Wednesday, August 3, 2011

Squeaks and Peeps - and a few sharp bites

A number of weeks ago I read, in quick succession, several articles about Dr. John Coffin. The first told of his and his colleague Brigette Huber's research interest in HERV K18. This is serious research and an "artful collaboration". This article makes abundantly clear where Dr. Coffin's immediate research interests lie. (To some it has long been known that Dr. Coffin has been attached to this HERV K18 retroviral connection, an idea that contends with XMRV.) This is all well and good, serious and legitimate in its own right. The question is, with this background and association, how did Dr. Coffin gain prominence as a"neutral" party in the emergence of the association of XMRV with ME/CFS?

There is another, more predictable, article here, where Dr. Coffin goes knocking about with "the XMRV thing". This has been a habit of his now for over a year.

Because of this conflict, and because of his inept grandstanding, Dr. Coffin has limited credibility. However, he has achieved what he set out to do.

It is worth looking at what we know.

Dr. Coffin was included in early talks about the emergence of XMRV and ME/CFS in the summer of 2009. How he was included in this is anyone's guess. Presumably this "surprise" paper, soon to be published in Science magazine, needed "special handling". Little did the presenters of the paper realize what this "handling" would mean, and what the consequence would be of giving others the heads-up on XMRV.

By the time of the CFSAC meeting of late October 2009, Dr. Coffin, in one way or another, had insinuated himself onto the public stage as a "retroviral expert" - regarding XMRV. Many of us got to see him preening on the videos of this meeting. At that time he presented himself as a dispassionate observer with "a detached interest" in this new retrovirus and its association with ME/CFS.

Seven months later, Brigette Huber gave a presentation of her HERV K18 research at the 2010 InvestinME conference in London. Simultaneously she had also been busy doing a little work on XMRV, looking in the blood of 110 patients of Dr. Susan Levine.

Dr. Huber held in her little valise the results of this study - but she informed participants at the conference that she would not reveal the XMRV study results in her presentation the following day. (The results were suspected to be negative.)

While it was late in the evening in London, it was still cocktail hour in Boston. We can imagine Dr. Coffin, sitting on his porch, listening to his beloved Red Sox, sipping his Courvoisier. We can see him on the line, long distance.

For some reason - your guess is as good as mine - Dr. Huber changed her mind overnight - and at the end of her HERV K18 presentation, clumsily announced the negative results of her XMRV study. This had an unseemly feeling to it. Dr. Peterson leaned towards me and said that he had "never seen anything like this". As she scurried out of town, one imagines that Dr Huber was a little chagrined at having presented this negative information in front of so many sick and disabled patients. At the time it was difficult to determine exactly what the point was. There is no question that it was a sandbag job, and that Huber was shoved into it.

From this moment, it was clear the Dr. Coffin was "on the other side" - pushing against XMRV.

This feeling of Dr. Coffin's "softening" on the XMRV association with ME/CFS was reinforced in September 2010 at the XMRV conference, and again at the Blood Working Group in December 2010. In Gaithersburg, I was able to witness his "academic challenging" - partially supportive, partially equivocal, partially negative, but always shifting positions. The water was being stirred, and it was becoming muddy. Those of us in academia all know that the preferred position is to shoot at others (and how easy it is), and this was on full display on this afternoon.See here.

By early April 2011 at the NIH Dr. Coffin was directly and publicly engaging Dr. Mikovits in scientific needling, still posturing as a "neutral force", directly trying to "deep six" XMRV research. See here and here.

Over these months, there was a series of negative squeaks and peeps coming from others, presumed "academic colleagues" of Dr. Coffin - all aimed to marginalize the association of any viral or retroviral research with ME.

Was Dr. Coffin the best retrovirologist to take a "neutral position"? Who assigned him the position - Fauci? Was he ever "open to suggestion" on XMRV research in the association with ME/CFS - or was his position always academic posturing, a perverted form of "career enhancement"? Why would he bother? What is at stake? Doesn't he have other things to do? It is all a bit thick.

Whatever Dr. Coffin's original intent, or his original involvement, "the goal" has been reached, the one that had been announced in the late fall of 2009 that the WPI was "going to be taken out". XMRV has been "put on hold", and the WPI and their efforts have been stymied. Now we have to wait - and for how long, and for what?

While Dr. Coffin tries to tread a narrow line, knocking about XMRV and at the same time leaving open the possibility of another virus or retrovirus (which will never materialize and which he never will pursue), other folks are less subtle and are more openly aggressive. Coffin is straight out of the American university system. He is careful and covers his bases.

The fellow in the UK (who will remain nameless) plays roughhouse. I opened the paper the other day and read the headlines - and an incomprehensible idea floated into my mind. I said to myself, "Holy smokes, someone finally has pulled the plug on these suckers!" In a few seconds I realized that I had been deked, and the "other guys" had pulled off another tremendously successful stunt. You have to hand it to them, they are clever, resourceful - and dangerous. (This BBC story was a first-rate psychological inversion, where reality is stood on its head.) There is something at stake here. This UK game is not like American academic life. It is real hardball, played with steel bats and no gloves.

And where are our friends Amy Marcus and David Tuller these days? What happened to their story, the one that was going to bring them their journalist reward? Their story lies in a ditch. It was the wrong story - a story without legs. The bottom line is that the storyline has been lost, the tables have been turned. ME has again been smushed in the public arena.

For those of you who think this is a battle over XMRV, I suggest you think again. This is a concerted effort to "deep six" this neurologic illness, and put an end to any sustained serious research into it. The evidence lies there at our feet - there is no data on this illness, and there is no emerging newly fueled research. All outside effort is towards slamming the door.

So the situation is now put in the hands of Daddy government, and we are to wait dutifully for him to come to his conclusion. The problem is that Daddy has not proved himself to have been a good Daddy. On the contrary, he has been abusive, mean, unpredictable, indifferent, inconsistent and venal. Where does that leave us?


  1. Yes, the tactics of the nameless fellow and his adoring crowd in the UK are something else. The language, arena, timing: it's all there hitting hard and leaving you bruised. What is next I wonder. Great analysis PA as usual.

  2. Several months ago I was having a conversation with a resarcher within military circles and he said that this "issue" has been "deep sixed". I was hesitant to speak, then said "sir...I believe it is more than that. It has been deep 24rd". He agreed. This has been going on for over 30 years. 1934 was the possible beginning. The ending is yet to be determined.

    The only way I can see to ascend from the bottom of this deep Ocean, is with high Powered Polital Action.

  3. Deja vu. I remember the fall-out from Dr. Elaine DeFreitas' research.

  4. From Shakespeare's The Merchant of Venice, 1596:

    LAUNCELOT: Nay, indeed, if you had your eyes, you might fail of the knowing me: it is a wise father that knows his own child. Well, old man, I will tell you news of your son: give me your blessing: truth will come to light; murder cannot be hid long; a man's son
    may, but at the length truth will out.

  5. Anyone reading this should be made aware of this new sequence in the GenBank, that is a polytropic xenotropic MLV virus.

    The discovery of this predates the cell line Coffin has hung his entire belief system on.

    They have no more reasons to say it is a contaminant.

  6. Ok - that's news: Are you saying, PA, that XMRV research at WPI has halted completely now?

  7. @Anonymous

    of course it hasn't and neither has it stopped anywhere else, including the MRC.

  8. MRC and XMRV??????

  9. this????

  10. The MRC are about as trustable as a shark babysitting a side of meat, but we can all at least TRY to let them know we are watching.

    If you have not already, please join the 1,000 people who have signed this petition which calls for the MRC to use ALL the £1.5m funding it announced in January for ME/CFS for biomedical reasearch, not psych research:

    There is also a good petition at the Gov't ePetition site, but the site is experiencing some difficulties. Watch out for that petition being promoted - it is worth signing, too.

  11. Hi Barba..yes I was playing Devil's advocate on all my posts! Thoroughly agree with you which is why I questioned the MRC link :) Signed that petition a long time ago...:) (R)

  12. During a break at the NIH workshop, I tried to engage Dr.Coffin in a discussion of the OTHER viruses implicated in research on this disease. I was curious as to what he thought of ciHHV-6 ( chromosomally integrated HHV-6, which can be inherited - the HHV-6 research community seemed split as to whether it was really inheritable). I made the mistake of saying I had active HHV-6A when in relapse. He chuckled indulgently and said I did NOT have HHV-6A - it was some type of echo in my antibodies. I protested that Dr. Ablashi had actually SEEN the little devils because I was in a tidy of his with only five patients. Coffin walked away.

    That's when I realized this guy had clearly been influenced by Straus, who used to say the same thing, and perhaps also Fauci.

    It appeared to completely escape him how insulting his comments were - not only to me, but with regard to Dr. Ablashi.

    Not a good attitude on the part of a supposedly impartial scientist.

  13. Wow, i just looked at the BBC article. Another click i wish i hade never made.

    Sorry for maybe offending UK people, but your country is worse than the Soviet Union. I've never seen such a concerted media campaign before. Are you a democracy? It is so obvious how they spin things around... Oh, those poor reaearchers, with their good health, status, income, career, etc. Being attacked by the evil sick people who have been waiting for help for years, while being denied basically everything.
    How can people not see through this? Those people behind this have no humanity and no morals at all. * them, seriously.

    But what i don't agree with is that they have the power to bury everything. We have to deal with some resistance here, i agree, but the rest of the world is not like the UK. But we need to improve things on our side. We have to do more and do it better. I know that's not easy, i'm not well myself.

    Within a couple of months, results of the Blood Working Group's phase III should be out. If they confirm XMRV there that should change things. Also there should be more positive XMRV papers in the foreseeable future, as far as i know.

  14. I think the question here is: Where are the UK ME/CFS organisations? Only them or a really large mass of people can counter these things. Individual reactions will either be ignored or presented as threats.

    UK organisations must do their job and pwME/CFS must support them. And if they fail, for whatever reason, you would need to found new ones or try to change their leadership. But i don't think we have any chance as individuals, unless you are extremely rich or well connected.

  15. The question then is what are we going to do about it?

  16. There are very good UK advocates working on this. And tbh it isn't the first time this has happened. The UK 'situation' has been on going for a very long time indeed. This is a useful link for people outside the UK to read:

    It would be nice to think the rest of the ME population was as well educated on this as we in the UK tend to be about the US situation. We are fighting a case of deliberate propaganda but it precedes Incline by a good 14 years at least. People aren't doing things to try to ameliorate this in the UK, but attempts to bring matters to the right parties tend to get quashed at an early stage. Invest in ME is working very hard on our behalf for example, but we are being marginalised by Action for ME and their close links to the Wessely School & Government. Many many patients have expressed a wish that AfME be disbanded..indeed a petition for it's removal exists. We could do with more strength from outside the UK to act on this situation. PD White and SW have links to your own CDC..maybe try to investigate that side of things and limit their influence there leading to a pincer movement of disapprobation which might be more effective?

  17. sorry- that should be *are* doing things

  18. Ok I posted a comment there which has not appeared. To paraphrase: the UK situation has preceded Incline by at least 14 yrs and this document will give a better idea about all that:

    This is not new, and the UK is trying to act against it!!!

  19. The UK ePetitions site Barba mentioned is now up and running (sort of), so you can sign here:

    Barriers you need to overcome when signing:

    1. The site is overloaded as it's the first few days of operation

    2. You have to provide your name and home address as well as an email address. Only provide them if you are confident that you don't mind telling the Government you are sitting on the computer. People who have managed to get through the minefield that is the DWP process for claiming benefits might want to think carefully. I used my middle name and my last address.

    3. You have to click on the link in the email before your signature goes live, and there can be a several-hour wait before the email from them arrives in your in-box.

  20. Are you a democracy?

    No country can claim to truly have one as people get in the way.

  21. I'm not trying to be a know it all; but if you think the US is a democracy, you're wearing a serious pair of rose-colored glasses.

    If you don't believe, watch/read every day for a month, and see...heck, it won't take that long unless your glasses are particularly thick. Unlike the media you're presently hooked into, DemocracyNow takes NO corporate donations.

    Warning: It's painful

  22. This is a classic example of the Karpman Triangle (aka Drama Triangle) developed by Stephen Karpman, psychiatrist and teacher of Transactional Analysis. Karpman said there are 3 dysfunctional roles (Persecutor, Rescuer, and Victim) that everyone plays at one time or another in relationships and within themselves. All the roles are shame-based and lead to victimhood.

    As portrayed in the BBC article, the ME patients (the victims) become persecutors as they allegedly threaten the researchers (the rescuers). The researchers become victims due to the threats and then become persecutors when they state they're not going to work on ME anymore. In the end, ME patients wind up as victims again because researchers are dropping their cause and because they're depicted as crazy, thankless people who would prefer to have a virus.

    PR firms are hired all the time to use this technique, among many, to discredit their target.

  23. It sure blew me away to see some people succumb to this bizarre role-reversal tactic and
    re-direct their anger and blame at the "CFS pioneers" for continuing to use the term "CFS".

    As if THEY were the ones who made it up!

    In all the twists and turns of this convoluted labyrinth of CFS, I never thought I'd see anything THAT crazy.

  24. Background on some of the key players in and out of government who've been pushing ME denial in Britain

  25. Now ask yourself: What all is so horrible that those in the US/UK governments are pulling out all the stops to kill off this disease from the public and any funding from any sources? Man-made contagions maybe? I believe researchers will be able to work backwards and find this disease family was man-made and when soon that horrendous information comes out god help those involved in creation, dissemination, cover up and so on. Soon. Let's see the data and info coming out of WPI patients now.

  26. BRITS! Please Help Support People With ME/CFS By Signing A NEW E-Petition For the government to follow Norways example, and start taking the illness seriously.

    Thank you.