Monday, December 20, 2010

The Mouse that Roared*

Many of the participants of the Blood Study group advisory committee meandered off to have a little dinner and feel good about themselves. Their self-assessment mirrors a comment overheard recently in a NYC coffee shop: "I feel good about myself and I think I do a good job." The rest of us go back to our life of illness or illness support. It is a grim life, made more difficult by having to go back to confront illness reality after a day with these FDA losers. It is this disconnect that is really irritating - the disrespect for this illness that individuals like Coffin and Stoye display publicly. They are playing their little games, disguised as science - and their successes in their careers come at the expense of patients. They do not give a shit. This is what I dislike. It is the contempt and the disregard and the ignorance of the consequences of their actions. It is in this way that they are modern people - self-pleasurers.

On this December 20th, a story from November 2009 has taken center stage and has become a "realization". A year ago a well-known cancer virologist was approached in the halls of the NCI by another virologist and advised to "distance himself from the WPI" - that "they (unknown elements) were going to take out the WPI". Today this story resounds more convincingly - and gives some credibility to the lies that have been circulating over the last few months.

The news today was not good for ME/CFS patients - not good for their health. For the moment the largest exposure (what is most suspicious) of these "smoke 'em out" retro-virology papers is the timing. These scientists chose to have their XMRV contamination studies released five days before Christmas, a time when ME/CFS patients are under the greatest stress of the year. ME/CFS or XMRV-related illness is a stress-related disorder of the first magnitude, and many patients, like my daughter, go down for the count during this time, and take weeks to recover. It is a very sad and painful time for ME/CFS families and friends. ME/CFS is a very nasty illness with a great fragility and unpredictability to it. These virologists, in their little ivory towers, can only think of these patients, as "complainers", resenting the "harassment" email activity of these desperate patients, now desperate for twenty-five years and counting.

It was quite noticeable in the conversation with Dr. Stoye the other afternoon that he has zero idea of the outlines or the seriousness of this illness - and no desire to find out, preferring to splutter and grimace instead. (Can one imagine that being true with Salk and polio patients?) Complete disregard can also be placed at the feet of the stuff shirt Dr. Coffin and the haughty and diffident Dr. Huber, neither of whom show the slightest knowledge or interest in the reality or character of this patient group. They are too busy talking about themselves, preening and mincing about.

In the unlikely event that these studies knock out the association with XMRV, we have a larger moral issues here - a moral issue parading in the name of science. These scientists in their "need to know" and "to win" are perfectly happy, in their deep ignorance, to trample on the feelings and spirit of this patient group. At the very core, they are an unfeeling, heartless bunch of bastards. Is this what science has become?

This disregard is only the most obvious example of the evil that is taking place now. It was obvious at the Blood Study Group Advisory meeting that there are larger, even unknown, issues here that various sides are contesting furiously - with the gloves off. At times it is difficult to determine if this is normal academic infighting, where scientists fight to the death over limited or non-existent stakes. Or whether, on the other hand, there are much larger issues here - issues of proprietary rights, influence, credit, power and, of course, money. For a long time now it has seemed that an aggregate grinding sound of anxiety and exacerbation has filled the hallways of university labs in the US and the UK over the WPI discovery. This has been written about before on this blog. Now comes the serious push to discredit ME/CFS.

This effort to discredit has been going on since October 2009 - and probably before. The first manifestation of "difference" - in hastily organized papers in the late winter of 2010 - was to knock out the Science paper. A number of people went down for the count in this exchange, including our friend Jonathan Kerr. These highly publicized negative worthless papers were dragged out over the summer. Finally the Lo/Alter paper was released and at this point things began to get serious.

Something big is at stake here and the struggle for control is not a friendly one. The opponents of the association of MLV-related viruses are intent on doing one of two things. The first possibility is to completely knock out and bury the association that a retrovirus could be attached to this illness and other unknown illnesses. The second is that they want to blunt the XMRV connection, bury it, and wrest control of the entire issue for themselves. From a scientific point of view the first option doesn't make a whole lot of sense. The ferocity of the fighting indicates that the second possibility is more probable. Large powerful elements want to wrestle this retroviral connection to neuro-immune and other illness from the WPI and their collaborators. The negative consequence of this for the patients of ME/CFS is not calculated in their bargains.

For the last few months, and longer, every step has been taken to isolate the WPI and starve them to death. All funding requests have been turned down based on the idea that the XMRV association is experimental. (Unfunded studies have to be completed to apply for funded studies.)

The release of these papers and its immediate uptake by the UK and soon the US press (think of our vaunted NY Times and of these "riled up" CFS people) indicates that the time was calculated for greatest exposure and to neutralize the level of the response. It was a good trick and one has to admire it for its connivance/deviance. These contamination studies made it very quickly into the major news media, especially in the UK. Someone was waiting for them - it was a set up.This was the hard take-out that has been expected for some time now. This is just another chapter.

The WPI has always been weak on the communications/public relations front. They are understaffed and poorly funded, particularly after opening their marvelous new building - an act that only further needled their enemies. At the moment the WPI is unprepared to strike back on this recent take-out, but things are going to change. As they gather forces and consolidate the means of aggressively pushing their agenda, the roll back will happen.

Let us imagine for a moment that the worst has occurred (the doomsday scenario) - that the XMRV association with ME/CFS has been broken and smashed. Let us imagine the unimaginable, that the UK whatshername and Coffin and Stoye have bested the valiant Dr. Mikovits. Is this the end?

We have to remember that it was the WPI that got us here. With all due respect for Klimas and Natelson and others, the WPI has gone farther and faster in their research - and without much institutional research money. Try to remember what it was like before the Reno conference in March 2009. At this point, a direction was set - entirely by the WPI and their then Medical Director Dan Peterson, and it has been a fast ride since then. Can anyone imagine that this will change? The XMRV was an unexpected gift - and it is a gift that is going to keep on giving. If it hadn't been for the October 2009 paper none of this additional broad-based research - Singh, Hansen, Bell, Cheney, Klimas, Montoya, de Meirleir - would have occurred. Whatever else happens the Whittemore Peterson Institute got the ball rolling, and now it is impossible to put the genii back in the bottle. As Dr. Alter said, if it is not XMRV, we have to find what it is. And then there are all the immune panels and cytokine studies. Soon it will be on to treatment trials.

Word comes late in the day of a comment on these five studies from the researcher/clinician Dr. Kenny de Meirleir (published on Merutt.wordpress):

“The contamination by mouse material was excluded in our study, that of Lo and that of Lombardi et al. We are not using PCR as a basis of the test but human prostate cancer cells that do not express RNase L so the virus from patient’s blood can grow in it. We also sequence the virus and I can assure you it is not mouse material. Governments and insurance companies are horrified by the idea that there is a new retrovirus out there that has infected 10 times more people than HIV up to date. My preliminary data show that the virus does not grow in culture anymore after Nexavir + GcMAF although the procedure was identical to the pretreatment culture. In the next months more will come from our side. A study with healthy blood donors, ME patients who got ill immediately after blood transfusion and ME patients who gave blood after they got ill will be published in the first half of 2011.

What these 5 are doing to the patients is a crime against humanity.

Kenny De Meirleir”

*a 1957 UK film starring Peter Sellers, where an impoverished backward nation declares a war on the USA hoping to lose, but things don't go according to plan.

67 comments:

  1. Thank you, Chris, for laying out your thoughts on the big picture. Today's "attack" was a shock. It helps to be reminded that big things are in play here and that this is far from over. Go, Dr. Kenny!

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  2. Thank you, Patient Advocate. You said, "For the last few months, and longer, every step has been taken to isolate the WPI and starve them to death." I know this is true, and it saddens me. I think one of the biggest problems is that patients take WPI for granted--that it will continue to do what it has done in the past. I certainly hope WPI continues to prosper, but there are no guarantees. They need financial support in order to do what they seek to do for us. If they do not receive that support, they can go down, and with it, my hopes for treatment or even cure for M.E.

    If we value what WPI is doing, we must get them financial support NOW.

    Patricia Carter
    XMRV+, 24 years M.E.

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  3. Christmas is a time of HOPE; thanks for giving us this present!

    Singh's research and this article will get me thru this week of Christmas, and I hope it helps all the other patients, too!

    Do not give up now; the naysayers are doomed.

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  4. Remember WPI in your year-end giving and consider saying "support WPI" if anyone is still wondering what to get you for Christmas. Oh, and add it to your Christmas letters as a request if you haven't sent cards yet.

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  5. Thank you, Chris, for calling out Evil . . . the underlying outrage for 27 years is that "they" -- whomever were the powers that be in the NIH, CDC and centers of money and power in other countries - they have NEVER taken our illness seriously. As you so well put it, we've been pawns in games of politics, power, ego, money . . . So many times I've told friends that I could handle being ill for life if I knew that at least it was taken seriously, recognized for what it is, and if serious efforts were being made to understand it. People are disabled by many other illnesses beside CFS, but only with CFS are we ignored, derided, used, sneered at . . . before XMRV, most of us, I think, would have been happy just to be respected as people who are seriously ill; I'd quipped to friends, that in the world of CFS, the AIDS slogan, "Be there for the cure" reads, "Be there for the name change."

    michael

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  6. Chris, could you elaborate on "Dr. Alter seems to have unwittingly participated in this plot to dismantle the October study." and the "changed Dr. Alter"? We first learned about Alter when he 'leaked' that slide over the summer. What was he involved in before that? Did he get involved with Lo and Komaroff thinking that they wouldn't find anything?

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  7. Absolutely spot-on analysis. Thank you so much for putting your thoughts into this and sharing it with us. I found myself jumping up and down, saying "Yes! Yes! You are so right!"

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  8. Last Spring, Dr. David Bell asked all CFS patients and their supporters to send the WPI $10.00. If everyone did this worldwide, it would give the WPI the support they need and deserve. I'm mailing another check tomorrow and challenge everyone to do the same. Screw the government! We can do this.

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  10. This is starting to remind me of Stephen King's "The Stand."

    People who choose selfish gain over the good of all are coming out of the woodwork. It's disillusioning and disheartening. But at the same time, we see real heroes, who are not afraid to stand against the powerful who would hide the truth.

    Thank you as always, Chris, for your advocacy. You are one of the heroes.

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  11. 'Not sure I agree: option 1 makes perfect sense from insurance's view, and even Coffin-Huber would have to fight CDC and the powers over that. But you can't discount the effect of egos and institutional rivalry either. While Salk and Sabin were treating a very visible epidemic, they were both blindly stubborn and ungracious competitors. Your hallway insight this post was brief, but it was great that you shared it. Doesn't sound like what we'd like in our U.S. health services, but something from Bosnia or Afghanistan - everyone for themselves.

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  12. 65 years ago, between 1945 and 1946, took the infamous Nuremberg trials. Giving rise to several processes, one of the most important was the "Trial of the doctors, " whose most important arguments are:

    1.The health of First Instance, proceedings against 24 doctors accused of conspiracy, war crimes and crimes against humanity, including forced sterilization and mass of patients, the murder of 300,000 patients, especially in psychiatric hospitals for the Program euthanasia Aktion T-4, collaboration or direct involvement in the confinement, torture and extermination of thousands of people in concentration camps and the realization of the medical force coercive, harmful and lethal against prisoners of war and civilians and patients in hospitals and other medical institutions. [1]


    It is possible that the crowd control and the means for this century are much more subtle and difficult to detect.

    But is there any of you who do not feel that your life, your home, your body, your shoes,..., are a concentration camp?.

    We have 24 seats, some are already occupied. Of the other criminals, those who run the wires, we will never know the data.

    We can ask for life imprisonment for crimes of the visible heads to do the concealment of the truth for personal gain, confinement in psychiatric units, and sadistic treatment and experimentation with drugs of dubious effectiveness in their contempt for humanity as a whole.

    We are more, we are united, we are desperate,..., and we have very little to lose. They robbed part of our lifes ...

    ... We play with advantage.

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  13. Regardless of the outcome of XMRV -WPI have unleashed the floodgates. Top scientists are engaged - it is now up to us to maintain the momentum - and if need be re double our efforts to find answers to this devastating disease.

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  14. Yes, it was a set-up and the corporate media in the US has been given the word from the powers that be to get on board, so we can expect more piling on in the next few days. The mystery remains: why do they want so badly to disappear this illness and those who truly want to find its cause and treatment?

    So, is Alter now going to be taken out, too? And Lo, Komaroff and the Ruscettis?

    And who was it that wanted Dr M's job? Where does Dr Singh and her research fit into this scenario? Was her lab "contaminated" when she found XMRV in breast cancer? If so, why only 24%?

    Thanks Cris, for keeping on. I am also one who finds this time of year the worst of times, but the successes of Dr Deckoff-Jones and Dr Snyderman have given me some cheer as of late. I look forward to Dr Mikovits' presentation on the use of antiretroviral drug treatment on Jan 17. I fully expect these buffoons to try to spin that negatively, too. They've already tried, but they are getting more desperate and more ridiculous in those efforts.

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  15. i thought john coffin was kind of on our side?

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  16. Every spare penny I have is going to the WPI.

    We are fighting for our lives here.

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  17. sure was devastated today and my friend sent me your column. thank you for expressing so articulately all the things i can't. christmas started this past weekend in terms of activity and i have oh so many things i'm supposed to do in the next week. today i was as sick as i've been. your article is so spot on. and as for de meirleir, thank you to him too for never-ever giving up. ~LT

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  18. The beastly triumvirate of Stoye/Huber/Coffin reminds me of Yeat's "Second Coming" and the line the "best lack all conviction while the worst are full of passionate intensity."

    Funds are the best big guns to take these beasts down.

    Elisabeth

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  19. Fantastic piece Chris, thank you! There was a pre-medicated co-ordinated vicious attack on XMRV and WPI/NIH researchers yesterday, it was simply put; ugly. What is almost worse is that it was poor Science as far as I can see, science must be allowed to uphold the truth, none of us patients are wanting anything other than the truth. There needs to be some comeback on those who intently get in the way of the truth for their own ends...being ego, power, greed and yes, money.

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  20. 2Kimlemoon: I'd like to give Alter BOTD. I don't think he went after nothing to take anyone out. Lo, with his DOD/FDA pedigree, who knows. They don't even agree whether it backs the Science paper. IMHO, it doesn't without more data. I have wondered why they, of anyone, didn't succeed in finding XMRV, then went their own way. It's alleged Alter didn't do all he should have and because he was NAS, got a pass. BOTD - why? If PA heard about this take-out move, 'gotta wonder what Alter was hearing. Sadly, I think he's tried to stand up for WPI and lost to Retrovirology, twice, but yesterday gave more insight into his BPAC speech; whether or not he believes XMRV isn't 'X', he probably knew this was coming. I doubt Coffin was an innocent choice for this grand slam either.

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  21. If there are good things to take to bed this a.m., it's that this didn't make MedPage, and I believe Silverman, Peterson, DeMerlier, and Kerr are involved in new efforts Down Under. KThough remember, Reeves has Aussie friends too - this craps's worldwide. (I can see Unger smirking at her new desk.) No doubt there were drug executives unhappy with the news bash, for their own sake. They, if anyone, can help ensure Lipkin's work is followed through. Hemispherix aside, you can't underestimate their corrupt power should they use it.

    One of my concerns is who's going to be on this board of friendlies going over the NIH grants, whether THEY would find it in themselves to fund WPI, and who'll have the veto power. Will CAA befriend Jim Jones? Stay tuned... Chris

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  22. Thankyou PA for your coverage of this issue and wise words. You give me strenght to not lose hope. Keep up the good work.

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  23. Just read this and the statement from the WPI and made a donation. We have to keep on keeping on - fundraising, campaigning and awareness. Thanks so much PA. I especially appreciated the comments re the stress that Stoye et al cause and the impact it has on the illness. I'm still enraged by the 5 papers published yesterday - seems such a desperate and transparent attempt to discredit WPI et al. "These contamination studies made it very quickly into the major news media, especially in the UK. Someone was waiting for them - it was a set up" - questions need to be asked of the Science Media Centre here in the UK. Regards to all, Sarah 20+ years ME

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  24. Thank you P.A for your words of wisdom and summary of the situation - written with intent, intellect and an objective view of the situation. The politics behind these 'attacks' is all but apparant and I for one call for everyone to donate to the WPI in these hard times. I pray for good science to win out but The Science and Media Centre - with Wessely at it's heart needs to be taken out and obliterated, spin is at the heart of the game and the WPI cannot compete with such a devil of spin and disguise - we need to help them all we can.

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  25. As a patient I'm more aware than ever that we ALL should DONATE NOW to the WPI.

    We will not - NOT - give up our fight.

    We need research with a "real" purpose to find out the mechanisms of ME/CFS to continue. WPI is all about really trying to help us.

    Perhaps this study knocked us down today, but we cannot afford to give up now. If they hope or count on us letting our shoulders hang again, they are in for a surprise: we patients and our loved ones will be even more determined to join forces.

    This time these forces should be "money-forces". A force they know we seperately do not possess. But there is power in numbers, isn't there?

    Let's all fight back with our bank account. Even the tiniest amount is more important than ever. Keep your head held high, your spirits up and put your hands in your wallet!

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  26. We in the ME/CFS community felt knocked down yesterday but thanks to you and other champions of the cause I know we WILL get back up again. Thank you so much for all you are doing.

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  27. I know these are bitter times and emotions run high but I must disagree that Dr Coffin is playing a 'game' disguised as science???

    This is a very dark statement.

    "the disrespect for this illness that individuals like Coffin and Stoye display publicly. They are playing their little games, disguised as science - and their successes in their careers come at the expense of patients."

    I would ask how any retrovirologist who finds evidence that XMRV is not real doing ANYTHING to further their career? It doesn't make sense. That's like a banker refusing money...The retrovirology community wanted to find this virus; not surprisingly they've devoted alot of time and money to finding the virus (look at all the studies over the last year) and hopefully they will find it and validate the original finding.

    While some of his colleagues say XMRV is over - Coffin has refused to say that...Yet he is still accused of 'playing games'.

    What I see is a rather fierce battle in the scientific community over XMRV. Thankfully there are objective members who will see this through; one of them, ironically enough, is Dr. John Coffin. Another is Dr. Ian Lipkin. Dr. Singh is another. Dr. Montoya is another. But they are not on anyone's side nor should they be. They are parsing the evidence as carefully and objectively as possible and drawing their own conclusions.

    Unfortunately if they draw the 'wrong' conclusions they may be put on the wrong side and everything they've uttered will now be seen as an attempt to 'get CFS'.

    Perhaps Dr. Coffin will ultimately be seen by some as some sort of mole who had it all planned out how he would seem to be objective at first and then when the time was right he struck!

    I agree that there are researchers collating around different opinions now but I believe that Dr. Coffin still sees the matter as open...

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  28. Erik Johnson Incline Village SurvivorDecember 21, 2010 at 11:40 AM

    You better watch out,
    you better not lie,
    better not distort, I’m tellin’ you why,
    The WPI is coming to town.

    We’re making a list, and checking it twice.
    Gonna find out who’s naughty or nice….

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  29. Stoye is the only SOB that I would take a syringe full of XMRV and stick it up his ass so far that I feel sure it would pop his eye balls. I truly despise someone of his demeanor and think his is incapable of telling the truth or even knowing the truth if it is other than what he believes!

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  30. I'm with Cort on this one. This piece that Chris wrote plays precisely into the hands of the psych lobby who thinks we're depressed or, yes, crazy. I've been sick for 18 years and want answers as much as anyone, but throwing Coffin under the bus was just shameful.

    Does anyone ever dare to consider that there may be other causes of ME/CFS, or other contributing factors, like MOLD (Erik?) or other environmental toxins (as in Tom Hennessy's case)? Are these other factors the things that Hillary Johnson missed or didn't fit into they hypothesis of her overrated book?

    Why is everything caused by a virus or retrovirus? Why does almost everyone think XMRV is THE cause when even Mikovitz hasn't gone that far?

    Why are there approximately 22 million people in the US alone who carry XMRV, but only 1-2 million ME/CFS patients?

    And Erik Mold Warrior "Incline Village SURVIVOR": I'm sorry, but that poem was, well, embarrassing.

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  31. Thanks for another eye-opener. I don't know how this will all shake out and who will end up on what side, but I just made another donation to WPI. I know they can at least find the freaking virus.

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  32. I'm OK with Cort's disagreement; PA smells something and has offered his take, Cort wants to give Coffin BOTD (while Huber is pretty much saying, All-Over). OK. I very much disagree with Anonymous that PA's article plays to any psych' lobby, and definitely that Osler's Web was "overrated." OK, forget the virus aspect: Osler's was a textbook on how the "protectors" of our health officials really work; it's not the first, and far from the last. If WPI's funding wasn't blocked, we might be finding answers to some of your questions regarding other factors. I'm very glad others want to look, e.g., Montoya; just realize there are people who don't want bad news from anyone's corner.

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  33. "'Protectors' of our health officials" - actually, that works!

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  34. Coffin is doing what you, Cort, and the CAA have been doing for a long time. Make one positive move, then follow with 2 or 3 stabs in the back. I call it the Waffler's Waltz, but it's the Dance of Death for many of us.

    It's a disinformation technique that works pretty well a lot of the time. But not all the time, not with everyone. The PA can connect the dots and see the pattern and so can many of us.

    When the attacks are pointed out, the disinformation specialist recoils in mock horror and points to the one good thing he said or did. It's a distraction technique to keep people from keeping track of the other two or three or more attacks you've committed.

    The choice of the word "mole" is especially appropriate, coming from the world of espionage as it does. It's a world of dirty tricks, double agents and secret payments.

    For instance, it's been noticed that you still have an editorial headlined "Dr Mikovits Spills the Beans" which accuses her of breaking the embargo on the Alter/Lo paper. That paper had been discussed all over the world for weeks before she mentioned it and the slides had been placed on the internet and confirmed by Alter as genuine. Many people objected to your continued campaign of smearing her and building up the false idea that she is an unprofessional renegade, unworthy of respect or research funding, but this lie is still there.

    What do Coffin, the CAA and you have to gain by delaying or sabotaging the work of the WPI and its researchers? Money. More time to conduct ritualistic "research" that adds nothing to the body of knowledge needed to treat patients. More time to ask for donations for "the cause". More ego caressing and fondling, arousing the desire to abuse the power to direct, misdirect or deny research funding to the one organization that has cut through the BS and got straight to the nitty gritty.

    Rumor has it that Klimas wanted Mikovits' job at WPI and was steamed when she didn't get it. My apologies to her, if this is not true. BUT she now sits on the board that has denied funding to WPI for further research and has voted against them.

    Some of us keep connecting the dots and we see an organized campaign to starve WPI and destroy the reputation of its scientists and/or steal their work for personal gain.

    A year ago Coffin wrote a positive comment "A New Virus for Some Old Diseases?" and was recorded saying the only way to find out if a retrovirus causes ME/CFS is to do the drug trials and calculate the results. Now he's parroting the wait-another-decade mantra of the entrenched self-interests who want a long, drawn out period of stroking each other and awarding research grants to fellow club members.

    He, and others who delay, are aiding and abetting those who are committing those crimes against humanity referred to by Dr KDM, who is also capable of connecting the dots.

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  35. Oerganix said: "What do Coffin, the CAA and you have to gain by delaying or sabotaging the work of the WPI and its researchers? Money."

    That's just ridiculous. Please try to explain how they'll make money off of this. PLEASE.

    "Rumor has it that Klimas wanted Mikovits' job at WPI and was steamed when she didn't get it. My apologies to her, if this is not true. BUT she now sits on the board that has denied funding to WPI for further research and has voted against them."

    "My apologies to her". What a bunchy of BS. You should be ashamed of yourself Oerganix. Dr. Klimas is one of the few doctors who actually has patients who have completely recovered. (Can't say that about Mikovits or even Cheney for that matter.) She's highly respected and doesn't need another job. Jeez.

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  36. I don't think Nancy Klimas is the proper target for this, either.

    I do think Dr. Coffin has a primary interest in research funding. Is it extreme to suggest that funding for CFS research has long been difficult to obtain?

    Is it possible that Dr. Coffin receives funding from sources that have long frowned on money being spent on CFS research?

    Sorry to say, I think that's quite possible. Certainly no less possible than the idea that he works well together with Stoye, who has yet to provide anything resembling a response on the small matter of the samples sent to a study he co-authored.

    Actually, I'd suggest that Coffin's role as mentor to Stoye is still in effect to some extent. Lo reportedly had to direct defense of his research to both Coffin and Stoye. And I doubt Harvey Alter chose to deliver an unscheduled speech on a lark.

    The rumors and reports that any researchers interested in CFS research have been dissuaded, in one form or another, over the years, are not that difficult for me to believe. When CFS gets $4 million a year from the NIH, I don't see the idea that funding is or can be political, or that Coffin could operate to an extent within a political framework, especially in relation to CFS, as being so nonsensical.

    Anyone who disagrees is free to believe whatever they please.

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  37. http://afaramos.blogspot.com/2010/12/sindrome-de-fatiga-cronica-o.html

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  38. Erik Johnson - Raggedy Ann Disease SurvivorDecember 21, 2010 at 5:10 PM

    Hillary Johnson accurately gathered information using the perspective of the time, and her reporting is absolutely impeccable.
    Osler's Web cannot be rated HIGHLY enough, and this should be required reading for anyone who purports to speak for "CFS".

    We have learned much about mold since then, and it seems prudent to re-examine its role as a significant contributor or possible co-factor.
    But I perceive no contradiction whatsoever between the Whittemore Peterson Institutes findings and my experience.
    The WPI has my full support.

    And HEY, what poem?

    It's an "X"mas carole.

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  39. Cort, you are a very naive person. These guys will get to keep their jobs and future funding if they can bury this association. Every scientist involved has now picked a side. Either they want to continue the research or they do not.

    Anonymous, who is with Cort. The psych's will still think the way they do no matter what. And it's not about XMRV being the cause, it's about doing the research right, and making damn sure if it is or is not the cause. Have you heard of HTLV, only causes disease in about 10% of people infected, and can cause neuro-immune diseases and cancer?

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  40. "The retrovirology community wanted to find this virus"

    That's very funny. You do know how the world works don't you Cort? Everyone diligently beavering away to the right thing. HA!

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  41. advocacy - active support of an idea or cause etc.; especially the act of pleading or arguing for something

    Thank you Patient Advocate. You live up to your name. While you came into this because of your daughter, I think of you as our advocate. Your support is active and strong and compassionate. You are motivated to help your daughter.

    What motivates Dr. Coffin? Pure love of science? Clearly not, since these "studies" are laughably bad. What motivates him? Pursuit of the truth? There is no evidence of that anymore. Who knows?

    What motivates Cort? Why does he regularly make ugly digs and tell lies about Judy Mikovits, Hillary Johnson, and Mary Schweitzer? Who knows? Why his constant attempts to convince unwitting patients that he knows what he is talking about? Who knows? He regularly asks for money but it is clearly more than that. Why would he spread lies about good people who are are fiercest and most effective advocates? Who knows? Advocacy for ME patients is clearly not his motivation.

    Oerganix, while I agree with much of what you say, "connecting" dots without a shred of evidence is just gossip. And ugly gossip at that.

    Patient Advocate, I thank you for this. It eased my troubled mind a bit. Your thoughtful words gave me encouragement and hope.

    Erik- LOVE the Xmas carol.

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  42. A 23 km from Incline Village in Lake Tahoe, is a flame retardant plant. Highly neurotoxic. I just imagine the potential discharges to the lake and think about the testimony of people who suffered the outbreak.

    It is logical to continue in parallel several hypotheses or lines of research. The scenarios need not be mutually exclusive. But I worry about bias criterion ...

    I worry about the high degree of specialization of research in general, because, like everything, is double sided. On the one hand that apparently makes it easier to reach the right conclusions, but on the other there is the risk of excluding variables that do not fall within the protocols. Always missing something, is the human factor, that upset us in some researchers.

    There are four things that I'm sure that makes me doubt the road that follows, (I hope I'm wrong):

    1 .- For the political powers that we are sick we are already dead. They even, sometimes not enough, when there is money involved are very knowledgeable.

    2 .- No cares absolutely nothing to big pharma, in that it gives us more like poison or jelly beans if they keep buying drugs.

    3 .- If it is due to pollution, this has much more to conceal the existence of a new pathogenic virus. And scientists readily silences.

    4 .- An exclusive science is a science blind.

    The only way to survive for us now is to reach out to our immune systems in a non aggressive ,..., for now. then bear retroviral or antibiotics. It would be logical to put emphasis on setting aside resources for research in this direction. (Alfa-immuno-defensins, endometrial stem cells, intestinal tissue transplants, supplements, etc ...).

    Hope you understand I am not opposed to the magnificent work of WPI. They have become visible and we want to heal, they are great scientific heroes.

    But if we want to be alive, and improve, we have to, well informed and think better. Seek ways to build into a single force by common sense.

    This is a peaceful revolution. At the junction of collective informed, educated and unbiased. In the unanimity and the number is our strength.

    If the future will redirect our conscious actions are going to have a future.


    Note: I put my picture because I want to be more than a number. I have no other interest than to heal and return to my normal life.

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  43. Re: Please try to explain how they'll [CAA, Coffin, and Cort] make money off of this.

    It is really quite simple, and should be obvious. If XMRV is shown to cause CFS then the CAA and Phoenix Rising are both out of business; they become irrelevant; they cease to have any reason for anybody to send them donations. Meanwhile, scientists who obfuscate the issue direct research money away from WPI and toward themselves.

    Re: Dr. Klimas is one of the few doctors who actually has patients who have completely recovered. (Can't say that about Mikovits)

    Really, where is the study showing Klimas's patients fully recover? And, uh, Mikovits doesn't HAVE patients. She's not a medical doctor. She has a Ph.D., not a medical degree.

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  44. If you have 45 mins to spare during a busy holiday season and want to hear a great summary about the decline of liberalism in the US, go to: democracynow.org/shows

    Once there, look to the lower right where it reads 'Recent Shows, Monday, December 20'. Listed you'll see Chris Hedges: Death of the Liberal Class.

    Whatever side of the political aisle you're on, you cannot watch this without thinking about the impact on CFS.

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  45. Cort, your illusions of grandeur really do need treatment. Take your side-kick with you - maybe you can get a group rate.

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  46. Anonymous, perhaps you are thinking that research money is divvied up like a big pizza in a frat house - everybody gets a piece and some go back for seconds.

    In reality, it's more like one of those fake "reality" or "survivor" shows where people vote others off the island, off the show, off the team, etc. Those who connive, form alliances and fake friendships often win against those who are honest and straightforward. It's not about sharing the resources equally or fairly, whether the resources are money, prestige, fame or position.

    Perhaps you're not aware that some researchers get hired on their history of writing successful grant proposals - attracting the MONEY. If a guy has lots of buddies who are all on the same page and he can have enough of them on the panels that decide who gets funded and who gets ignored, he has power, influence and -more MONEY. There is a LOT of research money for those who can get it. I was surfing around on a page that showed recently funded studies in cancer research. One of them was several hundred thousand for the study of Tai Chi for pain control for colorectal surgery patients! No joke!

    Suppose the WPI and Alter/Lo work were taken as fact and research proceded from that assumption. It would shorten the time to reach the goal of affordable treatment for all by maybe a decade. So, stalling, claiming that "science takes time" can be used to lengthen the period of time that certain big names can have power, influence and - MONEY. It can also be used to punish or even starve "upstarts" who didn't take their place in line, didn't kiss enough ass, are just too "uppity" to be accepted into the clubhouse or are so "unprofessional" as to think of patients as people instead of lab rats.

    Contrast the sweating and squirming of Stoye when he was 1 degree away from a patient, the PA's daughter, with the accessibility of Mikovits. Contrast the callousness of not caring how many of us die or become more disabled in the interim, or are wounded by this nasty announcement 5 days before Christmas, with the sense of urgency exhibited by WPI.

    As for who "needs" the job at WPI, it isn't about need. It's about prestige, fame, power, getting the credit and the patents (money). To her credit, when Coffin asked his one question of Mikovits, trying to insinuate "contamination" into his every utterance, Klimas did say to him that contaminants do not produce antibodies. Sorry you think repeating rumors is "ugly" gossip. Hope you think the effort to "take out" WPI and intimidate other scientists is ugly, too. I'm not saying Klimas is a part of that, but if it's true that she's voting against WPI proposals, I'd like to know why.

    Klimas has been working on CFS for a long time, so I could understand if she thought she "deserved" the WPI position. I have a lot of respect for her history, but she's also part of the establishment. I suspect Annette Whittemore, CEO of WPI, had her reasons for choosing Mikovits. Whittemore has described Mikovits as a racehorse among plowhorses. If your research is about the patients, your daughter for instance, then a racehorse is to be preferred. If you have a sort of Tuskegee Experiment attitude, where patients are just research subjects, then I suppose plowhorses will do, as long as they can write a successful grant proposal.

    What's really disgusting is that scientists of the caliber of Alter, Lo, the Ruscetti's, Mikovits and Lombardi are being subjected to this kind of dastardly treatment. The hypocrisy of crying out for "pure" science while undermining the purest science we've had in decades is really ugly.

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  47. Thank you for this! I am ready to rumble after reading your post!

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  48. Cort your defense of Coffin is touching. Your defense of the ME/CFS community is anything but. Hilary Johnson refers to you as "The Plagiarist Cort Johnson". Not without good reason. Why don't you and your "tired all the time" buddies get lost, and leave those of us with genuine neuro-endocrine disease in peace?

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  49. “When a true genius appears in this world, you may know him by this sign - that all of the dunces are in confederacy against him” - Jonathan Swift

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  50. I do not ascribe to the negative vibes expressed towards Cort Johnson and the Phoenix Rising site. Many of us would not be in the positions that we are in if it were not for Cort's daily, elevated efforts on behalf of all those affected by this strange and nasty illness. Every single day I am appreciative of what he brings forward concerning the broadest considerations of this illness. Any differences that I might have with him will be resolved by nudging him along with my thoughts and ideas (as in this post), and, incidentally, it works equally the other way. That is how differences among like-minded people are resolved. As far as I am concerned Cort Johnson gets a "free pass" far into the future for what he has done.

    Regards,
    Chris

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  51. Sorry Chris, I'm not sure exactly what Cort Johnson has done for me exactly? I am appreciative of your blog however, and on that basis will stop discussing Mr Johnson. We'll have to disagree on that one.

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  52. Erik Johnson Tahoe Mystery Malady SurvivorDecember 22, 2010 at 12:30 PM

    Mirrow, Dr Shoemaker likes to tell my story about "Sick Thermal Syndrome".
    In 1984 I was Hang Gliding near Mt Hull in northern California, and in search of strong thermals, flew over an area that had been deforested by wildfire.
    I found my monster thermal, a real boomer, but almost immediately was struck by a horrific sense of toxic poisoning.
    Immediately tried to get away, but I was so sick that I could hardly keep my eyes open. Laid my head on the control bar and made for the landing area, seven miles away, afraid I was going to pass out. Kept opening my eyes with a start as the glider (which are deliberately built to be unstable for handling purposes) would begin to fall off on a wing in the prelude to a side-slipping spiral dive.
    I barely had enough strength to plan my final approach and landing flare when I finally made it to the landing area.
    What had made me so sick... there, of all places, thousands of feet above a burned out forest?
    I asked around and found that this forest fire was too remote to be fought with ground equipment, and had been almost solely contained by using airborne drops of flame-retardant.

    I'm just trying to find out what the heck happened to us.

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  53. Erik Johnson Truckee Crud SurvivorDecember 22, 2010 at 1:13 PM

    (Too damned many of us Johnson's. It's hard to keep all the "Johnsons" straight without a score-card)
    (And Yes, "The Truckee Crud" was the very first name for the weird flu-like illness that hit North Lake Tahoe in the Fall of 1984)

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  54. Sorry to take up so much space, but I oughtta at least make it to the punch line.
    I figured there was no need for me to have to "wonder" about the possibility that I was reacting to that stuff, since it is so easy to check for myself.
    I went out to the air-tanker base at Douglas Cty airport and wandered around the fire-retardant fueling platform where the stuff has spilled all over the tarmac.
    Didn't feel a thing. No problem at all.
    But when I wandered past a swampy drainage ditch... POW! There it was. Same "Yechhh".
    So... let's see. The substance itself doesn't bug me, but down in the muck from that ditch... it does?
    Sure looks to me like some microbial presence is processing the chemicals into powerful neurotoxins that are slamming me.
    Looks like mold. Think I'll stay away from it.

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  55. Cort is very closely allied with the CFIDS Association of America (CAA) which has done absolutely nothing to help us, and he and the CAA are passive-aggressive toward the WPI and the XMRV theory. He is pro-contamination and one of the administrators of his forum, Kurt, has been one of the people spreading rumors around that the WPI's study was contamined. Cort and his minions also say offensive things about Dr. Mikovits, including one of his moderators, Martlet, calling Dr. Mikovits a "loud mouthed rabble rouser". When users take exception to such malicious aspersions, they get permanently banned from Cort's forum.

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  56. I forgot to mention how the staff members of the Phoenix Rising forums very recently stole someone's YouTube video and entered it into a contest to raise money for themselves (Cort and PR) without permission. In retrospect it shouldn't have been surprising considering the long posts on OslersWeb.com written about a year ago where Hillary condemns Cort for being a plagiarist.

    Patient Advocate, I appreciate your blog and your opinions very much. They are a wonderful resource. But certainly there must be a good reason why so many people including Hillary Johnson have strong negative opinions of Cort and his Phoenix Rising ("PR").

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  57. Erik Johnson. Participant: Holmes et al CFS definition study groupDecember 23, 2010 at 11:34 AM

    With so much disagreement about What CFS is, either through honest ignorance or deliberate design, it seemed to me that the best way to "get back to the basics" and unveil vested interests who want to pursue some alternate "CFS" paradigm is to ask this simple question:

    "Are you willing to agree that CFS is the illness AND the evidence that the syndrome was originally based on?"

    It's rather odd how many "CFS organizations" and "CFS advocates" will do almost anything to avoid saying "Yes".

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  58. This comment has been removed by the author.

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  59. Saying yes ... it's harder to say no. Once an idea sticks to our brains is difficult to get it out ,..., perhaps even more than a retrovirus.

    Skepticism is one of the most important pillars on which sits the Western civilization. It is too early to give it up. So we have to ask ourselves the same questions a thousand and a million times, until you reach a provisional solution for a specific time-space location (where we are at that time.)

    An inert matrerial steel has a yield strength, where after it passed, it can not recover its original form and is dangerously close to the tensile strength.

    This phenomenon not only happens to steel happens to people, friendships, the decisions, the peoples, countries, entire continents .... But we realize that, unlike steel, can once again restore balance and avoid conflict. Centuries will pass until humanity, if it survives as such, come to anticipate and control this phenomenon, both individually and collectively.


    It is a tragic evidence that pollution by product is incompatible with real life, such as viruses and bacteria take advantage of the weakness of our immune systems by such devastating circumstances, quite apart from seemingly random events that draw Nuesto way as individuals.

    There's something I'm quite sure, as I outlined at the beginning, a building can not be constructed on the roof, we must deepen for a variety of methods to reach bedrock where lay our knowledge. When will we know that we have reached that base?. When we are convinced that we have employed the largest number of variables to consider in our insistent questions to find an answer.

    That this interest to economic power groups?. Go dumb question. Of course not.

    But at what would ,..., beautiful than the design of a new paradigm for human behavior came from the weakest of the weak?.

    This has already happened.

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  60. CFS Since 1998: Everything is black and white with you isn't it?

    I wish we could all be as perfect as you are.

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  61. It's funny, sick the same year that you. I have found that patients who write some blogs have a margin of five years ago when we had contracted the disease.

    Do not quite understand your question. "black or white?, good or bad?. It is possible that by not writing in their language and use the Google translator with a tinge my words that I did not want to use.

    Perfection?. It's just heal everyone. My intention is only to cover more points of view, the shades of gray for example. I think that benefits us because it gives us more possibilities and also because in this case we appeal to our personal memories to link facts and record deductions. Deductions which can then be shared and tested. We can participate in some form in our own healing.

    You may confuse you my penchant for utopia. Want a better future would come into our plans as a species, do not you think?.

    I think if we look at the sky, and inside us challenging ourselves, rather than stumble to the ground the same, but it would be to embrace. But that's just a personal opinion.

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  62. Erik Johnson "Pushy Patient who "Influenced" his "suggestible" Incline Village Doctor.December 25, 2010 at 10:40 AM

    In terms of "black and white"... I remember people becoming VERY frustrated with me and saying "The trouble with YOU is that you never compromise. You never give an inch. Everything has to be YOUR way. Can't you see that if you were to just be more reasonable, it would be easier to reach a middle ground?"

    (Huh? As if the path to truth is halfway between two completely opposing viewpoints)

    And I replied, "Oh SURE... let it never be said that I was unwilling to compromise. Now.. YOU say that my illness is "Impossible" and I say it is very REAL. So I'll tell you what. If YOU agree that my illness is 50% real, then I'll agree that it is 50% impossible... how is that?"

    For some strange reason... it was THEY who didn't want to compromise. I guess that "black and white" argument only serves when it works to THEIR advantage.

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  63. I think the black and white comment was addressed to "CFS Since 1998", not to mirrow or Erik.

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  64. If it can infect a monkey with XMRV,..., then can infect Wessely.

    Burn incense at the altars of Ethics, Democracy and Justice, as we believe it should be in the XXI century.

    But there is a debate in our society that is losing so procupante force: one or more entities that play deliberately and for profit, with the suffering of hundreds of thousands of lives, and with full knowledge of the facts of the effects on those lives will have their decisions,..., can be considered human beings?, or are they viruses?, despicable bacteria which compromise the continuity of our species?.

    We need a new "independent laboratory, and another person as Judi Mikovits to detect, isolate, study and find an effective method to remove or put in their place these pathogens malignant.

    I hope someday justice agencies to become those references.

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  65. Re: CFS Since 1998: Everything is black and white with you isn't it? I wish we could all be as perfect as you are.

    Excuse me? What are you talking about?

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  66. Erik Johnson Hang IVDecember 26, 2010 at 10:43 AM

    I have no idea who that "B or W" comment was directed at or what was meant by it.

    I was just trying to make the point that this was a very common way that people use to introduce "an element of doubt", regardless of whether there IS an answer that is could potentially be considered...
    "Yes or No"
    "Black or white"
    "Right or wrong"

    The way I see it, the attempt to say that there IS no "black or white"... that CFS came into existence for no particular reason, and was not based on any verifiable evidence is like saying, "The reason the Wright brothers Flyer FLEW is because it didn't crash".
    True enough... as far as it goes, but it doesn't go nearly far enough.

    We know EXACTLY what the Wrights did differently to make their attempt successful.
    Just as we know EXACTLY why the CDC had no choice but to defer to the evidence that a new dynamic was afoot.... that the very LEAST action demanded by science was that it be given some kind of description and a name.

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  67. I'll tell you WHY I have a rather negative opinion of Cort Johnson.

    He knows the direct reasons "CFS" was coined, and has chosen to put an artificial separation between the evidence which led to the creation of the CFS "syndrome", and the publically portrayed "CFS-entity", as if "cause and effect" can be disconnected from each other.

    Cort has been fully informed that "CFS" didn't just happen to come along by mere chance, soon after Kaplan and Holmes came to Incline Village, and that the one event directly led to the other.

    I believe that inserting this "gap" in the history of CFS as highly counterproductive and antithetical to science.

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