Trial By Error: My One-Sided Correspondence with Professor Crawley

By David Tuller, DrPH

Well, last week was certainly exciting! As I wrote on Wednesday, I was planning to post about Professor Esther Crawley’s SMILE trial. However, that plan changed when Sue Paterson, the University of Bristol’s director of legal services, e-mailed me what I guess was supposed to be a scary letter.

The letter pointedly cited the “close and valued collaborative relationship” between Bristol and Berkeley, which is of no concern to me and has zero relevance to the current situation. Then, in referencing “private and confidential communication” at “a senior level,” Ms. Paterson appeared to be making ominous insinuations about potential professional payback for my “actions and behaviour” toward Bristol personnel involved in ME/CFS research. (That would presumably be Professor Crawley.)

After receiving the letter, I decided it would be a good idea to review all my blog posts, as well as the various e-mails I had sent to Professor Crawley seeking her response to my concerns. My blog posts are available for anyone to read; I stand by all of them. As for my e-mails, I thought it would be a useful exercise in transparency and a helpful addition to the discussion to publish my entire correspondence with Professor Crawley so that others can adequately assess my “actions and behaviour.” (“Correspondence” implies an actual exchange, so the word is really a misnomer here. No matter how many times I tried to solicit Professor Crawley’s comments and explanations, she never replied.)

It is true that I have sometimes used sharp, snarky or sarcastic rhetoric to advance my case, in both my posts and my e-mails. I was under the impression that such approaches to argumentation were not yet outlawed in the U.K. If I am wrong, I am sure my good friends at Bristol will let me know. (Perhaps Ms. Paterson and Professor Crawley are unfamiliar with the wide range of verbal strategies available to experienced practitioners of the English language. If so, I suggest they read Jonathan Swift’s A Modest Proposal to acquaint themselves with the great British tradition of satire.)

First, however, let me once again repeat the offers I have made in multiple e-mails and blog posts. Although I have been falsely accused of egregious misconduct, I nonetheless renew my invitation to Professor Crawley to send me her evidence that anything I have written is “libellous”—that is, inaccurate. If she can document mistakes, I am happy to correct them. (In contrast, I will not “correct” my fact-based opinions, no matter how distasteful they are to Professor Crawley.) I also once again urge Professor Crawley to send me her comments about my criticisms, at whatever length, and I will post them on Virology Blog—the same venue where I purportedly libeled her.

I remain perplexed as to why she has consistently refused these offers. The only logical conclusion is that Professor Crawley is incapable of defending her methodological and ethical missteps in a robust debate. I am also at a loss as to why Bristol believes it is acceptable for faculty members to accuse other academics—or anyone–of libel and then refuse to provide any information that would support such a serious allegation.

A person accused of libel–in this instance, me–deserves an opportunity to correct any proven errors, undo any damage as much as possible, and apologize. Professor Crawley and Bristol have denied me that right. Instead, for reasons that escape me, Ms. Paterson appears to believe that sending me a threatening letter might be an effective way to shut me up. If that is indeed what she thinks, she is mistaken. Whatever her motives, her letter is way beyond the pale. I now find myself in the unusual position of having to point out the obvious: This is a very serious scientific and academic dispute, not an episode of The Sopranos.

**********

Now let’s review the record. Unless I’ve overlooked something, I have sent ten e-mails to Professor Crawley. All of them are quoted in full below.

I first critiqued Professor Crawley’s research when I wrote a post about FITNET-NHS on November 22nd of last year. Among other points, I noted that the FITNET-NHS protocol seemed to “disappear” the NICE requirement that a diagnosis of the illness required the presence of post-exertional malaise as a core element of the fatigue itself. After my post appeared, in fact, Professor Crawley revised her protocol to explicitly include this NICE requirement. So perhaps she agreed that the proposal, as written, was inadequate and unclear. I received no credit from Professor Crawley for pointing out this major issue. (FITNET-NHS remains problematic for a multitude of other reasons.)

In any event, on November 23rd, I sent an e-mail to Professor Crawley inviting her to respond to the previous day’s post. (I referred to her at that time as Dr. Crawley. In the U.S., “professor” and “doctor” are titles that can often be used interchangeably, so it is not considered insulting to call someone “doctor” instead of “professor.” As I have since learned, that is not the practice in the U.K.)

Here is what I wrote:

Dear Dr. Crawley–I’m a lecturer in public health and journalism at Berkeley, and the academic coordinator of the university’s joint masters program in public health and journalism.

Since last fall, I’ve written extensively about the PACE trial, mostly for Virology Blog, a science site hosted by my colleague Vincent Racaniello, a microbiologist at Columbia. (I’ve cc’d Dr. Racaniello here.)

Yesterday, Virology Blog posted my critique of FITNET-NHS, along with the recent Pediatrics paper on prevalence of CFS and the Dutch FITNET trial. Here’s a link to my analysis:

Trial By Error, Continued: The New FITNET Trial for Kids

Given that I’ve expressed some serious concerns, it seems fair to offer you a chance to respond. If you wish to, you can send your response to Dr. Racaniello, and he’ll be happy to post it, along with my response to your response.

Best–David T.

It goes without saying that I did not hear back from Professor Crawley.

**********

Over the next couple of weeks, I wrote two more posts that included critical commentary about Professor Crawley’s research and her unwarranted claims. On December 4th, I sent her another e-mail, again inviting her to respond:

Dear Dr. Crawley–Since I wrote you last, Virology Blog has posted two more blogs about your research and the Dutch research. 

I have continued to make serious charges about your work–including questioning why you have not published the data from the 2014 CMRC poster, which appears to provide substantive information about spontaneous “recovery” omitted from your Pediatrics paper, FITNET-NHS protocol, and other work. Why would you decide these data are not relevant to the argument you are making for more CBT and GET?

As usual, I checked my concerns with academic colleagues–biostats and epi folks, in particular. They uniformly agree with me about the poor quality of your research. However, I recognize that you and your colleagues undoubtedly feel differently.

That’s why I am again offering you the chance to respond on Virology Blog. In case you haven’t seen the two additional blogs, here they are:

Trial By Error, Continued: A Follow-Up Post on FITNET-NHS

Trial By Error, Continued: The Dutch Studies (Again!), and an Esther Crawley Bonus

Should you decide you want to respond, simply send your response to Dr. Racaniello. He will then give me a chance to respond, and will post both your response and my response to it.

Please don’t accuse me of being “vexatious” or something similar, as your PACE colleagues have done repeatedly when people have legitimately questioned their methodology and asked very reasonable questions. I am not a vexatious person. I just believe in honest science.

Best—David

Again, I received no response.

**********

In mid-December of last year, I came to the U.K. for a month to continue my investigation. Despite Professor Crawley’s refusal to respond to my earlier e-mails, I was interested in interviewing her in person. I wanted to talk about the reanalyses of the PACE data. These reanalyses definitively demonstrated that PACE was not, in fact, a “great, great” study, as she had claimed in an interview. I also wanted to ask her about the issue of parents being threatened with custody proceedings if they refused to let their sick children be forced to exercise.

On December 19th, I sent Professor Crawley an e-mail with the following subject line: “comment for stories?” Here’s what I wrote:

Dear Dr. Crawley–I’m writing a short piece for Undark, an MIT-based magazine, about the reanalysis of the PACE recovery data that was published last week. The paper, as you likely know, documents how the authors’ decision to weaken all four of the outcome criteria allowed them to maximize their purported “recovery” rates.

The reanalysis, of course, showed that they had null findings per their own original “recovery” definition, which they changed with no approval from the various PACE oversight committees and without the required sensitivity analyses to demonstrate the impact of the dramatic changes.

As you know, I don’t think much of the trial, or any of the other studies focused on CBT and GET, including yours. However, in fairness, it would be good to quote someone–anyone–in defense of the trial. The PACE authors have never been willing to answer any of my questions directly–their answers are evasive and non-responsive to the concerns raised, despite their repeated claims of having answered all in full. Since you apparently continue to believe that PACE is a “great, great trial,” despite all the evidence to the contrary, I thought you might want to defend the 2013 “recovery” paper.

If you send me a quote in defense of the dramatic outcome-switching and the decision to not include sensitivity analyses and why these actions do not disqualify their recovery paper, I will try to make room for it, although no guarantees. Perhaps you can also defend how it’s possible to be “recovered” (or “within normal range”) and on the two primary outcomes at baseline, before any treatment at all. Frankly, I continue to be perplexed at how a “great, great trial” can have outcome measures representing worse health than entry criteria. But maybe that’s just because of my cynical and snarky American attitude. (I do, by the way, apologize for the horrible president-elect my country has now inflicted on you and the rest of the world.)

I’m also working on a piece about families threatened with child custody proceedings because they won’t allow their children to be “exercised” and “CBT’d,” since they know that GET can make their kids much worse. As the UK’s leading pediatric voice on ME/CFS and a proponent of this approach, your name often pops up in my interviews, so of course I’d like to speak with you about this issue. I am currently in the UK until Jan 12th to do my reporting and also avoid for a period my own country’s political disaster, so please advise if there’s a time for us to talk and/or meet.

Of course, I’d be happy to come to Bristol to hear your explanation of why PACE remains a “great, great trial.” I’m also interested in hearing how studies in which the comparison group is “waiting list”–a specialty of your Dutch FITNET colleagues–can be taken as proof of the effectiveness of CBT. And of course, I’m very interested in why you have not published the data included in the poster from the CMRC 2014 gathering, why you believe reports of “chronic fatigue” can lead to a diagnosis of chronic fatigue syndrome, and why you misrepresented the results of the reanalyses in your BBC interview, as I explained in one of the blog posts I sent you.

Thanks much!

Best—David

Once again, no response. (Actually, I received an auto-response indicating that Professor Crawley would be away till January 3rd, 2017. But that doesn’t count.)

**********

Early in 2017, the CMRC’s MEGA project, spearheaded by Professor Crawley, failed in its bid to obtain funding from Wellcome. I planned to write about this, so on April 5th I sent Professor Crawley the following e-mail:

Dear Dr. Crawley–I’m going to include information about Wellcome’s rejection of the MEGA grant application in an upcoming post on Virology Blog. I have a few questions: 

Why do you think they turned down the MEGA proposal? Do you think the reviewers thought it might be replicating what the UK biobank group has been doing for years, without sufficient justification? Or do you think reviewers might have become aware of the international controversy over the indefensible flaws of the PACE trial, raising concerns about continued claims that it is “a great, great trial”? Or do you think there might be another reason?

Let me know if there’s a good time to talk, or feel free to e-mail any responses. And good luck with future grant applications!–

Best—David

I received another auto-response, this one with the following message: “I am away until Thursday the 6th of April and there will therefore be a delay in answering your emails.” The message did not suggest that the delay would be permanent.

**********

After that, I had no further plans to contact Professor Crawley, since it was obviously a waste of my time. Then she decided to slander me in public. I was flabbergasted when I first saw the slide in which she indicated that my post about FITNET-NHS was a “libellous” blog—especially since she had rejected my invitation to respond and outline any issues she had. The slide went public after it was live-tweeted during her talk to a nephrology conference. (Later, it turned out that she had also used the slide during what was likely one of the high points of her career to date–her inaugural lecture at Bristol.)

Before I posted a response to her false claim, I sent an e-mail on April 29th with the following subject line: “your silly accusation that I am writing ‘libellous blogs.’”

Here’s what I wrote:

Dear Dr. Crawley–

I was surprised to find myself accused of writing libelous blogs, and my colleague Dr. Racaniello at Columbia, who hosts Virology Blog, of publishing libelous material. This is the post that appeared in the slide you presented at the renal society conference:

Trial By Error, Continued: The New FITNET Trial for Kids

I am currently writing a Virology Blog post refuting your claim. I am happy to offer you the opportunity to write a statement explaining why that post, or any of my posts about your research, are libelous. I will post it as you send it. I will respond to it, of course, but I won’t cut it or edit it down. If you identify factual inaccuracies, of course I will correct any such errors.

Libel, of course, involves inaccuracies, not opinions you dislike. If something is accurate, it is not libel. There is nothing inaccurate in my description of your Pediatrics paper, your FITNET-NHS protocol, or the Dutch research. The PACE authors made the same claim–that I was purveying “misinformation.” It turned out they just didn’t like my interpretation, as a UC Berkeley public health professional, of the facts I had documented. The same applies here.

I certainly can understand why you hate my conclusions and interpretations and my manner of expressing my opinions. I can also understand that it is upsetting to have many dozens of top scientists and clinicians from Berkeley, Harvard, Columbia, Stanford and elsewhere publicly slam in harsh terms the study you have recently endorsed as “a great, great trial.”

But none of that justifies calling my work “libelous.” –You should be more careful about flinging such serious charges at other scientists and researchers. Is everyone who signed the open letters also libelous?

Please respond by Monday if you would like me to include a comment from you.–

Best—David

**********

That e-mail elicited yet another auto-response, indicating that Professor Crawley would be away until May 2nd. I also learned that Monday, May 1st, was a bank holiday in the U.K. So on April 30th I sent a follow-up, offering to delay posting my blog about her libel accusation in order to give her more time to respond:

Dear Dr. Crawley–Since I wrote my previous e-mail, I have been apprised of the bank holiday in U.K. I’ll plan to post my response to your charge that my blogs are libelous on Wednesday instead of Tuesday, in case you want to send in a statement or explanation for your accusation that Dr. Racaniello and I have libeled you.–

Best—David

No response. (For some reason, I do not seem to have received the auto-response about her short-term absence; if I did, I can’t find it now.)

**********

At that point, I also began sending e-mails to members of the executive committee of the CFS/ME Research Collaborative, asking them to take a position on Professor Crawley’s libel accusation, since she served as deputy chair of the group. Given the lack of response from either Professor Crawley or anyone else on the CMRC executive committee, I decided to write a follow-up post. Before doing so, I wrote to Professor Crawley on May 6th, once again inviting her to explain her position.

Dear Dr. Crawley–

Since I didn’t hear from you about any documented inaccuracies in my blog post about FITNET, or other blog posts, I am interpreting that as your acknowledgement that there were no inaccuracies to correct. As a corollary of that, I am also taking it as your acknowledgement that the charge of libel was false, and that the opinions I have expressed, while unpleasant to you, were fair comment and not libelous.

I have no reason to think that this was the first time you have used that slide in public. I assume it’s just the first time you were live-tweeted, so everyone. But since I have no evidence that you have used it in public previously, I am going to pretend to believe that it is the first time. I do expect it to be the last.

Although making false claims of libel is obviously defamatory and possibly actionable, I have decided not to pursue legal action, as I told the CMRC board. I do think a public apology is in order, given that you have made a false and reckless charge that impugns my professional integrity and reputation.

In addition to the CMRC board, I have written to the British Renal Society, complaining about the decision to provide you with a platform to libel me. I will also be complaining to your university, when I get around to it.

Others have noted that you also apparently lifted a photo of a young woman without her permission, and appear to have advised medical professionals how to use alleged “vexatiousness” as a way to avoid their legal responsibilities to comply with FOI requests. You seem not to have noticed that the most recent decision, last year’s First-Tier Tribunal ruling, dismissed in scathing terms the claim that the request was vexatious.

The “vexatious” meme is very 2015. It worked for your PACE colleagues for a number of years, but it doesn’t work anymore. Now that it’s clear the PACE trial had disastrous results for “improvement” and “recovery” before the investigators engaged in rampant outcome-switching, people see past the charge of “vexatiousness” and know that it’s nonsense–at least, the court did, which is what matters. Invoking the argument just makes you look like you’re fighting a desperate rear-guard action–which I guess you essentially are.

I am writing a follow-up blog post about this incident, and the responsibility for the CMRC to address this whole mess as well. It should be posted early next week. I would still welcome either documented evidence of my libelous statements, or an explanation and apology for your false accusation. As I previously mentioned, I will post whatever you send, without edits or trims.-

Best—David

No response.

**********.

That follow-up blog post bore the following headline: “An Open Letter to the Board of the CFS/ME Research Collaborative.” After I posted it, I sent the link to Professor Crawley on May 8th. Here’s that e-mail:

Dear Dr. Crawley–

Although I’m now aware that you follow Virology Blog, I wanted to make sure you saw this latest post, as a courtesy. I have of course also sent it to your colleagues on the CMRC board:

Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative

Best—David

No response.

**********

I continued my efforts to elicit a comment from the CMRC’s executive committee about Professor Crawley’s libel accusation. Finally, Professor Stephen Holgate, the CMRC chair, issued a full-throated statement of support for Professor Crawley. I wrote a blog post about that, and on May 15th I sent the link to Professor Crawley. Once again, I invited her to point out any errors and offered to post her full response on Virology Blog.

Here’s what I wrote:

Dear Dr. Crawley–

This is my response to Dr. Holgate’s note expressing the “full support” of the board for your role with CMRC. Of course, I find his response inadequate and take it as an endorsement of your accusation of libel.

Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther

Dr. Racaniello and I are still willing to post on Virology Blog your explanation for the accusation, any documentation or evidence you care to provide, or your apology for falsely making such a charge.

It must be upsetting to you that this talk was live-tweeted. I’m curious, of course, how many other times you have used that slide and accused me of libeling you at public events. Can you provide me with a number?

Best–David

No response.

**********

On May 18th, Professor Crawley gave a talk at a conference in Devon whose title jokingly referred to children suffering from “medically unexplained physical, psychological symptoms” as “muppets.” In the U.K., that word is considered a slur that means, according to the BBC, “someone who’s stupid, gullible and incapable of independent thought.” (In the U.S., the term generally refers only to Miss Piggy and her various puppet-friends; it is not considered an insult, as far as I know.)

By this point, I had complained to Ms. Paterson at Bristol University about Professor Crawley’s libel accusation. In my letter, which I posted on Virology Blog, I let Ms. Paterson know that I expected Professor Crawley to retire the offending slide. To reinforce the point that I would be very unhappy to learn that she had repeated her libel accusation in more presentations, I sent Professor Crawley an e-mail on May 19th. The subject line referenced the previous day’s talk at the “muppets” event. I again invited her to back up her libel complaint and provide a statement for posting on Virology Blog:

Dear Dr. Crawley–

I trust that in this new presentation the defamatory slide suggesting that I have written “libelous blogs” was not used, and that is has been retired permanently. — Of course, use of the term “muppets” was probably not the best idea, whoever thought of it.

I am working on a blog post about the responses of Action for ME and ME Research UK to the controversy around CMRC. Do you have any comments you’d like to offer on the situation? I’m still waiting for your explanation of the accusation of libel, documentation of your evidence, or an apology. I assume I will be waiting for a long, long time.

Best—David

That was the last time I e-mailed Professor Crawley. I had done my job in seeking her response. There was no point in further efforts to extract an explanation.

**********

Now let’s take a look at other “actions and behaviour” that involved Professor Crawley, apart from my posts and my e-mails. I can think of two events to which Ms. Paterson might have been alluding.

The first was my talk at the Invest in ME conference on June 1st of this year. The video of that talk is readily available. During the talk, I tore up two PACE papers and one by Professor Crawley. That was her Pediatrics “prevalence” paper, which asserted that around two percent of 16-year-olds in the U.K. suffered from chronic fatigue syndrome. The paper clearly uses “chronic fatigue” as a proxy for “chronic fatigue syndrome,” without legitimate or adequate justification. Although the estimate is wildly inflated, Professor Crawley continues to cite this figure as authoritative.

Tearing up papers written by esteemed researchers might be unorthodox for an academic and offensive to Professor Crawley. But my action was certainly within bounds by recognizable standards of public comment, especially since my poor assessment of her work is backed by leading pediatricians and ME/CFS experts not affiliated with the CBT/GET ideological brigades.

The other “behaviour” to which Ms. Paterson might be referring was my appearance at Professor Crawley’s public talk at the University of Exeter on Nov 17th. Our exchange at the end of her remarks was captured on video. She interrupted me when I tried to ask a question and then attacked my work as “defamatory,” again without documenting any errors or mistakes. She also invoked the notion of consulting “the police,” suggesting to an academic audience that I had engaged in activities that posed a physical threat to her person and safety.

Understandably, I found these remarks to be unfair. However, the video of the exchange is very clear. I asked my question politely. When the moderator requested that I leave the room, I complied without any fuss or protest. I have no idea how Professor Crawey described our exchange to Bristol’s legal department. Ms. Paterson’s thuggish letter about my “actions and behaviour” suggests that the university might try to characterize my demeanor at this lecture—or perhaps even the fact that I showed up in the first place–as belligerent and aggressive. As the video clearly documents, such an interpretation would be at odds with the facts.

Given the length of this post, I will end here. If it seems warranted, I might also soon post my full correspondence with the CMRC about what I consider to be Professor Crawley’s own unacceptable “actions and behaviour.” Like my messages to Professor Crawley, these e-mails effectively demolish any claim that my response to being slandered in public has been inappropriate and beyond the bounds of acceptable discourse, no matter what Professor Crawley and her august institution maintain.

Your honor, the defense rests…at least until the next post.

Comments on this entry are closed.

  • Joan Byrne

    Well done David. It’s really good to see the whole correspondence trail laid out like this. It’s clear that Prof Crawley is of the belief that if you ignore something it will eventually go away. It’s a well used tactic but in this case she hasn’t reckoned with your tenacity and determination to expose the truth of this scandal, the abuse of ME patients and the torture of good science. I’m still quite amazed at the correspondence from Ms. Paterson implying that she ‘understands’ there has been some high level communication with your employers about your behaviour. Again, a well worn tactic that they gambled might put a halt to the gallop of someone with less determination than yourself. I suspect it’s simply spurred you on even more.
    It’s so transparent to anyone reading this saga – if Prof Crawley was able to refute any of your claims she would have done so by now. She simply can’t. Keep up the good work.

  • davetuller

    Thanks, Joan–I’m impressed that you already got through this very long post!

  • Joan Byrne

    My speed reading talents serve me well at times 🙂

  • Valentijn

    I’m starting to suspect that Esther Crawley has not yet discovered the internet. It could explain why she thinks we want or need her to be our voice, and her failure to understand the complaints regarding the methodology of her work. But I’m not sure what Bristol University’s excuse is.

  • Jan Wade

    She “follows” Virology Blog – not a sign of a Luddite.

  • Paul Fox

    Thank you, David, once more, for your tenacity, clarity and refusal to be deflected.

    I was worried when I saw Ms Paterson’s sabre-rattling that for her to write in such terms might suggest that they were getting somewhere with their attempts to undermine you. However, I now see that, in the absence of any satisfactory grounds to defend Prof. Crawley’s false claims against you, Bristol likely thought that they had to find some way, however specious, of making believe that Prof Crawley herself was not engaging in make-believe. Can that really be, when students, patients and the public alike are told that the very essence of universities, the National Health Service and a number of other official agencies caught up in this scandal is fairness, impartiality and integrity? I am afraid it does look very much that way. For, the flaws in this pseudoresearch are now so plain that it is difficult to see how anyone can still believe that it can be defended.

  • Sheila

    As with your esteemed POTUS the axe is slowly coming down! Thanks for all your hard work David

  • Liessa #pwME

    A Dutch proverb that certainly applies in this situation is “een kat in het nauw maakt rare sprongen”, literally ‘a cat in a tight (space) makes weird jumps’, – “expect someone/people to do strange things when they have no options”.

  • Sleepyblondie

    I have severe ME and find it difficult reading long posts, but I couldn’t put this down. I read it all in one go. You certainly gave her every chance of defending herself. The automated email responses prove that your emails were indeed reaching her. It’s both gobsmacking and upsetting that she continues to have the support of Bristol University, or anyone else for that matter. You couldn’t have tried harder to get her to defend her claims. Clearly, she can’t. All she can do is fool the unknowledgeable Thanks for everything you do on our behalf

  • SchroedingersDog

    You have the patience of a saint.

  • mesupport

    An unusual feature of this discourse is the shortage of trolling usually provided by BPS acolytes when reporting of these issues makes an appearance in mainstream UK media.

  • davetuller

    Thanks. I get concerned about writing long posts because I know it will tax patients trying to read them, but this one was necessary.

  • Susanna Degaardt

    Thank you!

  • pinklil

    I agree with SchroedingersDog … you DO have the patience of a saint. I appreciate there may be legal constraints (worth looking into) BUT I DO think it would be very useful to publish the video of the Exeter incident so that it’s available in the public domain and cannot be skewed in the way Crawley seems to enjoy skewing most things in her favour.

    There are so many ‘highlights’ to this post that I cannot pick out any particular paragraph though I must say I did enjoy your Swiftian aside… I get the impression Crawley has probably not read JS at all, or certainly not for a very long time.

    My overriding conclusion & mental picture on reading the whole blog was that of another of your Presidents in discourse with our own Queen: https://www.theguardian.com/uk-news/video/2016/apr/29/president-obama-sends-invictus-games-challenge-to-the-queen-prince-harry-video

    Boom!

  • pinklil

    If we’re going to expend energy beyond the ‘usual’ then your blogs are worth the stretch! This is a gem!

  • EzzieD

    Gosh, nobody can say you didn’t TRY to set things straight. Her refusal to reply and sort things out in an amicable and professional manner is arrogant, entitled and downright rude.

  • Tina Rodwell

    As ever David it takes me a couple of buckets of coffee to get through the … lost for words, how can describe what is happening here?

    I do find myself sadly giggling at the way you handle things. Why should you be put through this? Yet without aggression you point out the clear facts, your ability to see the irony is always a joy.

    Perhaps Ms Paterson has become so accustomed to writing these types of letters she is impervious to the gravity of the situation. She may have silenced the truth in the past and has now become a way of working for her. I will be intrigued to hear what their next move will be, when this well used tactic does not work.

    Thank you for your tenacity and vigorous efforts to get to the truth for us
    Tina

  • Joh

    Off topic, sorry, but your username made me chuckle, thanks! 🙂

  • Thank you David for continuing to pursue the facts of the matter. EC failing to even attempt to answer your legitimate questions speaks volumes.

  • flyingfox

    Yes, thanks David, for persuing inconvenient truth and asking the pertinent questions.

  • Esther Crawley used to have a Twitter account, but she took it down some time ago. Some years ago, she also contributed to the heavily moderated forum associated with the PRIME Project – a project initiated and funded by GUS and managed by Crowe Associates in association with Minervation (which launched the National Elf Service platforms).

  • clark ellis

    Gosh, is that the worst you wrote her? I never expected you’re emails to be harassment of course, I know that’s just something Crawley says to deflect attention from the flaws in her own poor research by defaming you, her critic, but I thought you might have been less courteous, that your language would be more colorful, perhaps a little rude. But it looks instead like you’ve been professional. Sure, you didn’t exactly come across as sincere when you wished her luck with her grant applications but that’s hardly a crime – or surprising, given the poor quality of research she has produced to date with previous funding.

    Thank you David, this was a very interesting read.

  • Anne

    And meanwhile, Esther Crawley gets a ‘commendation’ at the 2017 Maddox Prize awards for standing up for science…
    http://senseaboutscience.org/activities/2017-john-maddox-prize/

  • davetuller

    What??? You don’t think that was a sincere comment?? 🙂

  • clark ellis

    What can I say David, your reputation has taken a hit recently 🙂

  • davetuller

    I have only warm, fuzzy feelings for Esther, and I wish her all the best in this merry holiday season.

  • Barry

    I think what EC may not quite be up to speed with, is that in this digital world it is much harder to sweep your mucky science under the carpet, and expect that no one will notice. Especially wheh we have David helping fight our cause for us :).

  • disqus_joh5XNAv6w

    Surely, in the current Trumpty trump climate of US Climate change denial, not to be left out, the UK is exploring how the masses can be entertained this Christmas with, “An Inconvenient Truth”, the sequel UK style! – Documentary….or -“How the UK medical climate is about to experience “climatic upheaval”. ‘Speaking of “trumpty trump”, and this being a paediatric issue, a childhood rhyme comes to mind, https://www.youtube.com/watch?v=_a-m3pH9Dr8“Nellie the elephant packet her trunk and said goodbye to the “circus”, off she went with a trumpety trump, trump trump……..

  • Anil van der Zee

    Sad that this needs to be done. Your e-mails and blogs are indeed a scientific and academic dispute. She turns it in an episode of EastEnders. People are suffering. She is part of the reason why we patients are still in a stranglehold. We need answers. She wants better science??? Her silence is definitely not helping.

  • jimells

    I wish her a warm bunk and fuzzy blanket… in a jail cell. Although I do feel sorry for potential cell mates.

    I know that sounds harsh, until one compiles a list of lives destroyed by the Wessely School, and another list of young people still living in fear of being seized by the state and removed to a locked ward.

  • Joh

    Thank you so much, David!

  • cluecat

    Have UC Berkeley and Bristol actually had that private conversation at the senior level about your behavior, or is that smoke and mirrors like the non-existent cease and desist? (Do they actually have an institutional relationship?)

  • davetuller

    I wouldn’t necessarily know. I might only find out something like that if there were a formal complaint and then Berkeley completed an investigation. I had never heard about their institutional relationship, but Berkeley has relationships with umpteen universities here and there. I think to file such a complaint would not be a good idea for Bristol in the end. They would lose, and it would likely get significant press coverage that would make Bristol look very bad. So the idea is ridiculous. Esther has accused me of libel, and never communicated with me about it despite all my invitations and offers. I have a right to be informed about mistakes and then to correct them if I want. They have no cause to complain unless they document what is libelous, and I refuse to correct legitimate mistakes. My tone is not a cause for complaint.

  • Seven

    Can we find out who does the nominations? Follow the trail?

  • Alison Orr

    I braced myself for your snacking and sarcasm, but saw very little of it. I thought your tone was professionally informal and absolutely acceptable. Thank you for being our terrier and not letting it go!

  • Pingback: Trial By Error: My One-Sided Correspondence with Professor Crawley - VETMEDICS()

  • Leela D

    It’s a total gift to have such a powerful and persistent advocate. You are so articulate and thorough, and your passion for this long-overdue discussion and clarification is beyond heartwarming. Thank you so much, davetuller, for amplifying the patient voice that others are desperately trying to silence and co-opt. Oh, the irony–on so many levels–in “Dare to Disrupt”!

  • Jen

    It was a good read. I can only manage a heartfelt thank you and how much I appreciate the efforts you have made to challenge poor studies and unsound representation of the data. I hope this helps the science to become more rigorous and robust so we have an honest analysis to what therapies help patients, which have no effect and which may hinder recovery. I was harmed by the GET CBT combo, after trusting the PACE trial as being honest about its findings. I do not think it’s too much to ask that treatments are safe for patients and set up is not lax and results aren’t fudged for a political agenda. How can we as patients trust science, when studies of such poor quality are not challenged thoroughly. Thank you for not being fobbed off, or scared off by unfounded accusations. Keep up the good work.

  • Abbie RavenMoon Wayne

    We can’t thank you enough for bringing this huge issue out into the open, why on earth would I put my daughter’s welfare into this woman’s hands when she can’t substantiate her evidence ? She does not speak for my daughter, she does not have my consent to gather any information on my daughter nor myself, not without absolute proof that her ‘treatments’ work, if M.E is at a cellular level, mitochondrial, then how on this Earth is grading up exercise going to help ? After trying to get my daughter into school, a place she once loved, to now wheelchair bound due to exhaustion on all levels, this woman is dangerous to all of our children.

  • Jen

    You have been libelled and your good name bismirched by Crawley at public events (as have patients been unjustly maligned). Bristol should be quite concerned. I hope they look into it more thoroughly and don’t just take Crawleys version of events as this could leave them with considerable egg on their face.

  • Lois Addy

    don’t be. you use sentances. and paragraphs and proper grammar. so I can read some. then pick up again after a rest. and so on. repeatedly. take the space you need to make the argument and conclusions.

    also, you don’t pad your writing with unecessary fluff and it’s flowing well so not hard to read and take in.

  • Lois Addy

    oh what a good saying. and it’s totally true.

  • Lois Addy

    I’m also quite shocked by the use of ‘muppets;. on the one hand yes, they’re cute puppets by Jim Hensen. but yes very much so, a muppet is someone who has no critical thinking and just plunges through life from one crisis to another. so if someone makes a silly mistake (like putting the milk in the dishwasher instead of the fridge) they’re a muppet. I am shocked they didn’t consider the derogatory nature of the acronym. it doesn’t even work, it should be mupps as an acronym.

    considering there’s equality and awareness training, and we aren’t allowed to say things like blue sky thinking because it has bad connotation for some (epileptics maybe? I can’t remember) then I am startled that muppets made it as far as it did.

    then again maybe is a generational thing, I think the reach of social media, and hte internet comes as something as a shock to some in their 40s+ it’s not something we grew up with and if one doesn’t engage with it, one doesn’t realise how far and how fast it goes.

  • Lois Addy

    often someone is called muppet in a loving way in a family, or say my carer, if I drop something, will say you muppet, let me take it etc. but it can turn and be something nasty also – it depends on context. as such acronyms should be very carefully framed so they AREN’T able to be twisted to make people feel ‘lesser’. I hope Prof Crawley has a rethink about the acronym.

  • Sleepyblondie

    Freedom of information request???

  • Wendy Boutilier

    You have conducted yourself with full transparency. I suspect that EC has no experience with transparency and therefore can’t recognize it. The UK & European Psychiatric Collaboration has caused irreparable harm to those who have no hope of ever leading a normal full life again. Maybe this is all they have to offer. All their cruelty, manipulation, no compassion, no understanding, and certainly no empathy. As hard as Myalgic Encephalomyelitis is to live with, given the choice I would never exchange it for their emptiness.

  • Steve Hawkins

    I think that you ought to be getting in touch with Nature about SAS using the ‘Maddox Prize’ to promote quackery. Although they have awarded this year’s main prize to a vaccination campaigner as a way of bashing the antivaxxers in a way that Maddox might have done, I doubt that he would have agreed to their continued commending and promotion of Crawley’s discredited work, or her refusal to engage in scientific debate:

    “Professor Crawley works to promote a better understanding of CFS/ME in the face of complaints to her employer and professional bodies and accusations of fraud and misconduct.”

    If Nature is to be taken seriously in its name being put to this assertion, it must surely be able to come up with evidence as to why complaints about Prof Crawley’s research, conduct, and vilification of M.E patients are not justified.

    A respected science journal should not be letting its name be used for political purposes by a libertarian group with an axe to grind against any upstart members of the public, or patients, who dare to question the vested interests in control of much of UK medicine.

    http://senseaboutscience.org/activities/2017-john-maddox-prize/

  • Polly

    Gripping stuff – well worth the hazards of scrolling. In the interests of transparency I don’t have ME or CSF but do have a rare neurological condition (Mal de Debarquement Syndrome) that is sometimes considered in the dated way ME has been. In the rare conditions world I have witnessed many shocking attempts to land-grab poorly understood conditions as being ‘medically unexplained’/’functional’ or whatever expression is in vogue at the time, so have followed the ME story when I can since it parallels our experiences. Also I live in Bristol and it was here that a neuro-psych attempted to land-grab MdDS as ‘functional’, via me. Epic fail. And one that resulted in the North Bristol Trust telling me that they would consider taking legal action against me if I wrote anything they considered ‘defamatory’ about them. My response was to say they were welcome to read anything I intended to make public before I did, since a) I didn’t want to be defamatory about them (since I now receive great care there) and b) I didn’t want them to waste tax payers’ money on a legal process. Their response was along the lines of ‘it doesn’t work that way’ – tell me about it 😉 So, it’s a different saga but I applaud you and thank you, David.

  • Elizabeth Sanchez

    Thank you David for your persistence and your clear, unambiguous and transparent defense of ethical and evidence based science.

  • pinklil

    Very interesting perspective..thank you. I’m not surprised by Bristol’s behaviour, although I’m sure it’s countrywide, because they do seem to have chased themselves down the rabbit hole when it comes to trying to appropriate anything ‘unknown’ to the MUS wastebasket. I applaud *your* tenacity in dealing with them so effectively and for recognising the pattern of behaviour in other diseases in similar settings.