is it about this disease that frightens people and puts them off? Can someone explain to me the unexplainable?
I come back to the essentials. I love the WPI and Judy Mikovits - because they exist. Once they are gone, once they too are “disappeared”, we are going to notice the difference. In a perfect world the WPI would have spawned, as was their hope, other groups working hard at a solution. Perhaps the perfect world is still to come?
It becomes clear that ongoing research is going to have to come from private funding. The government is committed to hanging these patients with ME/CFS out to dry. Efforts will need to be made to secure private research funding. Research must continue into this disease, and those committed to it must not be put out of business. If not XMRV, then what? This is the question that researchers should be asking – and answering. There is no excuse for not pursuing the cause or causes of this serious illness. We need answers and we need treatments.