Friday, June 3, 2011

Moving forward in an imperfect world

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.

86 comments:

  1. At the 2009 IACFS/ME conference, I thanked Dr Peterson for standing by us all these years and NEVER backing down.

    With a look of fire in his eyes,
    he replied "Never! I have never wavered on this or backed down. Not one inch."

    Some people wonder why I won't back down on "CFS" and just admit that the CFS-denialists have won - that "CFS is what they say it is".

    If you had been there when Dr Cheney and Dr Peterson fought for us against the CDC,
    all those years ago...
    then you would surely understand.

    ReplyDelete
  2. Well ME patients won't back down and let you and other ME denialists say it is CFS and what you say it.

    I have met Dan Peterson and will admit I am surprised, but actions speak louder than words.

    Patient advocate sums it up wonderfully. But we say this and it sounds paranoid and conspiratorial. Have nothing profound to add, just to keep supporting WPI.

    ReplyDelete
  3. Accusing them of "ignorance" "unscientific" and "harming patients" for using the CFS term is scarcely being supportive of the WPI.

    -----------------------------------------------


    Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
    Vincent C. Lombardi,1,* Francis W. Ruscetti,2,* Jaydip Das Gupta,3 Max A. Pfost,1 Kathryn S. Hagen,1 Daniel L. Peterson,1 Sandra K. Ruscett...i,4 Rachel K. Bagni,5 Cari Petrow-Sadowski,6 Bert Gold,2 Michael Dean,2 Robert H. Silverman,3 Judy A. Mikovits1,

    Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines after their exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS

    ReplyDelete
  4. Erik, that's not what I said. They explained how they used it. Everyone understands. They did not create the term or diagnosis so this is just more distractions and misrepresentations.

    ReplyDelete
  5. .


    "Trying to defend or justify CFS is insane."
    -Jill Mclaughlin

    --------------------------------------------

    That is exactly what you said, on innumerable occasions.

    Shouldn't you give them credit for possessing enough sanity to say that they might be on the verge of figuring out what CFS is?

    Doesn't it cross your mind that your consistently conflicted and contradictory assertions might qualify as "confusion" or obfuscation?

    ReplyDelete
  6. Go to the library or bookstore and pick up a copy of "Death of the Liberal Class" by Chris Hedges. It may not sound like it has anything to do with CFS but it does (and more.) It answers all of your questions!

    ReplyDelete
  7. Jill and I have been going at this debate for FAR too long for any hope of changing each others minds.
    But if you think about it... if a person can boldly go into a blogsite called "CFS patient advocate" and assert that CFS is just a fatigue illness without meeting serious resistance,
    or even some (Huh?)...AGREEMENT,
    could one help but conclude that "CFS" patients are not particularly committed to their cause?

    Should "CFS" get any funding, support, research, or even basic belief, if they don't defend their credibility on their own turf?


    If anyone has the impression that by helping the CDC demolish CFS, this will result in an amazing epiphany on acceptance of ME, they need to look over the history a bit more.

    ReplyDelete
  8. Great job Chris, this was, sadly, brilliant. i wish the state of the affairs were different, but at this point, you are right, it is the patients and their families that are losing.

    And if I may comment, at this point, ME, CFS whatever, That fight is not the one we need to win at this point. Definiton, we can leave that to Lenny Jason. what matters is to get us some healthcare.

    ReplyDelete
  9. Thank you, Chris. You said it well. In our imperfect world, we need your voice.

    ReplyDelete
  10. Hi Chris: Have been thinking about you and your daughter. Blake just finished a semester part time at college...it was ROUGH...but this is OUR LIFE right? Today I was doing his laundry that he can not cope with doing....and I thought "I wonder if Chris is with his daughter? I wonder how many of us parents are out there doing this exact same thing?" We received a ROTTEN email from a family member today....another viscious attack on Blakes "laziness at not working and only taking 2 classes at school". Will the Public EVER UNDERSTAND? Which brings me to my point...if scientists are unable to understand how to replicate WPI's work.....why not do more studies to do replication? Is the WPI allowed to fund more studies? Surely, patients would support such an endeavor....even renting out the WPI space for a few years to pay for such studies would be worth the outcome. The building is prime real estate. There has got to be a collaboration, a way, a strategy to overcome this hurdle. Best, Julia....

    ReplyDelete
  11. Chris, You raise an interesting question: do we need to actually know the real motive (s) by what appears to be an enormous effort to stop research into CFS and retroviruses? WTF is pulling the strings and intimidating scientists? Is it a single high placed person such as Fauci? Or others? Would it be helpful to find out or do we just need to support the WPI to keep at it?

    I think most puzzling to me (but in the long run maybe not important?) is why Dan Peterson who I deeply admire for sticking with us for thirty years signed on to a study insisting that the door is now closed on retroviruses and CFS. I can perhaps take guesses at the motivation of others, but this I can't fathom. It's not signing on to another negative replication study, which should rise and fall on its methodology, but this insistence on abandoning the retroviral link. I don't get it.

    And yes, I agree,Chris, that before 2009 Science study there was no serious areas for research into CFS, other than Chia and Montoya, and Lerner, working on limited budgets. If the WPI is crushed we will go back to CAA investigations of the HPA axis, and for many of use we can kiss off a real treatment or understanding in our lifetime.

    michael

    ReplyDelete
  12. I'm sending $100 to the WPI right now. Without the WPI we have nothing. Please send what you can, even a $1 makes a difference.

    ReplyDelete
  13. Thank you, Patient Advocate. You do not stumble upon anything. You seek the facts and shine the bright light of intelligent analysis on them, and I am grateful.

    It is clear that whatever the reasons, our fate as ME patients is endangered because attempts are being made to bury current HGRV research, just as DeFreitas' research was buried years ago. I believe this week's coordinated release of negative papers and the announcement from SCIENCE that it is seeking retraction of the Lombardi paper was supposed to be the coup de grace. XMRV/HGRV research/WPI dead June, 2011. Fortunately for us, neither WPI nor ME patients are so easily killed.

    It is increasingly clear that not only will our government fail to help us, they will actively fight our attempts to get answers from research and regain our health. If we are to succeed, clearly we must do this ourselves. WPI cannot do all of this alone. We must somehow find a way to obtain funding for HGRV research, especially at WPI. My question is: How? We are sick; some of us are dying. How can we do this?

    Patricia Carter

    ReplyDelete
  14. Chris you express your concerns very well.

    I can't agree with some of your points of contention or some of the conclusions; but then I wouldn't expect you to think everyone would.

    Keep posting - keep fighting :)

    ReplyDelete
  15. Yes this is the Wild West of illness and science. Or for us here in Europe it's Kafkaesque. Thank you Chris for your questions and analysis.

    ReplyDelete
  16. Chris. thanks.

    I agree with most everything you said.

    I hope this stunt of the Science asking the WPI to withdraw their XMRV paper is enough to galvanize various patient groups in the push for the truth.

    Markmc2000

    ReplyDelete
  17. Thank you so much Chris,
    I'm sick and cannot blog myself but find it heartening to see we have real advocates who ask the digging questions and try to find answers to our questions.
    I believe we are in for a bumpy ride but we will never give up. The WPI will always have my fullest support.
    Dr.Mikovits is a tenacious lady who I cannot ever see giving in to those who try and distract us from her science
    Thank you Chris.

    ReplyDelete
  18. Thank you for writing Chris...as usual you ask the right questions. I suspect you are right, there is a higher power pulling the strings on this, John Coffin is not the ME world of Lord Voldemort but who is? We need to unearth the answers to these so vital questions. Perhaps the Pentagon are involved? I do hope you are not serious about Dr Kerr packing bags in Sainsburys?

    ReplyDelete
  19. "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?"

    Perhaps a few Freedom of Information requests to those involved in this might shed some light on where the money is coming from.

    ReplyDelete
  20. This whole ME/CFS picture that you have so accurately painted clearly indicates to me that there is/are powerful forces (big pharma?) paying big money to senators/government bodies to bury this association with XMRV.

    The real questions for me are Who? And Why?

    It must be political because there is too much evident manipulation and on both sides of the pond.

    If we as a community let this go unchallenged we will never find those really responsibe for this sorry episode and it will further unnecessarily prolong the devastating effects on our health.

    ReplyDelete
  21. Thank you so much for continuing to write and to raise these issues. It certainly makes me think about increasing my small monthly donation to the WPI.

    ReplyDelete
  22. Julia's comment sounds like an exact duplicate. The struggle is bad enough, but the near total lack of support and then the constant barrage of nasty comments is a major issue. My older daughter has been bedridden, and just met an old friend who said oh she still has that "fatigue thing?" If a retrovirus doesn't do it, even if it is associated with "CFS," then what will. CFS slams the door on any understanding, concern or funding. Only a sadist would try to justify or promote "this illness" as CFS.

    ReplyDelete
  23. Kent HeckenlivelyJune 4, 2011 at 7:37 AM

    Chris:

    Sometimes different groups of people come to the same conclusion. My concern is my daughter's autism and all that I have learned over the years.

    The answer is pretty simple to me. The passage of human viruses through animal tissues to weaken them is one of the worst ideas in the history of bad ideas. I believe this is why XMRV shows so relatively little sequence diversity. My community is focued on toxins like mercury and aluminum, (which do shift the body's immune system away from protecting against viruses), but that's not the biggest problem. It is the "contamination" of the human population by these vaccines which have unexpected passenger viruses. This is the cat they don't want to let out of the bag because it will destroy the vaccination program.

    My daughter with autism, my wife, and my mother-in-law have all tested positive for XMRV and they all have their own health problems. I have tested negative as has my father. Once infected it seems there is a mother to child transmission, which can be exacerbated by early vaccinations.

    There is no fight in the world more important than the one the ME/CFS, autism, Gulf War illness, and lyme (I know I'm leaving some groups out), but there are billions of dollars at stake for the pharmaceutical companies.

    ReplyDelete
  24. Doesn't it strike anyone as odd that ever since the inception of CFS, that the CDC has successfully managed to avoid detecting any more outbreaks of this type of illness?

    You have all been deliberately cast as nothing more than a myriad of individual foibles and flukes, determined by factors which you failed to control.

    The Kaplan and Holmes investigation was a mistake all right. The CDC believed that the mere authoritarian presence of its epidemiologists who "found nothing" should easily crush a couple of hick doctors up in the mountains. Problem OVER!

    They didn't count on Dr Cheney and Dr Petersons determination and the power of the evidence.
    "CFS" was mandated as a response to that evidence.

    The CDC has never allowed any more instances where the evidence could "get its foot in the door.
    All those CFSAC testimonies get a nod and a pat, but no response. You know this.

    The CDC couldn't slam the door on the ILLNESS and the EVIDENCE, but there was something else they COULD do.
    Give the illness a dumb name and spread rumors that the evidence didn't mean anything
    and allow the enraged and deluded patients to pull it back out themselves.

    If you demolish the only token gesture of deference to the evidence that this illness has ever gotten from the CDC/NIH, do you really think the gates will be flung wide open for ME?

    If CFS back down and do this to themselves, then maybe the CDC is right.
    Perhaps CFSers ARE crazy!

    ReplyDelete
  25. Sharon StapletonJune 4, 2011 at 8:06 AM

    Dr. Deckoff-Jones put on her blog the WPI chart "A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome" http://treatingxmrv.blogspot.com/2011/06/comparison-of-methods-for-detection-and.html?spref=fb
    This chart compares the WPI study to the negative studies and is so damning of the negative studies and shows quite clearly, to even the layperson, that the negative studies were shoddy, dirty, did not follow a solid methodology or even try to replicate. The negative studies are shown very clearly to be INVALID. I am using this chart all over to counter attack the negative statements made against the WPI and to REVEAL that the negative studies are the ones that are invalid and should be disregarded. Take a look at the chart. It's amazing how poorly the negative studies were performed. Use the chart all over to damage the negative studies - Fight and keep fighting. Thanks Chris.

    ReplyDelete
  26. Why not put pressure on the journals to retract the invalid studies that are not replication studies? Why doesn't their failure to find it cast doubt on their competence and methods, rather than back on those who actually can find it?

    ReplyDelete
  27. "CFS slams the door on any understanding, concern or funding. Only a sadist would try to justify or promote "this illness" as CFS"
    -Jill Mclaughlin


    -----------------------------------------------
    Whittemore-Peterson Institute.
    "A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome" http://treatingxmrv.blogspot.com/2011/06/comparison-of-methods-for-detection-and.html?spref=fb

    ------------------------------------------------

    Jill, do you intend to continue accusing the WPI of ignorance, sadism and insanity?

    Or will you put an end to your highly-conflicted bizarre-strategy and begin supporting them instead.

    ReplyDelete
  28. I've noticed everytime someone says they have become a patient of Dr. Peterson lately they start talking a lot about HHV6 and saying doubtfull statements about XMRV. I 've been noticing this for at least 6 months.

    ReplyDelete
  29. Anonymous.
    Consider this.
    What if Dr Peterson conceives of "CFS" as being the precise illness entity which caused the syndrome to be created?

    If XMRV can exist in healthy controls, then "CFS" wouldn't manifest without something else. If that something which resulted in "CFS" was that very same virus identified in his "soon to be called CFS" cohort, then... from his perspective, "HHV6A" might constitute the primary cause of that illness entity.
    And eradication of that variable should be the logical choice to revert the overt manifestation of that particular illness, regardless of whether XMRV is present or not.

    Just speculating here, and trying to make sense of this strange situation.

    ReplyDelete
  30. Erik, I have always supported the WPI. I'm not going to keep addressing the same things over and over with you. Think most pple get it.

    ReplyDelete
  31. Do you think "most pple get it" is adequate redress for a self-contradiction?

    Can't you at least grant them an exemption?:

    "CFS slams the door on any understanding, concern or funding. Only a sadist would try to justify or promote "this illness" as CFS...
    ...except for the WPI, in case it is completely scientific, accurate and worthy of winning the Nobel Prize" ?


    And perhaps an exemption for CFS Patient Advocate?
    Or does he continue to be sadistically insane?

    ReplyDelete
  32. Erik, "This illness" to which I refer is ME and should not be called CFS. CFS patient advocate can advocate for CFS. WPI doesn't promote CFS, just used the term in research and explained the background in an addendum, which I understand. Not going to go over this again and again. The research findings should have made an impression regardless. Yes most people get this. So perhaps you should discuss it with the 73% of those who voted in the Globe poll for anything other than CFS or ME/CFS.

    ReplyDelete
  33. I recently watched "Under Our Skin" and it put together a lot of puzzle pieces for me of the crappy politics and corporate control that are at play.
    You could substitute ME for Lyme, and the names of the doctors that have been discredited and harrassed, and have it be a film about ME/CFS.

    It all started in the 80s with the right to patent organisms.

    I don't wish to cast aspersions, but isn't it interesting SIngh has a patent on XMRV and did a sudden about-face? I may be grasping at straws on that particular case, but really, watch the movie if you haven't, it explains a lot.

    ReplyDelete
  34. Excellent post.
    Sadly I suspect Kent Heckenlively's remarks are near the truth.

    I would not have believed the complicity in Science/medicine were it not for having followed Lyme Disease controversy for some years.

    Ken Leigner's letter to Institute of Medicine is very revealing

    http://www.ilads.org/news/lyme_press_releases/iompanel_lyme.html

    'Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field. Laboratories that test extensively for Lyme disease, including use of direct detection methods such as PCR, have found themselves subjected to concerted smear campaigns and harassed. Whereas PCR is a well-accepted method in virtually all other infectious diseases, its clinical use for Lyme disease has also been marginalized. Direct detection methods developed more than a decade ago by some of this country’s finest physician-researchers and biomedical research scientists (Dorward DW, Schwan TG, Garon CF. Immmune Capture and Detection of Borrelia burgdorferi Antigens in Urine, Blood, or Tissues from Infected Ticks, Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170 & Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp L, Luft B. Detection of Borrelia burgdorferi antigens in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft BJ. Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010-5) have been moth-balled, I believe, for political and medical socioeconomic reasons.'

    'The Tuskegee Experiment involved about 400 subjects. Lacking the taint of racism, nonetheless the “mainstream” handling of chronic Lyme disease affects far more people; it would be a fair estimate to say, Tuskegee X 10,000 in the United States alone. Furthermore, the standards held out by the CDC and the IDSA have worldwide influence.'

    'In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.'


    All sounding too familiar!!

    ReplyDelete
  35. I was interested in reading about Dr. Peterson and HHV6, because someone sent me this today:
    http://www.springerlink.com/content/mt6u685462605418/

    "Epstein-Barr virus encoded EBNA-3 binds to vitamin D receptor and blocks activation of its target genes"

    I'm too foggy to totally understand, but it could describe a way in which XMRV or HGRV or whatever retrovirus it is and HHV6 work together in some cases.

    ReplyDelete
  36. The history of Lyme disease is similar to the history of CFS in many regards.
    A name was appended for the purpose of researching a specific set of parameters, but the dataset was broadened until the original entity is all but lost.
    Until XMRV came along, the sheer force of numbers almost overwhelmingly made "CFS" become Lyme disease, whether it was or it wasn't.

    Which makes a good statement why ""majority rule" has no place in science or medicine.

    ReplyDelete
  37. I was Dr. Peterson's patient for 6 months during the mid-1990s. Among other things, he tested me for HHV6-A, to which I tested positive. At that time he told me that its was his opinion that eventually HHV6-A would come to be regarded as "*the* cause of CFIDS." Of course, that was way before XMRV hit the scene.

    ReplyDelete
  38. It is political. The timing smells---the CDC released its negative study just before the Fourth of July (how patriotic!), Science asks for a retraction just before Memorial Day Weekend, four negative studies are released just days before Christmas. This is a PR campaign. Ponder this:

    Marcia Angell, editor of the NEJM for 20 years writes, “It is simply no longer possible to believe much of the clinical research that is published or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion which I reached slowly and reluctantly over my two decades as an editor of the New England Journal of Medicine”.

    ReplyDelete
  39. New blog post -- www.cfsnovel.com/blog

    ReplyDelete
  40. Chris, Thanks for another great post. So much to thing about.

    I've recently realized a political quote was appropriate for this whole mess. "It's the economy, stupid!"

    The desire stuff the cat (Replication Competent Retroviruses) back in the bag is economic for several reasons. I agree with Kent that big pharma is one party interested in burying this.

    In addition, it occurred to me that elections are coming up and the economy is of huge concern.

    The country has had numerous disasters (floods, oil leaks, deadly tornados - requiring federal funding. To think what would happen if the biotechnology/pharma sector/academic research and government agencies had to address the fallout from infectious retrovirus(s) being transmitted to humans via vaccines and biologics is beyond me.

    Instability in foreign governments keeps defense spending increased.

    I suspect the budget to silence this as long as possible is quite large and it is coming from numerous parties with vested interest.

    Given this scenario, what is it going to take to change it?

    Food for thought... ~ JT

    ReplyDelete
  41. As we saw with HIV-AIDS, it is only when
    "Fear-Of-Acquisition" exceeds "I'm-Not-At-Risk"
    that "We-Need-To-DO-Something" begins.

    ReplyDelete
  42. @Erik...

    That could be easily accomplished when people with ME/CFS who appear healthy along with their family members donate blood en masse. Also, be sure those with Gulf War Illness, Lyme, Autism, Fibromyalgia, and their families donate as well.

    While this is not physics, Newton's Third Law of Physics applies. For every action, there is an equal and opposite reaction. Orchestrated action against XMRV is evident. The equal and opposite reaction is yet to come.

    I doubt anyone wants to go this route but those orchestrating the 0/0 study publications, media manipulations, and playing with the CDC and NIH websites are going to force patient's hands.

    99.9% of patients would not dream of doing anything like this but as we saw in the HIV/AIDS case, it took time. According to Frank Ruscetti's quote (can't remember it exactly) If this were HIV, it would be 1983. Testing of the blood supply in the US and Japan did not start until 1985.

    Anyone want to donate blood? I hear there is a shortage......

    ReplyDelete
  43. No one is afraid of CFS. We cannot even muster up much concern, much less fear. You know, those hysterical patients with abnormal illness beliefs who now think they have another virus?

    ReplyDelete
  44. I was working in San Francisco when the "attitude shift" to really do something happened.
    I had many friends in the health care profession, and they told me about it.
    The rumor was that a hard core group of AIDS patients had decided they had enough of being put off, and began deliberately setting out to infect as many heterosexuals as possible.

    No, I cannot "prove it". But stories circulated of encounters from various bars and social gatherings that seemed to confirm that a deliberate effort was underway.
    Even if the stories were "planted", this still had people petrified with fear, and the pressure on the medical profession to ACT responsibly in order to convey that the disease was being taken seriously was almost palpable.

    The climate really shifted at that point.
    Doctors themselves became frantic and demanded that real research and treatment was needed.

    It seemed like a pleasant enough legend that the medical profession decided on their own to respond, but having it happen at the same time these stories went through suggest this might not be the case.

    ReplyDelete
  45. @Jill

    Those who know the truth are very afraid. Why do you think they're going to such great lengths to cover this up?

    The general public is blissfully unaware. Only those who suffer from or have family or friends suffering from neuro-immune diseases fully comprehend the devastation.

    ReplyDelete
  46. Bill and Melinda Gates have deep pockets and they fund malaria and HIV research all over the world. Let's ask them to fund WPI.

    Warren Buffet and his family have deep pockets and are compassionate people who do not engage in conspicuous consumption. Let's ask them to fund WPI.

    ReplyDelete
  47. Kent Heckenlively is spot on.

    After this big hit to the chops, it seems pretty obvious that we're going to have to do this ourselves; and civil disobedience might be worth considering.

    I've read others talking about CD lately and want to mention that those well enough to take action should expect jail time, fines. This varies depending on where you live so ask around.

    Another issue to consider is that corporate-controlled media won't be covering our "uprising", so we'll need to inform social media like DemocracyNow (DemocracyNow.org) in New York City as well as The Nation, Truthout, Truthdig, etc.

    Those who take action need to believe that standing up is the right thing to do to protect everyone on the planet and do it for that reason alone. Even if you are the only person that shows up, you will have impact.

    Also worth mentioning is that civil disobedience doesn't mean violence. If we're going to get out there, we have to be peaceful.

    As WPI, Kent, and so many others have inferred...this is bigger than ME/CFS. If we can form alliances and begin to partner with other groups with neuroimmune disease, we'll all benefit.

    ReplyDelete
  48. Anonymous, I agree, but it is the fear of the public that drives it. And even in far too many cases friends and family do not get it as CFS provides a layer of protection. Lenny's attribution study proved it - exact same history/symptoms as case studies and drs still downplayed and kinda blew off those who had a CFS diagnosis. It shouldn't matter but it does. Trying to create some ME/CFS construct won't have an impact in the medical world as it will be CFS with ME added and won't make any material difference.

    ReplyDelete
  49. @Oerganix....

    Bill and Melinda Gates are intimately tied to the vaccine industry due to their world-wide vaccine programs.

    Would love it if Bill Gates was aware of XMRV. Not sure what he would do if he knew.

    ReplyDelete
  50. Jill, please stop with the ME/CFS bit. When you only have a hammer, everything looks like a nail. Get a few more tools and think creatively. People won't care what the hell the disease is called if they think they might get it.

    ReplyDelete
  51. @rendere

    I have been told by someone with a major news organization that they are not being controlled. This person has ME/CFS and has given me substantial information to back up her claim.

    She states that those in the media just are not convinced that CFS is real anymore than they are convinced that XMRV is real.

    Now the medical/scientific journals are another story.

    Provide enough evidence and the TRUE journalists will work through it. Junk writers posing as journalists will continue to write junk.

    The trail is there. It a huge challenge for non-scientists to understand the science of retrovirology and immunology never mind discerning fact from fiction.

    There are gold nuggets to be found but they will not come easy and most likely not without the collaboration of professionals with varying backgrounds. Translation from scientific geek speak will be critical for the non-scientists to publish convincing articles.

    Coffin's repeated use of the word "contamination" is one example of how one word can mean different things to different groups. To him, recombinant retroviruses are contaminants. They would ruin some of his research because they are not supposed to be there. However, if one of these recombinant retroviruses "gets out" of the lab and into the general public, they are no longer a "contaminant" but a very real public health threat.

    The routes by which this could occur does include vaccines.

    ReplyDelete
  52. Anonymous: We're talking about the fear factor. It is not about thinking creatively but scientifically. The point is that they won't be any more afraid of getting ME/CFS than they are of getting CFS.

    ReplyDelete
  53. Yes, please stop Jill. You've made your point and now you're just getting on everyone's nerves.

    ReplyDelete
  54. Everybody loves a Big Mac, but you couldn't give one away when people think it might be tainted wtih E coli.

    You can't even get people to go into McDonalds when that happens.

    ReplyDelete
  55. Anonymous, Apparently you didn't get the point so tried to clarify.

    ReplyDelete
  56. Hey Jill, there's more than one Anonymous on this site. And we Anonymous's are getting bored with your preaching.

    ReplyDelete
  57. Please stop, Jill. You are like a broken record.

    ReplyDelete
  58. The truth is immutable. Sorry if it bores you.

    ReplyDelete
  59. Thanks again, PA, for your thoughtful and considered analysis. Answers to your questions remain a mystery to me, too. I am alternately discouraged and galvanized. I feel too ill to act. Please tell us that Dr. Jonathan Kerr is not really packing groceries at Sainsbury’s.

    ReplyDelete
  60. Jill, you're truly both hilarious and pathetic at the same time. About 10 posts ago you said that was going to be your last post. Clearly you have some bizarre need to have the last word, so I'm sure you'll be back.

    Flip the record over.

    ReplyDelete
  61. To Erik, yes. However, not if a correction is warranted or just to cower to bullies who can only resort to insults. Have been at this too long to back down to those who play these games.

    ReplyDelete
  62. Thanks Chris for another amazing post. It is good to hear it confirmed that WPI will never give up on getting to the heart of the disease and real treatments!

    Dr. Mangan at NIH has said that there will be no funding increases for ME. There are powerful people in our government and without who are making sure we and the science are crushed. We must be like WPI and never back down! AIDS was pushed under the carpet until the patients created a ruckus. We've got to all speak up and act up too, including the bona fide scientists. It's our only hope. Silence = Death.

    ReplyDelete
  63. I'm sending $100/month to WPI.

    ReplyDelete
  64. Jill, your last post was mistakenly misdirected at me.

    Please remember than I never post anonymously.

    I always identify myself.

    ReplyDelete
  65. The public may not be scared of CFS.

    They might be scared of autism and cancer.

    ReplyDelete
  66. I wonder Ms. Mclaughlin (and others) how anyone can hope to recover, even partially, in a home filled with bitterness and anger?

    ReplyDelete
  67. >
    What is it about this disease that frightens people and puts them off? Can someone explain to me the unexplainable?
    >


    It's 'cause this funny little CFS illness is like something right out of a Monty Python flick.

    http://www.youtube.com/watch?v=KNvIQpGuPrg

    ReplyDelete
  68. CFS doesn't frighten people. That is the problem. We will not move forward with CFS, because of all the misinformation and fatigue baggage.

    ReplyDelete
  69. Wake up! CFS research threatens corporate profits. We live in an oligarchy now, where the power elite only care about the bottom line. All else is collateral damage.

    ReplyDelete
  70. CFS might not frighten people right now.
    But it will.


    They could have named it
    "Hypochondria-Hysteria Syndrome", which they probably wanted to. But it doesn't change the illness one bit.

    It may take a bit longer, "Hypochondria-Hysteria Syndrome" will eventually scare the snot out of everyone who sees what it does.

    ReplyDelete
  71. "The illness" is the issue. CFS is a fatigue syndrome that can encompass a wide range of conditions. It is not ME, so CFS will go back and forth. As in, a retrovirus hasn't doe it, so what would? Yet the goal seems to be more about promoting and defending CFS than solving problems and having patients appropriately diagnosed. Wonder why that is.

    ReplyDelete
  72. Hyde, Parish and Shelokov said "the illness" was ME, just before it got called CFS.
    Why, even the CDC agreed, by having ME as one of the names under consideration by the Holmes committee.

    So... "CFS" is not the fatigue illness you claim. Every time you assert that the name needs to be changed, you reaffirm this.

    If CFS really were the fatigue illness you tell people it is, "CFS" would be the perfect name for it.
    No need to change it, so you would have nothing to complain about. Not unless CFS is ME.

    ReplyDelete
  73. When do we get to the part where you start saying "It has been explained to you many times"?


    Really looking forward to the next stage.

    ReplyDelete
  74. Erik It is not about explaining to you as that we know is futile. It is sometimes correcting misinformation. CFS is not what I say it is or what you say it is. It is not what it is that you say you have. Nor is ME/CFS, with all the different meanings and interpretations, and CFS/ME.... It's a garbled mess and waste of time. Which is what some seem to want.

    ReplyDelete
  75. CFS happened exactly as described in Osler's Web.
    The term CFS was given to a "typical outbreak of ME"
    Plain and simple.


    Nothing garbled about it.

    "Which is what some seem to want".

    ReplyDelete
  76. It was ME. CFS causes the stigma and misunderstanding and trivialization. So the illness is ME and should be called ME. Simple. Other than to the agenda-driven who want the CFS obfuscation to deny adequate recognition and treatment, obliterate the history and obscure the worldwide incidence.

    ReplyDelete
  77. So.... the authors of the Canadian Consensus Guidelines possess this malevolent "agenda" you speak of?

    Are you trolling ME/CFS groups to find people to help you demolish them, and all others who wish to use the ME/CFS term to clarify how their ME was called CFS?

    Or, are you accusing all such people of having this same malignant "agenda".

    ReplyDelete
  78. If the accusation fits....

    Again, your assertions are not accurate. Trying to use ME/CFS to clarify? It does just the opposite.

    No need to troll, it is rather blatant.

    ReplyDelete
  79. You seemed to think that my usage of the term CFS put me at odds with those in that poll, who wish to change the name in order to indicate that their CFS is congruent with ME.

    But I've been saying that all along: "CFS is ME"

    Do you understand that my stance is in agreement with theirs, and yours is not?

    ReplyDelete
  80. Erik - Whatever your stance (to which you are entitled), your premise is wrong, thus the rest is as follows. PIn the poll, eople voted against both CFS and ME/CFS, regardless. People have universally hated CFS, yet you are always there rallying the troops. CFS was the original betrayal, now ME/CFS is the ultimate betrayal.

    ReplyDelete
  81. If you're going to shoot all the "ultimate-betrayers" who ever used ME/CFS, you're going to
    need a lot of bullets.

    ReplyDelete
  82. So be it. But another twist won't work. It's not using it as a term on occasion, it is promoting it as a name change or diagnosis. Complicity is not advocacy, and that's all we've ever had. Create a false construct, get people to accept it. When people catch on, then try to attach it to the real illness and sell the package as some solution or compromise. We see through this too, no matter how many do not or go along for whatever reason.

    ReplyDelete
  83. There was once a cluster of a "mystery malady" that possessed all the primary determinants of ME, according to the ME literate doctors who analyzed the data from this cohort.

    But it had a few things MORE, that weren't known to be part of ME, like "HBLV" (HHV6A),
    Low NK cell function, high platelet debris, inverted CD4/CD8 ratio, UBO's on MRI scans, low red cell mass.. and a few other things in addition to those primary determinants of ME.

    The name this illness had at the time the Holmes committee took it under consideration was "The Raggedy Anne Disease" or "Tahoe Mystery Illness".
    Although ME was one of the terms under consideration, the Holmes committee chose CFS.
    Perhaps to trivialize the illness.
    Perhaps because the illness had some viral and immunological elements that weren't known to be in ME.. or perhaps both reasons.

    But this is how it happened.
    All of it was documented.

    ReplyDelete
  84. I hear from survivors of Tapanui Flu that their sudden onset occurred with a HIGH fever.

    The Raggedy Anne Disease, diagnosed as ME and then immediately used as the basis for the new syndrome of CFS consistently had subclinical temperatures.

    It may be convoluted, but need not be any more confusing than people care to make it.

    Then it comes down to your motives for indulging in deliberate obfuscation.

    ReplyDelete
  85. Karen Ravitz and I, Sharon Stapleton, were specifically told at the entrance to HHS that the meeting was "CLOSED TO THE PUBLIC". We knew that was wrong and I started screaming and Karen put it out on Facebook and then called Marly Silverman to come get us in. Hard core proof that people were indeed told this was a closed to the public meeting. Since Karen and I KNEW this was not the case, and she being from New Jersey and I from New York, we do NOT put up with cr_p. I started yelling and demanding Wanda Jones to get down here and then a miracle happened and two chairs came available for Karen and I. It was apparent to me that this government stupidity was to keep people out and especially those of us who are considered rabble rousers. Had the government done their job correctly they would have sign-in and sign-out sheets to keep a proper head count for fire code reasons. Basic and common sense. But they did not do that. How many people came and did not know that this was an OPEN meeting and left after having traveled a great distance? This was government piddley-@ss game playing at its best. I supported the Feds as a government contractor and KNOW how things work and the stupid little games played. To me, CFSAC is a total waste of taxpayer money and the time and energy of the sick. Where is Sebellius in this? Has she signed anything? Where is the money??? Funding for me/cfs and retrovirus/other pathogens/etc. research is what tells us the governments ARE doing something of value.

    ReplyDelete
  86. Sharon, Thank you for this. This is totally illegal. And illogical. Other than the meeting that occurred when the Science paper was published, the meetings are sparsely attended at best, so this capacity or fire code violation is bogus.

    But if someone does this, ALWAYS get their name and Dept. - that way they and their Dept can be held accountable.

    ReplyDelete