What's Happened to Dr Jonathan Kerr?

[Enid]

Yes I agree Willow - another member referred to them as "gods of the gaps" If only they could stop their posturing and realise the possible minor supportive role only if asked though GPs do better - so no real role.

 

[WillowJ]

That is mind boggling. It just doesn't make any logical sense. Biomedical research can unveil a possible pharmacological treatment which would make the big Pharmas ecstatic.

Also, I don't think the pharmaceutical industry has anything to do with it at this point. They need good-quality, usually large studies giving them something to work with, in order for them to get involved (if we want them to be able to stay in business, which we do). For that, we need to start with either government or charitable funding for studies identifying pathologies they could target with medications. We have some very interesting biomedical studies but they are mostly very small.

 

[Bob]

Actually, any illness can have a psychological spin on it. From heart disease to cancer, there have been studies linking stress to the cause of these diseases. Why only pick on us?

Yes, I heard on the radio the other day someone say that cancer patients who have a positive attitude have a better quality of life. Coincidently this was on the Today program on BBC Radio 4, the same program that broadcast the Wessely & co interviews. It's strange how they didn't invite Wessely on again to claim that this proves that cancer is a psychiatric illness, isn't it. I wonder if cancer patients would suddenly get angry if Wessely made such claims about them, and then be accused of being extremists.

 

[Snow Leopard]

I don't know why Kerr is no longer at St Georges, but his deaprture need be nothing more than that his team was no longer a big enough 'grant draw' and room was made for researchers who had a guarantee of cash flow - that's the way research 'works' in the UK.

So he was cut because no one is willing to fund much biomedical research into ME/CFS in the UK? It still sounds like a similar argument to me...

 

[In Vitro Infidelium]

So he was cut because no one is willing to fund much biomedical research into ME/CFS in the UK? It still sounds like a similar argument to me...

It depends upon whether one wants to view the the system as being uniquely prejudiced against biomedical research into ME/CFS, or whether one accepts that the system operates in an erratic fashion dictated by fashion, the appeal of novelty, and competing 'free masonaries' of medical specialisms. I'm inclined to accept the latter larger world view mainly because the alternate solopsistic 'small world view' engenders a sense of M.E/CFS 'victimhood' which I don't think exists - the system creates many 'irrationalities' of which lack of consistent funding of biomedical research into ME/CFS is just one. Has the Psychiatry 'free masonary' profitted ? yes certainly but it is only because the system has randomly advantaged that specialism's interests over the last two decades. Does this analysis matter ? I think so because it suggests strategies for countering this particular 'irrationality' that are likely to be more successful than attacking the 'evil empire and its Sith Lords'. There are players within the system who are amenable to arguments of 'unfaireness' or 'imballance' - which is essentially what has happened within the MRC - this may too late for Kerr's team - although even a chunk of MRC funding may not have been enough to keep a research team going for more than a year or two, and St Georges may still have taken a corporate decision to give space to a more 'sexy' specialism with funding guaranteed over a longer time scale, at the cost of losing Kerr's team.

 

[Snow Leopard]

I for one believe that research funding (especially government funding) should be allocated based on actual burden of disease, not the whim of fashion. Call me an idealist if you will...

 

[Mark]

It depends upon whether one wants to view the the system as being uniquely prejudiced against biomedical research into ME/CFS...

I don't think the system is 'uniquely' prejudiced against ME research, and neither, I think, does any campaigner I've encountered - everyone examining the evidence would have no choice but to agree that there are several other conditions that have suffered and do suffer from prejudice against biomedical research, and the degree of prejudice is a sliding scale.

However, it's a simple matter to look up the evidence in terms of US funding, where the league tables of CDC funding are readily available, and there you will find ME/CFS in somewhere around (very roughly from memory) 168th place out of 171 in terms of the CDC's absolute spend. When you then adjust those figures to reflect the number of sufferers, the disproportionality is magnified enormously, and when you also look at the severity and impact of some the other conditions in that class of barely-funded conditions, things look even worse. And then you remember that the vast majority of even that tiny pot is psychological research, and you do start to feel a bit hard-done-by. If you look at the other conditions whose funding is similarily grossly disproportionate to severity and numbers affected, you can't help but notice that they are nearly all conditions affecting women either exclusively or predominantly, and so while it's not an issue of unique prejudice, it's quite clearly one that can fairly be called systematic, with evidence to back up that assertion. Cort has written well on this subject, perhaps others here can look up and post some references, or perhaps you can research it yourself and provide an evidence-based analysis of funding levels.

...or whether one accepts that the system operates in an erratic fashion dictated by fashion, the appeal of novelty, and competing 'free masonaries' of medical specialisms.

Can I take it that when you say 'accepts' you don't mean to say you accept that this situation is acceptable, and that we should just shrug our shoulders and agree that it could not be otherwise, but rather you mean accept that these are the driving factors?

Are there any others? Do financial interests - the lure of lucrative payoffs and the priorities and prejudices of wealthy donors - play any role at all, would you say? And would you agree that in many areas those financial interests will tend to favour treatments that pay off for a lifetime rather than one-off treatments that pay off only once, or even solutions that identify and remove causes of illness? I would personally say that there is a public interest - decreasingly represented by the state's interest - in lowering ongoing cost of health service costs, but that this interest is in today's society increasingly outweighed by the growing power of corporate financial interests and their need to maintain and constantly increase ongoing revenue streams. And the evils of this situation do not require individuals to make unconscionable choices - this reality emerges automatically from spreadsheets comparing business cases and can emerge with little or no human intervention.

I find it all difficult to 'accept'. But in any case, there are surely other factors that can be added to your list, and prejudice and sexism are two that spring to mind.

I'm inclined to accept the latter larger world view mainly because the alternate solopsistic 'small world view' engenders a sense of M.E/CFS 'victimhood' which I don't think exists - the system creates many 'irrationalities' of which lack of consistent funding of biomedical research into ME/CFS is just one.

Here I do agree, in that it makes sense for beleaguered communities to identify suitable fellow-sufferers with whom they can make common cause. In which case, do you have any specific suggestions? But even if you do, abandoning the sense of 'victimhood' is not going to happen just because there are other people who are victims as well. And campaigning on specific issues - around a specific disease - is entirely legitimate, wouldn't you agree? - even if one tries to network in doing so.

Has the Psychiatry 'free masonary' profitted ? yes certainly but it is only because the system has randomly advantaged that specialism's interests over the last two decades.

I disagree with 'randomly'. Clearly there are systematic currents that can be identified, as I've explained above. And evidence is available here also: Prof Wessely himself stated the plan quite clearly in the recently-unlocked portions of the S-Files (i.e. the bits that aren't still subject to the Official Secrets Act): at the beginning of the two decades you mention, he stated clearly in his report that the agenda going forward was not to spend money seeking a cure and treating the illness, but to manage the costs and social impact...weasly though the wording is, the implication is clear and his 'prediction' has come true in exactly the situation you described. (Again, you can look this up or somebody else can dig out the relevant reference or quote and post it).

There is nothing 'random' about this. Prof Wessely's approach is one that saves vast sums of money for insurers, government, and funders of medical research, and once he popped up with his hypothesis that 'ME is merely a belief, a belief that one has ME', and fought the case for himself and his colleagues to proceed on that basis, it has always been an attractive and easy option for those making the decisions about how and where to spend money - it's a cheap option, in every sense of the word. Nothing random about that.

Does this analysis matter ? I think so because it suggests strategies for countering this particular 'irrationality' that are likely to be more successful than attacking the 'evil empire and its Sith Lords'. There are players within the system who are amenable to arguments of 'unfaireness' or 'imballance' - which is essentially what has happened within the MRC

I'm attracted by the strategy you point at because at this point we may agree - pragmatically, achieving change requires a simple, rational, evidence-based case of the unfairness and imbalance to be made to those who are amenable to that argument. That is indeed how we should approach the situation. But the fuller analysis does indeed matter, because in pursuing that strategy, we shouldn't be blind to the nature and strength of the forces that are not interested in being fair or balanced, are only interested in saving money in the short term, and who carry around irrational prejudices about the issues.

As to what has happened within the MRC, your summary seems accurate to me, but it's important to be aware of the deeper factors there too. The historical ME budget from the MRC has been stable at around 850k per annum for the last 10 years at least, 90% of it spent on psychosocial research, as dictated by the psychiatrists who consistently vote down the applications of people like Dr Kerr on the basis that they are using the wrong criteria (i.e. not using the psychiatrists own made-up criteria). This 850k per annum budget was, in the last financial year, reduced to around 100k, and soon after that shocking figure had been announced in response to parliamentary questions, an announcement was made, just in time for the next parliamentary debate on ME, of an exciting new one-off pot of 1.5m for ME research. Astute mathematicians couldn't help but notice that this was not an increase in funding (even though this point was remarked on nowhere but in blogs and forums of course) - the money has merely been held back for a year in order to be able to announce a large-sounding figure.

Slightly more promisingly, there is also a change in the structure for the allocation of that funding, with some good categories highlighted for research proposals - and that change is (I am told) almost entirely down to hard work and lobbying by the MEA, and small shifts in the politics of the MRC committee membership. The MEA appear to have won a small but possibly significant victory there, which should not be disrespected by anyone, and for which we should thank them...but just how significant that change of emphasis will prove, we will have to wait and see. When we see exactly how that 1.5m is going to be divided up, how worthwhile the successful research proposals look, and exactly who gets funded, we will be able to tell whether anything has actually changed here and whether we can expect the MRC-funded research to produce something useful for a change.

After more than two decades of waiting for the UK to begin conducting biomedical research into our illness[es], I don't think anybody will be counting their chickens here, nor whooping with delight. I'll save that for when the research funding is allocated along the rational lines Snow Leopard suggests above, and brought into line with other major diseases, at which point surely some of the new 100m pot will be spent on something worthwhile...

- this may too late for Kerr's team - although even a chunk of MRC funding may not have been enough to keep a research team going for more than a year or two, and St Georges may still have taken a corporate decision to give space to a more 'sexy' specialism with funding guaranteed over a longer time scale, at the cost of losing Kerr's team.

Final note: your hypothesis as to the reasons for Kerr's loss of funding unfortunately does not seem fully explanatory of the available evidence, which says simply that Dr Kerr - perhaps the most well-known and popular UK-based medical researcher of ME over the past several years, and pretty much the only one ever to be funded by the MRC (I think he has been?) will never again be able to conduct research into ME, for reasons which have not been made public, and that he is very unhappy about this situation. If Dr Kerr cannot say why this is, then perhaps we will never know the reason, and perhaps it's best for him that we don't speculate or probe that question, but it's bound to make suspicious people more suspicious, and it's a great shame.

 

[eric_s]

Final note: your hypothesis as to the reasons for Kerr's loss of funding unfortunately does not seem fully explanatory of the available evidence, which says simply that Dr Kerr - perhaps the most well-known and popular UK-based medical researcher of ME over the past several years, and pretty much the only one ever to be funded by the MRC (I think he has been?) will never again be able to conduct research into ME, for reasons which have not been made public, and that he is very unhappy about this situation. If Dr Kerr cannot say why this is, then perhaps we will never know the reason, and perhaps it's best for him that we don't speculate or probe that question, but it's bound to make suspicious people more suspicious, and it's a great shame.

But if he's unhappy about it, why can't he say something about what happened? I don't think in the UK somebody has to fear for his health or his life in such a situation? If people just accept this crap, how is it going to change? Where it's possible to advance things through dialogue and cooperation that's certainly the way to go, but if there are actions that would have to be described as hostile then i don't know if it's helpful if "we" just take blow after blow without even denouncing it.

 

[ukxmrv]

Eric, I think he was worried that no one would give him a job. He had to find something quickly after his contract was not renewed to earn a living. If he sticks his neck out there is no one to protect him from unemployment in the UK. They run a closed shop based on patronship here.

 

[eric_s]

Thanks, Ukxmrv, that sounds plausible. What a mess...

 

[In Vitro Infidelium]

But if he's unhappy about it, why can't he say something about what happened? I don't think in the UK somebody has to fear for his health or his life in such a situation? If people just accept this crap, how is it going to change? Where it's possible to advance things through dialogue and cooperation that's certainly the way to go, but if there are actions that would have to be described as hostile then i don't know if it's helpful if "we" just take blow after blow without even denouncing it.

A simple explantation based on the generalities of institutional practice, would simply be that a no comment clause was written into a severance agreement (not uncommon), that the instituition had rightful claim to all the research - again not uncommon - and that in consequence of the rights to the research, the researcher would have to agree not to pursue comparable work elsewhere. The latter type clause is usually time limited for a number of years and would be be fairly tightly restricted, so a whole illness area wouldn't be usually be covered although that could be the effect depending upon the nature of the research.

A very carefully worded public interest request to St George's and/or the MRC could establish whether that St George's has ownership of research that was paid for by the MRC which has yet to be published, or is even actually publishable and what measures are in place for such material as there is, to be made available in terms that would be expected by the MRC. In any event I still don't see anything exceptional about Kerr's departure or the arrangements that appear to be put in place in relation to it. Of it's all really crap - but that's the nature of academia in 2011.

IVI

 

[Enid]

If all that is so one wonders if Dr Kerr may be one of the applicants to the MRC for the 1.5 mill set aside for "underlying causes" currently being assessed by them. Pick up where he left off so to speak ..... allowed to......in the light of ME history here.

 

[eric_s]

A simple explantation based on the generalities of institutional practice, would simply be that a no comment clause was written into a severance agreement (not uncommon), that the instituition had rightful claim to all the research - again not uncommon - and that in consequence of the rights to the research, the researcher would have to agree not to pursue comparable work elsewhere. The latter type clause is usually time limited for a number of years and would be be fairly tightly restricted, so a whole illness area wouldn't be usually be covered although that could be the effect depending upon the nature of the research.

Why would Dr. Kerr sign such an agreement? I can't think of any good reason, any advantage for him. And if he was forced to sign (threatened with negative consequences of any sort) that would again be a scandal.

 

[WillowJ]

Why would Dr. Kerr sign such an agreement? I can't think of any good reason, any advantage for him. And if he was forced to sign (threatened with negative consequences of any sort) that would again be a scandal.

My understanding is that this is standard practice, probably embedded in hiring contract. Not related to any particular cause of separation.

 

[eric_s]

I don't know much about this, also not about his particular case. But depending on his status there, there probably was no hiring contract, because he was not employed in the private law sense of the word, but had a different kind of status (was elected, like a government official, i don't know the terms in English). Since he worked for the government in a broad sense, a regulation that does not allow him any kind of comment might even breach the constitution, but here too, i don't know anything about UK constitutional law. From what i read here over the last couple of months it did not sound as if he wanted to go. I doubt there could be any regulations that prohibit him saying anything (i understand he might not be allowed to go into the details), so to me it smells like there must be some other reasons.

 

[WillowJ]

I also understood he did not want to stop his work. That was involuntary on his part. I believe there was definitely something wrong here with Dr. Kerr being forced to step down--my best understanding of the issue is that this was because someone did not like his idea to use a specific inclusion criteria such as Fukuda [or, who knows, maybe Canadian] (as opposed to a junk inclusion such as Oxford).

I'm just not convinced the nondisclosure agreement itself, was anything unusual or fishy. That seems standard practice to me. Granted, I'm not from the UK and don't know how things are done there, but I imagine any university anywhere would want to protect whatever work it had ongoing from being carried out anywhere else. A university would still consider its work (done by persons in its employ) its own intellectual property even if it were government funded. I could be wrong, but that one small piece seems normal to me.

 

[ixchelkali]

There doesn't even have to be a non-disclosure agreement. If he left under less than favorable circumstances, even if he was allowed to resign, it could be difficult to get another position. In spite of legal protections, the scientific community (like the academic community) can be a small world; word gets around. If the word is that you're a troublemaker, rightly or wrongly, other instituations might not hire you. If he were to speak out about it, that could make it still harder to find another job. Or even if people whom the powers-that-be perceive to be troublemakers, such as rowdy rabid extremist patients were to speak out on his behalf, they might smell trouble and say "who needs it."

I know nothing about Dr Kerr's personal circumstances, but it's possible he doesn't want to screw up any chance he has of working again. Maybe he has a mortgage or a family to support. Maybe he just wants to keep a low profile and hope for a job.

These things shouldn't happen (and I don't know if they happened in this instance), but they do happen, and not everyone feels they are in a position to become a martyr for the cause. If Dr Kerr says he doesn't want a fuss made, I think we'll have to leave it at that.

But it does kind of make my blood boil, the way that good researchers and clinicians keep getting pressured right out of the field, and then the very people responsible for it say publicly that noisy, angry patients are keeping people from wanting to do research. Did Dante describe any special place in hell for people who pretzel the truth like that?

 

[eric_s]

I also understood he did not want to stop his work. That was involuntary on his part. I believe there was definitely something wrong here with Dr. Kerr being forced to step down--my best understanding of the issue is that this was because someone did not like his idea to use a specific inclusion criteria such as Fukuda [or, who knows, maybe Canadian] (as opposed to a junk inclusion such as Oxford).

I'm just not convinced the nondisclosure agreement itself, was anything unusual or fishy. That seems standard practice to me. Granted, I'm not from the UK and don't know how things are done there, but I imagine any university anywhere would want to protect whatever work it had ongoing from being carried out anywhere else. A university would still consider its work (done by persons in its employ) its own intellectual property even if it were government funded. I could be wrong, but that one small piece seems normal to me.

It also made me remember what we've heard from a US professor, i think his name was Friedberg (or Friedmann or something like that).

I agree with what you say about the intellectual property, but he could still talk about his departure there, wheter he's happy or not, wheter it was about funding, etc. Btw, i don't know if we are having a misunderstanding, it was IVI who mentioned the possibility of a non-disclosure agreement, we don't actually know if there was one and if that's the reason why Dr. Kerr was acting the way he did.

I also would not want Dr. Kerr to become a martyr, Ixchelkali, but what i would hope, is that if there are things going on that are not ok, that if the people who get treated this way, if they are smart and courageous enough, could make these things public, with sufficient evidence, and then it would be the people on the other side who would be in trouble.

 

[In Vitro Infidelium]

Why would Dr. Kerr sign such an agreement? I can't think of any good reason, any advantage for him.

It is common in circumstances where there is dispute between the employer and employee, that a beneficial 'payoff' is agreed in return for non disclosure of the terms of the pay off and the circumstances of the dispute.

I don't know much about this, also not about his particular case. But depending on his status there, there probably was no hiring contract, because he was not employed in the private law sense of the word, but had a different kind of status (was elected, like a government official, i don't know the terms in English). Since he worked for the government in a broad sense, a regulation that does not allow him any kind of comment might even breach the constitution, but here too, i don't know anything about UK constitutional law. From what i read here over the last couple of months it did not sound as if he wanted to go. I doubt there could be any regulations that prohibit him saying anything (i understand he might not be allowed to go into the details), so to me it smells like there must be some other reasons.

The constitutional protections you suggest do not exist, the UK has no written constitution and the only recourse would be to the provisions of the Human Rights Act as written into UK (separately Scotish and English - covers England, Wales & N.I - legal systems) law. The operative Law in this case is UK employment Law (very weak) and where there exists a fair contract (as in contract Law) there is very little opportunity to seek redress under employment Law. This is not an issue that is M.E specific, it is wide ranging and affects even practising doctors and nurses working for the NHS where 'whistleblowers' are routinly silenced; the problem however is not limited to medicine or to the UK , it affects research worldwide although it is a largely invisible problem because the process of silencing is very effective. It is not necessary to invoke conspiracy theories to explain this problem, what underlies most of these occurences of Institutional silencing is a desperation to maximise profit potentials (remember even non profit organisations need to act commercially to survive) and simple cover up of incompentance and illegality. And in many cases the motivation is excessive concern for Instutional image - the management wanting to preserve a picture of happy smiling whitecoated workers busily resolving the worlds ills rather than a reality of daily battles with obstructive admistrators and bullying managers.

IVI

 

[In Vitro Infidelium]

Here I do agree, in that it makes sense for beleaguered communities to identify suitable fellow-sufferers with whom they can make common cause. In which case, do you have any specific suggestions? But even if you do, abandoning the sense of 'victimhood' is not going to happen just because there are other people who are victims as well. And campaigning on specific issues - around a specific disease - is entirely legitimate, wouldn't you agree? - even if one tries to network in doing so.

I will respond to these and your other questions, although it may take a while.

IVI