By David Tuller, DrPH
Earlier today, I e-mailed the following letter to Sue Paterson, University of Bristol’s Director of Legal Services, to clarify whether or not I had been sent a cease and desist letter (to cease and desist what, exactly?). Professor Esther Crawley made this claim at her public talk last Friday. I have never received any such letter. I cc’d the office of the university’s vice-chancellor, Professor Hugh Brady.
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Dear Ms. Paterson—
I attended Professor Esther Crawley’s interesting talk at the University of Exeter on Friday, November 17th. During the question period, I introduced myself and politely asked her why she had accused me of libel and then failed to respond to my e-mail requests that she document this serious allegation. I was immediately asked to leave the room, which I did promptly and without fuss.
Before I left, however, Professor Crawley told me this: “You have been so unbelievably defamatory and unprofessional that I had to get my university to send you a cease and desist letter.“ As with her false charge of libel, she provided no documentation or evidence that anything I wrote was inaccurate or in error—which is of course necessary to sustain an accusation of defamation. (In contrast, calling me “unprofessional” is obviously well within Professor Crawley’s rights, even if I disagree.)
More significantly, her statement that Bristol had sent me a cease and desist letter was certainly news to me. I have received no such letter from Bristol, either by e-mail or by post. In our previous e-mail exchange involving my complaint to Bristol about Professor Crawley’s public accusation of “libellous” blogging, you made no reference to a cease and desist letter. Nor did you mention having sent such a letter in our more recent e-mail exchange involving my freedom of information request related to Professor Crawley’s ethically challenged school absence study.
I am writing now because it is obviously important to clarify this matter and set the public record straight as soon as possible. Did Bristol send me a cease and desist letter, or not? If Bristol sent me a letter that I did not receive, please let me know exactly when it was sent, where it was sent, and the name of the person who signed for it upon receipt, if anyone did. And please e-mail a copy to me immediately, so I understand what it is that Bristol expects me to cease and desist from. If Bristol did not send me a cease and desist letter, I suggest you inform Professor Crawley of that fact.
In our brief exchange, Professor Crawley also mentioned the notion of consulting with “the police” in relation to my activities. The clear implication to those attending the event was that I have engaged in behavior that poses some sort of danger or threat to Professor Crawley. Any objective observer of the situation would recognize that this implication is not only utterly preposterous but, like her unwarranted libel and defamation accusations, potentially harmful to my professional reputation. Last time I checked, writing vigorous commentary, seeking explanations for unsupported libel charges, and appearing at a public lecture to ask a polite but tough question are not criminal activities in the U.K.—even if Professor Crawley might wish that they were.
As I suggested in a previous e-mail to you, someone from Bristol’s legal department should sit down with Professor Crawley and explain very, very clearly that accusing people–and in this case me–of being “libellous” and “defamatory” without providing an iota of evidence of error or inaccuracy is not acceptable. She has now done this in public on at least three separate occasions. She is certainly skating on thin legal ice.
I have repeatedly invited Professor Crawley to send me her full response to my criticisms, promising to post it on Virology Blog at whatever length she chooses. I have also repeatedly offered to correct any mistakes or errors that she can document. It is obviously her decision whether or not to take me up on this, but her refusal to do so suggests that she prefers to insult critics rather than engage in robust debate about the self-evident and glaring flaws in her work.
I have stated before that I have no plans to sue Professor Crawley. But I also have no plans to cease and desist from analyzing and commenting on her research and her public presentations as I see fit. I have every right, as a journalist and public health academic, to make my case as forcefully as I choose. Professor Crawley obviously has every right to find my approach unpleasant, distasteful and offensive. But she apparently has serious difficulty distinguishing between opinions she dislikes and statements that are libelous and defamatory. I trust Bristol’s legal department is not operating under similar misconceptions or delusions.
In summary, if Bristol has previously sent me a cease and desist letter, please forward me a copy immediately. If not, I would certainly like an explanation as to why Professor Crawley would make such a false statement at a public event.
Best–David
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Comments
21 responses to “Hey Bristol, Where Is My Cease and Desist Letter?”
lock up evil and throw away the key
To whom it may concern.
I shared my visceral reaction to the original posting. I am grateful to everyone who replied and to Drs Tuller and Racaniello for allowing me to express myself. In place of further interactions from me I’d like to share with you one final, considered, response to the matter.
The fierce conflict over the management of Myalgic Encephalomyelitis, is nothing more than a reflection of the conflict raging at the heart of the condition.
Exercise hurts people with m.e
Exercise helps people with m.e
Resting helps people with m.e
Resting hurts people with m.e
Having truly listened to the likes of Jane Colby, Nigel Speight, Peter White, and Simon Wessely, I can give strong arguments that each of the four contradictory ideas above are absolutely correct. In the absence of a cure, were I to run my adult years again, I would seek to enlist the help of all of the individuals above in an attempt to better manage my existence. Indeed, every person with M.E ends up having to plot such an impossible and dangerous course between the whirlpools at the heart of their illness. That so many succeed should be an inspiration to us all.
The primary symptom of M.E is illness following exertion and one’s body quickly teaches the necessity of rest (anti-exercise, even). Yet each day spent resting is a day lost to the condition. After years of challenging the medical idea of deconditioning (pre- as opposed to post exertional malaise), I do have to concede that everything I have ever achieved in my life has been the result of denying my primary symptom. Now, you could very well say that this is an irrational response to a disease that I know will surely reassert itself. But I would look at the fruits of my irrationality: my family, my friends and my work and I would say, so be it.
There is a time to every purpose. The time to rend is over.
James David Chapman.
@batteredoldbook
Young people with ME and their families live in fear of being seized by the state and removed to a locked ward, for the “crime” of not recovering, thus proving that the Wessely School’s claims are wrong.
If one’s moral compass points in that direction, I suggest it needs to be replaced, not adjusted with more lies and obfuscation.
This is not a “Can’t we all just get along?” moment. People’s lives are being destroyed while Wessely, Crawley, and their associates collect awards, accolades, and a nice salary. It’s past time to get off the fence.
James, this is a poetical way of obfuscating the real issue. At the heart of the conflict is an illness model without theoretical foundation that disagrees with empirical data, and inadequate methods to test the model. Modern empirical science is based on the idea of falsifiability. Ideas, theories, and models must be put to the test, and predictions must agree with observed data. The fear avoidance and the deconditioning theories for ME/CFS were never really put to the test. PACE and other CBT/GET studies were designed in a way that never could fail. It is well known that systematic bias affects subjective outcomes. If improvement in subjective outcomes are accepted in biopsychosocial studies, why not in other fields as well? Crystal healing, homeopathy, and primal therapy?
Opponents of the fear avoidance and deconditioning theories don’t say that you should completely stop exercising. They say that you should adjust your activity level so that you don’t trigger post-exertional malaise. They also say that activity doesn’t reverse the underlying pathophysiological processes. I’m afraid that science isn’t like politics, where you often try to work out a compromise between different opinions. The objective of science is to find the model that correctly describes the real world and to reject all other models.
James–first, no need to thank me for allowing you to post. I have no interests in censoring anyone’s views, even if I disagree. I will remind you that you were the one who blocked me on twitter, I guess because you were angry at me. I never blocked you. The comment that misidentified you is the first time anyone has asked me to address something written here, and the request was appropriate because the post was inaccurate.
Being able to have a calm conversation with Wessely or White or Crawley is certainly possible, I’m sure. Wessely is routinely described as “affable.” But being “affable” is no excuse for promoting science so riddled with awful flaws, like the PACE trial, Oxford studies, and Crawley’s work. You say you have raised the treatment of children with Sir Simon. Given that that conversation resulted in absolutely no apparent change in the effort to force parents to have their kids exercised even though it will make them worse, it might have been a pleasant experience for you but clearly didn’t accomplish much in effecting change. I don’t think the parents who have faced this nightmare since your pleasant conversation with Sir Simon have found much benefit from that event. It is unrealistic for you to advocate that patients engage in calm, pleasant discussions with people like Wessely, the PACE investigators, and Professor Crawley, given that all these individuals have proven time and again that they are incapable of responding adequately or with non-absurd claims to very legitimate, well-argued and cogent criticisms made in medical journals and other appropriate venues. Instead, they scream libel, harassment and vexatiousness when it is pointed out that every response they make is non-responsive to the concerns raised.
I will leave you with this quote from your smart post from a couple of years ago: “Through extreme behavioral bias I believe British Medicine is rapidly burning through its most precious resource of all: Patient trust.” This salient point is even more true now, since everyone else in the world apart from the PACE et al cabal can see what patients have known for years–these trials are bogus, and the findings completely unreliable. British Medicine has fully burned through patient trust, and has no right to expect that trust to return until people like Wessely are willing to acknowledge the egregious flaws of their research rather than providing sham “answers.” If someone finds GET or CBT helpful, that’s great, and if you choose to over-exert yourself and feel okay about that, that’s your decision. But the fact is there is NO evidence to support recommendations for these treatments, and that’s the argument I’ve been making passionately for two years. I gave the PACE authors multiple chances to respond before I posted anything about their work in my long investigation on Virology Blog. Crawley has had multiple opportunities as well to respond in this space–I have also offered to correct any mistakes that she can document. Her response is to continue to fling absurd accusations of libel and to invoke calling the police, as if I pose a threat to her personally. This is offensive and preposterous. It also demonstrate that she has no real answers to the criticisms, since she refuses to rebut them. I have done nothing wrong here. To equate my work with harassment and abuse is totally off-base.
Thank you for asking. I will do my best to answer.
There are 101 answers to your question regarding ‘ready to go’, it’s hard to know where to go next, we seem to climb up a vertical wall, to find another face sticking in the way to bang our heads upon. When Sophia Mirza was forcibly taken from her home and later died. Her autopsy report should have silenced the medical profession into shame, she taped her removal, what happened to those people? The voice of the patients and their families should have been heard then, you can read all about this here http://www.sophiaandme.org.uk/. That was in 2005. There is a further 101 things I could say about that, but for brevity I will leave that for another time.
Have we gathered together; well most of the mothers are housebound unable to leave their young and very sick children, and therefore are isolated. We fight together for rights that should be just deployed without comment. Laws and safeguards are all there, but you must know about them, and then it is still incredibly difficult to use them. When we manage to get some form of solid foothold, it gets knocked from us, it is relentless. It is hard to trust, as we find actions speak louder than the words spoken to us ever do, not that we get a two-way conversation going with any of those who say they are there for us. Are we ‘ready to go’ in what direction, as there are so many angles to fight. It’s like watching a free climber attempt the Dawn wall, enough of us are prepared to climb, but which perspective should we take, and none of the climb is safe and many loose the will, and see no point.
Do parents have enough energy to keep climbing? You must first understand what energy, time and mental stamina it takes to have a child who is chronically ill. Now with us, we not only have a chronically ill child, but one that has been undiagnosed with the many comorbid conditions, some of which can be life threatening like – musculoskeletal problems, Ehlers-Danlos Syndrome, spontaneous arterial rupture, post orthostatic tachycardia, Lymes disease, kidney problems, urinary sepsis, tuboovarian abscess, many heart problems, Thyroid, Coeliac, Ulcerative Colitis, diabetes, cancer and tumours. None of these conditions are looked for, but within the community of parents that have children with ME, they are known problems. It is exhausting on all levels. Many deaths not reported as ME related, and hidden. When you are fighting on all fronts, it is hard to climb, mostly you hang on in desperation. Lots of our children are rushed to hospital with scenarios that doctors are not prepared for, but parents band together in support hoping anything they mention will help. Most doctors who knew how to treat ME have left the NHS. Their skill set is lost. So no we do not fear each other, we are guarded for good reason.
We are left caring and not being involved with the planning of that care. It is the biggest mistake. Mothers believe me, hold a lot of information about ME, do they know that? Yes, they do. Our children’s medical history, the family history, our experiences of how this condition called ME takes hold, would be a game changer. We are never asked for our experience, history or views, and when we approach with evidence we are not listened to, it is a BIG MISTAKE!!! BIG HUGE MISTAKE!!!
Then there is life, it takes time and energy from you. My husband now works double the hours, as I lost my job to care for our child. It would also seem I have lost my worth in society. I have lost myself because I am no longer free, to be myself. How can I explain how it is to have the simple pleasure of taking a dog for a walk ripped away from you? How each day I miss the freedom of walking and breathing in the earth, while the bids follow me in the hedgerows singing. The grief I feel as I walk or play football in the garden with my dogs, when all I see my little octomonkey on speed, as a shadow by my side. I sometimes look up to his room where his life has evolved for last four years. It pains me so to look at it from the outside, when once the outside was his joy. That boy has not changed, his body has. I see through that window his brave face smiling down at me, and my heart swells with pride at his tenacity to live life to the full. My son has never been told he is brave or that he is an inspiration. My son knows he has little to offer his friends and family. So, his ability to smile through what he has had to endure astounds me. He’s not alone in this, and I am not the only mother that feels that pride.
It is hard to take joy when all his has been denied him, by a body that has no energy or stamina. When an explosion of joy can take days for him to recover from. To take a monument to replenish my soul, with a breath-taking view of clouds passing by, just to breath in life, when I have no shared moments, no differences in life, no other. I will stop there, as you must live it to understand it, the words are just vacant and meaningless really.
The problem is ME leaves you alone in no man’s land, with everyone expecting you to be brave and soldier on, while taking pot shots and baking orders at you, sending you in different directions. However, I have a makeshift helmet made from a colander, old-fashioned dustbin lids as a bullet proof jacket, I have a rusty pair of pliers for the barbed wire, and evidence as a weapon; 25,000 children with ME walking wounded, housebound or bedbound. But who will follow me, are they able and willing, looking at my armour I’m not sure they would be?
But if they did, which battle is the most important to fight? Which rockface will lead us to the summit.
It seems that the Disqus program removes replies to James David Chapman’s post below as spam. I had a reply removed, and I saw that David Tuller’s reply also was removed. I will therefore try to submit my reply as a separate post here, and see if the program lets it remain.
James, that is a poetical way of obfuscating the real issue. At the heart of the conflict is an illness model without theoretical foundation that disagrees with empirical data, and inadequate methods to test the model. Modern empirical science is based on the idea of falsifiability. Ideas, theories, and models must be put to the test, and predictions must agree with observed data. The fear avoidance and the deconditioning theories for ME/CFS were never really put to the test. PACE and other CBT/GET studies were designed in a way that never could fail. It is well known that systematic bias affects subjective outcomes. If improvement in subjective outcomes are accepted in biopsychosocial studies, why not in other fields as well? Crystal healing, homeopathy, and primal therapy?
Opponents of the fear avoidance and deconditioning theories don’t say that you should completely stop exercising. They say that you should adjust your activity level so that you don’t trigger post-exertional malaise. They also say that activity doesn’t reverse the underlying pathophysiological processes. I’m afraid that science isn’t like politics, where you often try to work out a compromise between different opinions. The objective of science is to find the model that correctly describes the real world and to reject all other models.
Anyone can listen. To see and understand the issues, you either need to have the experience of living through them or an intellect to identify them. Your taking such a stance, simply demonstrates a total lack of either but moreover, a total lack of consideration for so many who have been harmed by so few. Your rudeness is offensive and so met with mine.
Hi Tina, It hasn’t shown here (for me, yet) but Diqus has sent me a mail with your reply… and thank you for that. I do understand much of what you say, not from the pov of a parent but as an adult who contracted this disease as a child, albeit at a time (the 1970s) when the threat of the malign BPS model was not hanging like a sword of Damocles over the heads of my parents. Consequently I’m fully au fait with the history of this disease, including Sophia etc, but of course I don’t possess the perspective that you as a parent have.
My question about being ‘ready to go’ was not intended to be critical..more a case of wondering if collectively the parents of children were ready and happy to use their personal testimonies when the time is ‘right’ however that is defined. And the way things are changing the time could be ‘right’ almost at a moments notice. Thus I’m not suggesting that parents should have their own ‘game plan’ but only wondering if there is a groundswell of a collective parental voice which , in unison, might turn out to be very potent should things change as a result, for example, of the work David Tuller is doing here. As an example, if a light is presently brought to shine on Esther Crawley outwith the ME community and a wider audience becomes interested, then the personal stories behind her methods might make useful ‘testimony’ … either literally in a court of law (if ever that heady day arrived… we can but dream) or more likely in the court of media attention. I’m quite sure most/ many parents would neither have the energy, nor indeed the desire to be de-annonymised, but the weight of those very personal testimonies could make for a very convincing narrative.
You, I’m sure, are far more aware of the numbers of children TYMES and Dr Speight have had to support when the processes of the BPS school have been used against innocent children and families… but that in itself is a huge human-interest database of material ready for when the time is ripe (and providing parents wish, or at least *some* parents wish) to communicate what has been going on under cover of Family Courts etc.
In the post that has not yet shown up you said “We are left caring and not being involved with the planning of that care. It is the biggest mistake. Mothers believe me, hold a lot of information about ME, do they know that? Yes, they do. Our children’s medical history, the family history, our experiences of how this condition called ME takes hold, would be a game changer. We are never asked for our experience, history or views, and when we approach with evidence we are not listened to, it is a BIG MISTAKE!!! BIG HUGE MISTAKE!!!”
I think in that paragraph alone you illustrate passionately that you *are* ready ( but only if you wish and, of course, not under duress ) to illustrate what you have been through as a result of a disease which is no one’s fault, but which is being deemed as being yours or your child’s fault. Testimonies such as you have made in simple posts to this blog are incredibly powerful and stand in their own right. So I imagine that you and others like you are ‘ready to go’ if you wanted to add to the dissemination of what has been going on under the spurious disguise of ‘care’. I suppose I was really asking ‘is there the will to do this?’ Or are parents (perfectly understandably) too battle weary to contemplate anything of this sort?
[Response to Dr Tuller’s reply to my message “To whom it may concern.”]
David–My patient trust tweet was biased. As such, it was not smart enough.
Best wishes. James/. @batteredoldbook
If you ever change your mind David, we can meet for an ice-cream or a hot chocolate (depending on the season) anytime. Best wishes. James/. fb@jchap.org
I think the paradox at the heart of m.e and its management was best expressed by this amazing comment at an Unrest screening:
“When I obey my body, I feel like I am betraying my dreams and when I follow my dreams, I betray my body.”
James/.
@batteredoldbook
A complete and unbiased model of m.e would validate both the benefits and the harms of exercise. Just as a complete and unbiased model of our universe would necessarily validate the scientific method’s antithesis. Best wishes.
A model doesn’t have to be complete, but may be simplified and only cover part of the phenomenon under study. However, the predictions of any model must agree with observations. The Oxford illness model says that ME/CFS is reversible by modulating the patient’s illness perception with cognitive behavioral therapy. No objective improvement has been demonstrated in trials. This seems to suggest that the idea that ME/CFS can be reversed by CBT is not a very good idea. It definitely shows that the model is useless for predicting the outcome of behavioral interventions.
The Oxford deconditioning model suggests that a significant part of the symptoms in ME/CFS are caused by lack of fitness, and that patients can recover by graded exercise. Again, no objective improvement has been demonstrated in trials. Actometer data suggest that patients in general are not capable of following a graded exercise program, and surveys suggest that many patients deteriorate if they do follow a program. This model seems to be a poor guideline for how to balance exercise and rest in ME/CFS.
I get the impression you would have appreciated my 5 word pace refutation. 🙂 Am sorry not to be able to discuss the issue further. Best wishes, James/.
That’s OK, every discussion must have an end. Best wishes to you too, James!
Hi Jan, I’m not a lawyer so I don’t know if it’s illegal or not. There have been definite Illegal activities in the USA like lying to Congress and Misappropriation of funds (CDC).
While I don’t believe the Constitution has protections for disabled or chronically ill people it’s important to remember it didn’t have protections for black people till nearly 100 years after the fact. And it hasn’t even been a century that women have had the right to vote.
It’s easy for anyone to see how these abuses of power are against the higher law though, if not the “letter” of the law.
Unconstitutional acts are always illegal – all human beings are protected under the Constitution. Black people and women – all people – have always been protected under the Constitution. Until we as a people acknowledge this, and demand compliance, untold among us will die, including the babies in the womb we routinely murder – inalienable rights are just that. In the end, only God will judge compliance standards.
Whilst I have some sympathy with his predicament it is very disappointing that one individual has continuously conflated his personal issues with the important and major issues being discussed here and filled these articles with his repeated numerous personal grievance posts which is not appropriate and irrelevant and lessen any sympathy and agreement people may have of his original position.
After reflection; I withdraw my offer David.