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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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?
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...
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.It depends upon whether one wants to view the the system as being uniquely prejudiced against biomedical research into ME/CFS...
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?...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.
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'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.
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).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'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.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
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.- 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.
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.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.
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.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.
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 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.
Why would Dr. Kerr sign such an agreement? I can't think of any good reason, any advantage for him.
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.
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.