Swallowing the Poison Pill

Before I get back to more practical aspects of dealing with this disease there is one leftover from the London Conference about which I want to write. It links together with a few other behavioral and professional "strangenesses" and makes me wonder what is going on in the world of CFS research.

The CFS/ME world is a funny place. There was a time, years ago, when Dr. Jonathan Kerr, researcher, was seen as a hero. In 2005 he announced discoveries in genetic and CFS/ME that were seen as revolutionary.

An article in 2005 said this: “British researchers led by Dr Jonathan Kerr "believe they have pinpointed biological markers of chronic fatigue syndrome which could help develop a test and treatment for the condition.”

Around this time, I saw him in a television interview saying that there would be treatment for CFS/ME in a year and a marker in two years, tops. Researchers cannot restrain themselves. They say whatever comes to their heads, make shit up out of whole cloth and people believe them. I watched the interview several times. It was what everyone in the CFS/ME world wanted to hear, yet I remained skeptical. Nevertheless this was real CFS/ME research, and in the UK of all places. I have followed him closely since then, seeing him at conferences in FL, Reno, Baltimore and four times in London. I am a great admirer of Dr. Kerr.

Four years ago this was in a newspaper article: “"We've found that the genes in patients' white blood cells — a key part of the immune system — are switched on and off in an abnormal fashion," Kerr says. The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned. What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research (in CFS/ME) in Britain. The bulk of the funding has gone to the psychological approach.”

While the interferon beta trial was never funded, Kerr did soldier on and another important article was published in 2008: “In the UK, Kerr has demonstrated differential expression in 88 genes [85 up-regulated and 3 down-regulated] indicating hematological disease and function, immunological disease and function, cancer, cell death, and infection, all of which are seen in ME/CFS but not in states of psychiatric fatigue.” [J Infect Dis 2008:197(8): 1171-1184]

In 2008 Kerr gave every indication that he was on the top of his game, moving forward at his own pace and maintaining his independence. He presented at the 2008 London Invest in ME conference and my report is here: “Next up Jonathan Kerr gave his usual fine low-key and precise lecture. He is usually allotted a half-hour, which I suppose is all that he needs to present his important work. He presented his gene expression work in his soft-spoken voice, and there was nothing new here. He and his group have identified seven subtypes, each which has a potential treatment with existing drugs. They are working on a marker (or markers) in order to identify subtypes. No timeline for a marker, or markers, was given. Presumably and eventually, trials with specific existing drugs with subtypes could be done. Kerr did reveal that his application for a trial of Enteracept on a subgroup was turned down by the government - and that this trial is not going to happen. The most poignant moment came at the end of his lecture where he put up a picture of his “group”, the same photo he has shown in the past - six researchers. This group has now dwindled to three - as his funding has been cut, and he gets no funding from the UK government health ministries. Fortunately he is working in collaboration with a group of Americans, who have a deeper appreciation of his work.”

In 2009 and earlier it became apparent that Kerr was working closely with the folks at WPI – or visa versa. Together they were awarded a NIH grant, the first grant that the WPI received. It promised a bright future for genetic research and international cooperation, this latter idea being one of the hallmarks of the WPI. The WPI pledged from the beginning to reach out to researchers worldwide, to share information and to work collaboratively. The relationship with Jonathan Kerr seemed to be a good example of how “collaboration” might work. Small groups of people in different parts of the globe communicating instantly through the internet.

The expectation built throughout 2009 that something big was going to come out of the WPI. Sure enough we found out about XMRV in October. Since then, not much has been heard from Kerr. He has, for whatever reason, become the “forgotten man” of CFS/ME. His name did surface in March of 2010, tacked onto the end of a strangely negative validation study of XMRV. Everyone and his mother was surprised by his name being there - and wondered why and how this could be.

Jonathan Kerr was invited to update his research at the Invest in ME conference in May 2010. He was not in attendance as the conference began and came slinking in halfway through the morning. He gave a very short lecture where he turned away from the microphone towards the slides on the screen and talked in his usual inaudible voice. No one could hear anything that he was saying. A woman patient raised her hand and asked him to speak louder or into the microphone and Richard Simpson hustled up to the lectern to adjust the microphone so that it could be closer to Kerr. Kerr continued to speak turned completely away from the microphone, in a way now that seemed deliberate. He also showed slides that were entirely bleached out and it was totally impossible to see any of the distinctions that he was pointing out. The upshot was that the spectator had no idea what they were observing. At the end of this very short talk he put up a slide of the names of his research help including that it was funded by the ME Trust. Gone was the usual photograph of his young and pleasant looking researchers. What happened to these nice young optimistic researchers? Their picture, though dwindling in number, always gave us hope. What happened?

To this observer it was obvious that Dr. Kerr was embarrassed and did not want to be at this conference. His entire manner and presentation, or lack of presentation, spoke of him just wanting to disappear. He was noticeably not interacting as in the past. He seemed like dead weight, and psychologically half his size.

How did we get to this point? What has happened to our vaunted British colleague? What was with his name being placed on this bogus study, negative for XMRV? Here is my suggestion:

It had been obvious from the beginning that Dr. Kerr’s CFS/ME gene work did not win approval from his colleagues in the UK. His work, though dramatic, was not encouraged - evidenced by his diminished funding and the specific rejection of his Interecept trial (This was shocking.). The writing was on the wall and things obviously got hotter for him when he collaborated with this rogue agency in the US, this WPI place. And then XMRV hit the fan and that was enough for Dr. Kerr’s colleagues. They pulled the plug on him. In various countries, they put polonium 210 in the soup, in the UK they just give the “poison pill” (in a collegial manner).

I imagine that Kerr always expected that something bad was going to happen. So he must not have been surprised when the late night call came, or someone cornered him in the hallway of his tiny research facility - urging him to disassociate himself from “these people”. This friendly fellow or gal, a fully supportive, honest soul, must have said to him, “Jon, pull yourself together, just take this pill, just take this poison pill. Swallow it with a full glass of water.”

Kerr, not having many options, swallowed the pill. (Some people, in their eagerness, take two pills.) The “trusted” fellow, whomever or wherever, informed Kerr, in his smug self-satisfied way, that he could “keep his job” and the ME Trust would keep his pitifully funded efforts going. Otherwise, if he strayed, he would be “chucked”.

What I would like to know is what happens to the joint research project with the WPI now that Kerr has been “disappeared”? From the PR side of things, it looks like someone from the UK is trying to send a message. This tactic is a very effective way to “cut off research dollars”.

(Perhaps there are two sides to this story. I would like to hear it.)

Try to connect the dots here. This isn’t science, this is shit. It is tough to lose a fine CFS/ME researcher like this. There are not very many of them in CFS/ME. Kerr should suck it up and move to the United States.