By David Tuller, DrPH
*I have corrected the paragraph involving tweets to Sir Simon Wessely. See note at end of post.
A major news organization is preparing to publish what seems to be a piece about me and my work. The piece also seems to be focusing on the narrative that dangerous and irrational patients are running rampant and threatening eminent scientists. The journalist—one of the many BFFs of the Science Media Centre among the UK press corps—could suggest that my work is somehow enabling horrible behavior.
I also presume the article will focus not on the substance of my criticisms but on some of my strategies–like tearing up published papers in public presentations, sending multiple e-mails to researchers in my efforts to seek comment, or disseminating my concerns widely to public health officials, journal editors and others. I expect that it will convey claims from some of these researchers that these strategies are tantamount to harassment.
The piece is likely to include anecdotal accounts from patients who say they got better through CBT, GET and perhaps even the Lightning Process, and could suggest that my work is depriving people of the opportunity to obtain treatments that they want and need. As I have said previously, I cannot question people’s experiences of improvement or recovery. But we generally do not develop public health policy or clinical guidelines based on anecdotal testimony but rather on the basis of scientific investigation. And the science in this domain is deficient, for all the reasons I have pointed out over the last few years.
Since I am posting this before the piece actually appears, it is possible things could change and my predictions about it will not be borne out.
**********
From my perspective, I have been engaging in vigorous and tough scientific criticism. Like many journalists and social commentators, I have sometimes used snark and sarcasm to make my points. I have not reviewed every single post or word I have written or said about this matter. But because I can get seriously agitated over the methodological and ethical lapses I have stumbled upon, I might sometimes have used language that, in retrospect, has been unhelpful and would have been better to avoid. I deeply regret if I have said or written anything that could be used as an excuse to avoid the substance of the debate about the many problems with this influential body of research.
Some of the controversy over my work, I suspect, relates to trans-Atlantic differences in what is considered robust expression of opinion and what is considered over-the-line. But let me say here, one more time, that I categorically condemn any sending or disseminating of death threats, threats of bodily harm, and any other kinds of threats. I also categorically condemn bullying, abuse and any efforts at intimidation, whether via online forums, Twitter, e-mail, Skype, Instagram, Snapchat, WhatsApp, any other media currently available or to be invented in future, or in person. There is simply no place for such behavior.
I also unequivocally condemn harassment. But what is considered harassment can sometimes be in the eye of the beholder. In the UK, for example, the CBT/GET ideological brigades and their enablers at the Science Media Centre have framed the filing of freedom of information acts as a form of harassment and “vexatious” behavior. I disagree with these notions. Progress in science depends on rigorous and spirited debate—something that the PACE authors and their colleagues appear to find offensive and distasteful. Since their science does not stand up to scrutiny–as evidenced by the 100+ experts who have signed open letters about PACE to The Lancet and Psychological Medicine–I suppose this reluctance is understandable.
**********
So let me discuss my e-mails, which I gather have caused distress to some of the people whose work I have criticized.
As readers know, I have been particularly critical of studies conducted by Professor Esther Crawley. I previously posted and explicated all my e-mails to Professor Crawley here. As I reported earlier today, Bristol in now investigating some of her work following questions raised by the UK Health Research Authority, which oversees the domain of research ethics. On top of that, one of her studies was slapped with an editor’s note that acknowledged the serious concerns raised about the research.
I hope these details appear in the news story currently being prepared for publication, although I have no idea if they will. The fact that some of Professor Crawley’s research is now under serious scrutiny should raise questions about the accuracy of and motivation for any claim that my work amounts to “libel” or “harassment.”
After Professor Crawley publicly accused me of libel two years ago and failed to respond to my requests for evidence or documentation, I sent a series of strongly worded e-mails to the board of the CFS/ME Research Collaborative. Professor Crawley at that time served as the organization’s vice-chair. I felt it was within my rights to point out the deficiencies of the biopsychosocial research in this field, including PACE, and to ask the CMRC leadership whether it had any comments about the vice chair’s libel accusation, given that her actions reflected badly on the group as a whole. I found CMRC’s responses to be inadequate, and in my e-mails I expressed myself accordingly.
I have never e-mailed Lillibeth Larun, lead author of the Cochrane exercise review. However, I have criticized her work, both in blog posts and in meetings with health officials in Norway. I also organized a statement of support for Cochrane that outlined some of the issues with the exercise review. I reject any suggestion that such actions constitute harassment.
During the first year or two of this project, I sent many e-mails to the PACE authors and to Richard Horton, editor of The Lancet. Most of these involved efforts to obtain answers or comments about issues I was planning to raise in articles and blog posts—something that every journalist is expected to do. In other cases, I followed up my blog posts, even if they hadn’t responded to my requests for comment, with e-mails providing links to posts I had written. This is also something I have routinely done in my years as a journalist. Since I wrote dozens and dozens of posts during this time period, I sent many dozens of these e-mails. At some point, I decided not to bother anymore.
*This next paragraph has been rewritten. See original paragraph at end of post.
I have never, so far as I can remember, e-mailed Sir Simon Wessely. In checking my twitter feed, I found a batch of tweets to him from the first year of my investigation; most of them were responses to some propaganda about PACE he posted shortly after my initial series. They all seem pretty standard and polite to me. In 2016, after Sir Simon commented on an excellent piece by journalist Julie Rehmeyer on the unraveling of the PACE trial, I tweeted that his remarks were “drivel and nonsense.” He promptly blocked me. Later on, when he involved a prominent American lawyer in the conversation, I joined the fray even though I remained blocked. I cannot exclude the possibility that there might be some other tweet conversations in which we both participated that I have not found. But if Sir Simon considers anything I wrote to be “harassment,” he has a remarkably low threshold for what that word means.
I have written numerous open letters to health officials, journal editors, members of Parliament and others involved in the debate, in many cases cc-ing others with an interest in the matter. These open letters have included strong criticism of the studies I have reviewed. I am sure the researchers involved in these studies have disliked the fact that I widely disseminated my negative views of their work. Their dislike is understandable but is not grounds for accusing me of harassment. It is important to note that no one has refuted the substance of my criticisms. They have disputed my interpretations. That is certainly their right.
**********
Today I sent back some answers to a final set of questions sent to me yesterday by the reporter. Here are some of them.
Please could you confirm that raised just under $88,000 in crowdfunding last year (April?) to pursue your campaigning work, blogs, talks and presentations
I don’t really think of it as a “campaign.” My crowdfunding was a “campaign,” because that’s the term that’s used–at least in the US. I have never envisioned myself as pursuing a “campaign” but rather conducting an ongoing investigation of bad science. But yes, I raised just under $88,000.
To clarify–that money goes directly to Berkeley, not to me, and I don’t see a big chunk of it. My 50% salary is $47,000. Almost $30,000 covers my employment benefits, mostly the health insurance I get through work. Berkeley takes a 7.5% cut. The few thousand $$ left-over I use for travel expenses.
In our conversation in New York in August, you said you had no medical qualifications and you were not a medical doctor. Is this still the case?
Ha! Of course, that’s still the same. I have not become a medical doctor in the last six months! I am the son of an MD but have no particular medical qualifications. I have never claimed otherwise.
And please could you say whether you have any other medical or scientific qualifications?
During graduate school, I studied epidemiology, microbiology, anatomy, physiology as part of my coursework. I had multiple lab courses as well. I have considered getting a nursing degree as my next step in 2-3 years, so I have taken all the required prerequisite coursework. I cut a cadaver. Does that count?
I should also point out that it really isn’t necessary to be a genius or a medical scientist to understand that it is impossible to be “recovered” and “disabled” simultaneously on an outcome measure, and that any study that includes this anomaly–like PACE–does not belong in the domain of inquiry we call “science.” I remain astonished that you, the SMC, and others in the UK seem to feel this specific feature of PACE is not a problem. Can you or Dr Horton or Professor Sharpe point me to another study in the literature in which participants have met outcome thresholds at baseline, before any treatment at all? That aspect of the study caused universal shock among my colleagues at Berkeley, Columbia, etc. I do not understand how a reasonable scientist would endorse such a methodological paradox.
I will say the same thing about studies which are falsely portrayed as service evaluation and are exempted from ethical review on that basis. In the case of Professor Crawley’s school absence study, she herself conducted dozens of in-person interviews. This automatically invalidates any possible claim that the study could ever qualify as service evaluation. It is troubling that an experienced researcher like Professor Crawley would commit such an elemental error.
My understanding from our conversations is that you had a long-time friend who got sick in the early 1990s – was this friend diagnosed with CFS/ME? And was he/she part of the reason you became interested in this area of research?
Yes. I have no other personal stake. But he was diagnosed in the early 1990s, and I didn’t look much at this till the XMRV situation in 2010-2012. So it’s not like I jumped on it. The whole thing confused me as much as anyone. I had never heard of PACE, but it came out during that time–early 2011. Once I recognized what a mess it was, especially after the recovery paper came out in 2013, I figured I’d take a look at it when I could spare the time. That came a couple of years later. I showed it to my epidemiology and biostatistics colleagues at Berkeley before I took it on. They uniformly thought it was an atrocious piece of work—just like Professor Racaniello did when he first saw it, and Professor Bruce Levin, his biostatistics colleague at Columbia, who called PACE “the height of clinical trial amateurism.” My epi colleagues immediately decided to use it as a case study of awful research in their courses.
You’ve told me in previous conversations that you campaign because you want to help patients with CFS/ME – to give them a voice they feel they don’t have without you – is that still part of your motivation?
Certainly helping patients is part of my motivation, but the main motivation is to correct bad science. I didn’t realize what I was getting into when I started. In this case it appears that the scientific enterprise has been failing in its self-correcting imperative. I saw that patients were making cogent critiques in peer-reviewed journals, blog posts and all the appropriate venues. But very little was happening because their criticisms were framed as unreasonable, untrustworthy and anti-scientific, and so the concerns were ignored and dismissed. I find it very troubling when Professor Sharpe and others compare those who raise questions about PACE as akin to climate-change deniers.
An example of this unfortunate approach to debate was Australian professor Andrew Lloyd’s decision to slam those whose letters about PACE were published as correspondence in The Lancet. He accused them of making ad hominem attacks. This was clearly unfair. These letters expressed cogent and pertinent concerns. There was not an iota of ad hominem-ness (is that a word?) in them.
Also, you have described your mission as being determined to discredit the PACE trial and its authors, and to debunk what you see as bad science to make space for what you see as good science to take its place – is that a fair reflection?
My goal has certainly not been to “discredit” the PACE authors. I am sorry if I indicated or said that at any point; if someone were to point out such a statement to me, I would retract it. I have no respect for these people, given their gross violations of scientific norms, but I have no interest in them personally one way or the other. My goal initially was to push for an acknowledgement of the problems with this work and for the correction or retraction of misleading claims. Since that is an almost impossible task when editors fail to take due diligence or respond appropriately to valid criticism, my goal became to prevent the bogus findings from being cited in ways that would mislead people about the efficacy and safety of these treatments.
So it would not be correct to suggest that my motivation involves seeking to discredit the authors themselves. I certainly have wanted to discredit their work, and I would have much preferred them to behave like honest investigators and acknowledge the self-evident problems with their work and correct them. However, I recognize that discrediting them personally or damaging their reputations is a likely or inevitable byproduct of the work I’m doing. Had they responded appropriately and corrected the scientific record, I believe they could have minimized the ultimate reputational consequences of their actions.
It is certainly not my fault if, say, Professor Crawley’s reputation is damaged because others now see that some of her research is fraught with methodological and ethical flaws. I hope the fact that her work is now under scrutiny at Bristol and that one of her studies was slapped with an editor’s note acknowledging the issues I outlined will be mentioned in your story, since both of these developments are the result of my investigation. I hope you will also mention that she has refused to explain, support, or withdraw her outstanding libel accusation.
**********
*Correction:
In my haste to get this post out, I mistakenly wrote that I had only one direct contact with Sir Simon Wessely–after which he blocked me. I should have done a search rather than relying on my memory. I apologize for the error. Here is the paragraph as it initially appeared:
“I have never, so far as I can remember, e-mailed Sir Simon Wessely. In 2016, after he commented on an excellent piece by journalist Julie Rehmeyer on the unraveling of the PACE trial, I tweeted that his remarks were “drivel and nonsense.” (Or maybe “nonsense and drivel.” I can’t really remember.) He promptly blocked me. That was my single direct contact with him.”
Comments
45 responses to “Some Thoughts About an Upcoming Article”
Good job David! That means they’re afraid of you.
As Anton says they want to silence you, it shows what a fantastic job you are doing.
There is nothing wrong with your approach. You are simply critiquing deeply flawed research.
To state the obvious truism: “First they ignore you, then they laugh at you, then they fight you, then you win.”
It seems likely they’ve moved on from the ignorance/derision strategy, so that’s progress. Well done David!
Good robust response. I thought the fact that as only Danny Blanchflower was active after the M.E debate meant that they were not making much of a response but now Richard Bentall has taken to trolling on twitter. The M.E debate has brought attention to the RCGP training and Bentall was a author of the FINE trial.
My view is that this is a response their own goal in giving you the opportunity of drawing attention to the fraudulent advice in the training program rather than anything to do with Crawley who was quite obviously sacked from the CMRC as a face saving exercise. If this article is published it will be interesting to see who retweets it and who they are connected with. There will obviously be FINE trial connections Bentall having already started but how many connections to government and the Royal College of GPs will tell more about what driving this.
Q1) Is this reporter a medical doctor? If not, then why do they think David Tuller should be?
Q2) Are they trying to discredit Tuller as a journalist/public health reporter? It kind of sounds like it to me.
And there was me thinking they were keeping up the silent approach after the House of Commons ME debate. Well I guess they still might but I hope not, I’d like to see how they twist this.
Flipping ‘eck, I beginning to think there is a book in all of this.
Thank you so much David for your tenacity and eye for detail which has shine a light in some very grubby corners.
Dear David,
It was inevitable that at one point they would try to smear you or make a direct hard attack of some kind.
You have done nothing to apologise for. It’s not a difference between how people in two countries express themselves at all. It’s nothing to do with the odd snarky word or one email too many along the way or ripping up the PACE trial.
If you can, please put that aside and realise that even if you had conducted yourself in an even more reserved , more pristine way, the mere fact that you were involved in this area and were listening to patients, would have always led to a serious attack of some sort.
We are very happy that you chose to help ME patients. Thank you for all the great work and your bravery and integrity. The other side lack these attributes, they are wrong and this attempt to smear your reputation is the latest step in their ongoing hate campaign.
They can’t fight the science so they are trying to destroy your reputation now to silence you. It’s not going to work.
You raised valid points and they ignored you, presumably because they thought they could treat you as the patients are – with contempt. Times are changing, more and more people are becoming aware of the fraud that was PACE. Thank you for your work.
The framing of the article seems like a personal attack trying to discredit you personally so it is with some irony that it would try to frame it as some weird attack on people you don’t even know instead of reporting on the substance. Typical of the SMC’s nature as a PR outlet.
Likely Wessely is once again abusing his influence to his own benefit. Keep it all in the open, your process has worked because it is objective (calling garbage garbage is absolutely objective) and transparent. This is will be another own-goal soon enough. Hopefully Berkeley does not feel intimidated by this weak attempt at killing the messenger.
It could well be that it’s a genuine journalist doing due diligence because this is what they would have been told by the researchers and they would need to check. With some luck they may see through the bullshit, but that would be a first.
Were there some questions by the way about the alleged abuse and how it was dismissed by the information tribunal? This is far too often left out and it’s journalistic malpractice to repeat flimsy accusations from people who have attempted to mislead a court of law.
Clearly this is having some impact. I hope you persist. It will all be proven right in the end anyway.
Let’s hope it blows up in their faces and you get some air time to expose the results of your investigations into to flawed science and the scandal that is PACE and G.E.T.
Thank you for your work highlighting the scientific failures of PACE. I do hope you continue this as your highly skilled analytical work is very much needed as patient voice is ignored and treated with contempt by UK policy makers for M. E and these researchers. There has been no regard for real outcomes or extreme suffering of many patients. Keep up the excellent work.
With the BPS brigades careers, reputations and bank accounts under threat, it is expected given their history of attacking patients.
The irony that the BPS cult is accusing patients and a journalist of abusive behaviour is not lost on the world.
From what I understand, UK journalist Christopher Booker was also a target for reporting on a child who had ME but was taken from his family.
Thank-you again, David.
You continue to conduct yourself, your research, and your writing in an admirable and ethical way. (Always “non-ad-hominem-y” !)
Amazing that you’ve written 3 separate posts today.
So very grateful for your work.
The leading nature of the questions being asked makes it clear that the reporter is not there ‘to report’ but to promote a narrative. One wonders if she is at all familiar with the study in question, whether or not she’s actually read it, whether or not she actually knows any people with ME.
If these treatments are helpful to so many, it’s literally unbelievable that they would have produced such a negative response in this patient population.
But then, logic left the building of SMC a long while back.
Hey Doc – You’re definitely scratching some nerves. Well done.
Thank you David. As ever the calm voice of common sense. I am proud to contribute to Berkeley.
that seems like an eclectic and less than ‘open ended’ set of questions, but I’m not a journalist so I don’t know if it’s normal or not.
What I do know is that you came to my house in 2014 for a whole weekend, to talk to me about my experience of the PACE Trial (I was on cbt) – I was a bit wary but looking at your work online I thought well he seems like a person who is capable of looking at issues using critical thinking skills rather than with a specific conclusion in sight.
My recollection of you is that you were scrupulously fact based, you didn’t make wild suppositions that weren’t backed up by solid incontrovertible data, you were consistent in your thinking and also knew far more than me about the wider implications of the PACE Trial. Before you came to see me, I knew what the Trial had been like for me personally (disappointly ineffective but also I think slowed my subsequent decline – basically missold as a cure when it’s actually symptom management only) and that the papers when published felt at odds to my personal experience, but it was only when I met you and read your work subsequently that realised how the goalposts had been moved – which goes some way to explaining why my experience on PACE didn’t seem to be reflected in the published papers.
I did not feel criticised in any way for going onto the Trial uncritically, in that I hoped it would help me and if it helped someone else then great. And you took great care that I did not feel in any way abashed for remaining unaware of the problems with inconsistent scientific methodology, it didn’t feel personal at all. And you weren’t telling me what to think but explaining to me how the goalposts had been moved and letting me think for myself.
You also went and had a chat with my family to see their point of view, and I found it very interesting that I’d rationalised some things (like how cross and let down I’d felt post Trial but had forgotten) and the differences they saw in me as I got worse in fits and starts from 2006 to 2014 (I was on the Trial in 2008). There was no uptick in my condition at all from the Trial, it was all about managing a decline so it was less painful.
I bear no malice to anyone involved in the Trial. At Kings, Trudi Chalder for example is the first medical person who said they believed I was ill and no it wasn’t all in my head. My sole brief telecon with Peter White around the time of Alan’s Tribunal FOI case, he was hugely sympathetic that I had got worse, gone severe and couldn’t get any help from the nhs me/cfs unit in Northumberland cos I couldn’t get there.
That said, I still do not understand why the Trial authors maintain there were no interpretation difficulties with the Trial data. The Tribunal outcome enabled an analysis of data on the original Trial measures, and on the revised ones. The differences are significant – not merely statistically but in actual numbers AND the one thing that has dawned on me since I met you David, is that those significant differences have led to people literally losing their lives, poorly applied treatments have been ruining people’s health on a permanent basis. So for me, the Trial needs to be seen in the context of the two sets of numbers and the revised measures. That the papers were misleading, and that the Trial is far from the Gold Standard it has been portrayed to be in terms of how it was changed and also how the outcomes have been portrayed. It wasn’t even that great in terms of how it was run – I didn’t get the Specialised Medical Care I kept being told would happen re painkiller reviews etc (though to be fair that was totally accurate to real life in that very few people get any help at all in terms of SMC so to a certain extent that failure of the Trial was a replication of reality), but it did give me some techniques to help me manage my symptoms. But NOTHING more than that.
We remain in the situation that research is underfunded, there is no known (ie scientifically replicable) treatment that slows never mind halts or reverses the illness, there’s not even a reliable replicable way to diagnose it with any surety, and the causes remain unknown.
So in that context, I am hugely concerned that the refusal to accept fact based, science based analysis and criticisms of the failure of ‘industry standard’ never mind ‘best practice’ in the PACE Trial papers, is throwing a long shadow and distorting the landscape of the patients’ reality – that they are genuinely unwell, magical thinking isn’t going to help and proper following of replicable scientific principles is what we need. We always have needed it, and those that support an acceptance at face value of the PACE Trial are standing in the way of that, they have in the past, they are now, and they appear to be intending to continue to do that.
As to whether you’ve been offensive to anyone David, sometimes I think your (understandable frustration with the refusal to be open minded and use critical thinking skills by supporters of the Trial) has been visible, I don’t see that this makes a difference to the factual scientific arguments you present. People are entitled to their own opinions BUT NOT to their own facts. An American politician said that, I have no idea what his politics were, nor of anything else he said, but in saying it, he added to the sum of human knowledge quite considerably. I am fed up of PACE Trial apologists telling us black is white or yellow or purple. It’s not. And it’s also not acceptable for the apologists to say black is white but that a patient is not able to say no it’s not with understandable frustration as it’s affecting their lives personally without it being labelled harrassment.
The Tribunal threw out the harassment issues didn’t they at the time as unsubstantiated. I think your work if considered by Tribunal would pass that same test with flying colours and harrassment would not be found.
We wait and see what this journalist will produce. Whatever they write I will read it with interest. and be polite about it. If there are factual scientific errors or fallacies then they should be challenged, but people are entitled to their own opinion without being prejudged or derided in advance. Or even after the event.
I wouold imagine the journalist will be somewhat surprised to see their questions and your responses published, but no doubt there’s some journalistic unspoken rules about being specific about whether or not discussions are on or off the record and to be kept quiet until publication or not.
Keep up the good work, David. Trying to discredit you (if that is indeed the case) by using the media, because you’re exposing the truth, instead of responding directly to the issues that you raise, is a sign of desperation that only serves to discredit those who are behind it. Anyone who is aware of the issues around ME research, that you’ve highlighted so efficiently over the past few years, will understand the true nature of your work. Anyone who isn’t involved in ME issues will read whatever is written and will, most likely, forget it within a very short space of time, as is the norm where ME is involved. You know that your motives are entirely honourable, as do the hundreds of scientists, academics and MPs, and the thousands of ME sufferers, who support your work.
As we patients sometimes say, all of this will be a movie some day. It’s not hard to imagine that a key character will be a crusading journalist. And I don’t think he’ll be speaking with a British accent. Keep calm and write on.
In articles published in mainstream media I have never seen any evidence that you are pursuing any ‘campaign’ in particular on our behalf. However, the outcome of your quest for ethical, and accurate science and bringing the establishment to account in various countries benefits us (people with ME/CFS) . This reporter is using very coloured language and may be guilty of editorialising, depending on how balanced the finished piece is. Good luck. I have nothing but faith in your professional and personal conduct. At the end of the day those who choose to shut down ethical reporting will not last…. Perhaps they are not as principled (in terms of journalistic balance plus really investigating and uncovering the truth) as the ABC in Australia tends to be in the majority of cases. Wishing you all the very best.
Dear David,
Thank you so much for all the work you’ve been doing.
As I know from personal experience, GET and CBT is devestating to people with M.E.
I also was part of a trial back in 2001, also in Bristol (although this one was not run by Esther Crawley), that was run before the PACE trial.
Like the PACE trial, the results have never made any sense to me! Apparently everyone who participated showed improvement?!! Not sure where I was on these results as I went from being able to walk unaided to being in a wheelchair by the end of the trial!
Have always wondered if they made simular changes to their outcome measures that the PACE trial did? Makes me wonder if it’s more wide spread? And common across all the GET/CBT trials that have taken place?
Please keep up all the good work you’ve been doing.
Here we go again. The UK SMC 1930s-style smear story handed to a reporter, the cartoon about being too tired to harrass, the question about condoning, …
… part of an attack on a population of sick people. Now seemingly on David and Vincent too.
Is it a good scientific hypothesis that Casey Fero died because he mistook the minor features of being a couch potato for being a disease? Or is it
an error in ontology? Is it science or politics?
The attack expands to more diseases. More distant are biology and human rights.
Perhaps it is because David will investigate the UK SMC, which could lead toward fundamental perpetrators of the misopathy.
These smear attacks are pretty normal from that group, and they rarely damage the perception of ME. In fact, the media promotion of non-patients being at odds with each other almost universally undermines the quack brigade, since it inherently undermines the narrative of “it’s just some crazy patients who don’t want to believe they’re crazy.” No doubt you’ll have a bit of a tough time of it, but based on similar exchanges we’ve seen in the past, patients will come out of this completely unscathed.
You’re being attacked because they fear you. Don’t apologize for your approach, or being impolite. Protest against inequity is never polite, and inequity is what has resulted from polite patient voices and polite scientific analysis being ignored. My suggestion is to take the AOC approach – haters gonna hate, so keep on dancing in their faces. They’re giving you a platform, whether they intend to or not, and I have no doubt you can use that to do even more good work.
The BPS scholars are what Professor John Ioannidis calls an inbred scientific group. They support each other and defend their paradigm, not matter how the evidence stacks up against them. Their work has been publicly rejected by more than hundred prominent scientists and clinicians, many of them without any prior allegiance in the ME/CFS conflict. In spite of that, proponents of the BPS paradigm continue to reiterate the message that their work is top class and that they are the innocent victims of an aggressive campaign by patients and advocates. I have asked BPS proponents if they think that the methodology in PACE—no blinding, no primary objective outcomes, heterogeneous study groups, post hoc protocol changes—should be applied in all clinical studies, but, alas, never received an answer. A personal smearing campaign against Dr Tuller would be a logical next step in their increasingly desperate rear-guard fight.
I have Asperger as well as ME CFS and they say autistic s lack empathy.
I now know what real lack of empathy is, its the Pace trial pushers and the people who want us to engage tell us while calling us militant extremists. . If people need to have nastiness to cure a disease they have bucket loads of it . They really need to be faced with ridicule and a court room with the victims able to express themselves for the first time.
We never thought you were a Medical Doctor.
We are sick not stupid
Trying to pretend you were passing yourself off as a MD is an invented smear.
having read numerous articles i noticed the psychiatrists themselves involved in the Pace trial calling themselves doctors telling us they were abused. Making the general population think they were just doctors and didn’t have an agenda. Psychiatrists and those who came up with the Pace trial for which they got funding know how to smear better than anyone else they call patients like me vile nasty horrible including my very sick sister who has a feeding tube in the media .
I do nmot want to engage with people who do not like me.
Thank you David for all the integrity and bravery you have shown whilst helping PWME. For me its important to tackle M.E. from all sides and I feel things are changing in the U.K.. Your work gives me hope and is as important to me as medical research, campaigning and raising awareness of the illness. Thank you
Forgot to mention that my doctor who was skeptical came round to ME CFS and helped me out said that psychiatry couldn’t help me and it’s better to rest etc. .Also wish to also wish to thank David for being a great guy. Met some really nice doctors who also have ME CFS also some who don’t
Well, if Saint Wessely’s name comes up in the article, you can point out his track record with the Camelford Poisoning and Gulf War Syndrome [Gulf War Illness].
Do not flinch david u r onthe side of truth and justice for a group of disabled people whos pain and frustration has been weaponised against them and they are now taking desperate measures to once again rewrite reality. Stick to your brilliant research of the truth and that truth to power will shine through. Do not flinch at their attempts to intimidate.
Flak from the BPS lobby? Dear David, I do hope you are not intimidated!
These people are corrupt and self serving like all bullies they are cowards terrified of being challenged and exposed which is why, in the most most civil manner, we must do both. Your work is the epitomy of such ethical challenge David and you will always be able to count on our support because you tell it like it is.
We should challenge the ridiculous straw man of an antisocial ME patient head on. Expose the unfounded claims that BPS is science and that ME patients are anti-science, when this is the polar opposite of the truth and the evidence of this is available for the world to see.
My crystal ball predicts another own goal for the SMC. Nothing attracts the attention of journalists like attacks on another journalist.
When their grip on the decision makers starts to weaken they always retreat to the media. There just isn’t a scientific argument that stands up anymore.
I’d much rather the media told Criona Wilson’s story (I heard yesterday she passed away) – and about her campaign work after her daughter Sophia Mirza died of ME. I don’t think that’s ever been told.
I think having over 40MPs just recently discussing the flawed “science” behind the PACE trial and the way patients continue to be harmed, neglected, ignored and in some cases put in a locked psychiatric unit must made been uncomfortable for the Wessely school and followers.
If you can’t find any scientific argument just discredit those who do – it’s been the usual tactic all along. In general it’s personal attacks on character, along with what we now know to be done blatant lies about how the researchers who want to “help” are somehow “victims”. If they really wanted to help they could start with honesty.
The truth – especially about the science – makes certain researchers very very afraid.
We’ve already had
– freedom of information act requests called “vexatious” – including those that were granted and referred to as not vexatious by the information commissor’s office
– Professor Anderson calling ME patients “borderline sociopathic” and “young men”
– research written about how ME patients are not actually “militant” (pretty sure that’s not happened to patients of any other illness)
– we’ve heard from Trudie Chalder via the Freedom of information act tribunal evidence that there wasn’t any harassment reported to the relevant universities, or the police (unless you count Trudie Chalder being heckled once),
– we got compared to animal rights activities by the Science Media Centre
– the Sunday Times mockup of death threat supposedly received (again not reported to the police)
– Esther Crawley using the Sunday Times mockup in her academic presentation as if it was a genuine note,
– Michael Sharpe’s nasty tweets implying that genuine patients would be “too ill” to object to his antics (though not “too ill” do graded exercise therapy apparently, and of course calling us the “undeserving sick”
– Wessely’s many many character slurs going back at least 30 years – including that the average doctor would be “disgusted” by ME patients
Number of researchers or clinicians physically assaulted or harmed by ME patients? None.
Number of ME patients forced into physically harmful treatment and locked in psychiatric units for forced treatment when they don’t have a psychiatric condition – far too many to count. RIP Sophia Mirza.
I guess this will re-hash the same stuff.
Thank you so much for your extremely necessary work. It is great that you are doing so well in revealing bad science. Thank you again.
It sounds like this proposed article may be planning to suggest that it is only David Tuller and a bunch of crazy patients who are being critical of the conclusions presented by the UK psychiatrists in their series of papers relevant to ME/CFS.
However, long before Dr. Tuller became involved in this topic, the vast majority of physicians and biomedical researchers focused on ME/CFS already were taking a position with regard to exercise intolerance that was sharply different than what the CBT/GET studies suggested.
I collected these quotes on the topic and put them together on this page in 2011, for instance.
https://paradigmchange.me/me/exercise-quotes/
Questioning the merit of research that has been published in a forceful way is a traditional scientific pursuit, and that is how scientific progress is always made.
Hopefully this journalist will come to understand that before the article is published.
Lisa Petrison, Ph.D.
Executive Director
Paradigm Change
You in my opinion are so brave, it’s a mission that not many would undertake especially after having such intimidation from the start. I just want to say thank you because you have pointed out the errors in the treatment I may never have to become worse by having to follow it. My illnesses have already been compounded by waiting for nearly 60 yrs for diagnosis.
Useful source for digging into the roots of the embroilment of ME/CFS deniers throughout the medical, political and media establishment in the UK. Tweeted to you because it won’t paste here.
Steve Brines’ response to the Parliamentary debate praised NICE Guidelines and a site that recommended CBT/GET…so clearly he is in the pocket of the BPS lot and as I predict, the ‘revised’ Guidelines will make no change.
These people have too much to lose…scientific sloppiness accepted, they lose academic credibility. If sloppiness turns out to be in a particular direction, and that direction proves to lead to financial gain, and that direction proves also to lead to serious damage to patients, and additionally if it were proved that this damage was done in full awareness of it by the promoters of the treatment based on bad science…at what point along that spectrum do we start talking about fraud, about suits for bodily harm? They have to get rid of you, David…I’d be careful…
And in the meantime, people with ME need to recognise that the medical establishment is dangerous to their health.
http://www.positivehealth.com/article/cfs-me/me-cfs-advice-for-2019
Will wait for the article to come out. But am sure there are hundreds of people out there who like me became an invalid on a GET course who were able-bodied prior to embarking on it. We don’t cease to exist just because the press choose not to write about us or because they choose to attack those who do care about fact-based medicine like David Tuller. As an NCTJ trained journalist myself, I have to say the failure of the UK press to cover the true story of what has happened to so many on these GET courses is truly lamentable. I don’t know who is to blame. The journalists for shoddy investigative skills, the editors for shoddy editing, or an unseen hand putting pressure on them not to cover our stories. But like so many, being unable to work myself anymore I greatly appreciate the work of David Tuller in doing what so many of us cannot do ourselves, and speak out against the treatments that have harmed so many.
Here is an excellent archive catalogue of media news articles and related material (including email correspondence between journalists and people promoting science and politics in the interests of M.E. patients) demonising disabled people as extremists.
There should be an annual award for people engaged in scientific activity who get subjected to harassment and abuse by the news media.
Such demonisation of patients and disabled people shouldn’t come as any surprise in a country that is the first in United Nations history to be investigated and found guilty of disabled human rights abuses (with PACE Trial funders, the pro-biopsychosocial DWP, at the centre of the human rights abuses), and where disability hate crime is at record levels.
The “harassment” campaign – references
https://www.s4me.info/threads/the-harassment-campaign-references.661/
A lot of fair points but also a bit of Trumpian denial eg about harassment. You really have no idea. As for the 100 experts, at least one wrote 99.99% of his pieces on cfs in blogs etc. Is he an expert? One published opinion piece made it into a journal. The rest was not peer reviewed and contained significant errors.
He also fabricated evidence etc etc. And he’s in your list. I’m beginning to feel some sympathy for the man who fired me from The Lancet. And that takes some doing.
Leave the denial to the people with psych issues. I know. Others know. Denial if our experiences undermines your other arguments. How accurate are they.
Don’t do fashion and group think. It hasn’t worked dince 1995 so why should it work now? Just be accurate and don’t deny pain and distress suffered by patients as well as disbelievers. Yes. The harassers aksp went after patients and ME specialists. I’ve kept a scrapbook of a lot of bunkum they attacked me with. There are ithers including American activists. It happened. Live with it.
As the BPS faction has government, business and charitable money supporting the SMC chiefly to propagandize on their behalf it is hard to see what is wrong with ME patients and others to wish some research and writing be done and to contribute to finance this.
They are to most terrible whiners. Let’s take up funds for a kleenex endowment for them.
I hope the reporter is going to have integrity and look into things like the FOI tribunal saying that they found no evidence behind the claims that serious threats to researchers were actually being made. These guys (Wessely et al) are dispicable, in my opinion, the way they use the media and reporters to present the image that they are just poor researchers.. scientists.. the good guys…under attack by patients if that is their plan.. again. Their science cannot stand on its own merits so they use politcal tactics instead. Is this at all becoming of a scientist to employ these tactics? It shows no scientific integrity. If youre a scientist and you push dubious ideas forward and weak science you are going to get push back from other scientists and patients affected by your work. You dont get to run to the media because you dont like the push back and because it means you lose your status and power and paycheck and cry “im being bullied” in an attempt to somehow get acceptance of your ideas. That is not how the scientific method works. Its shameful. If these damaging claims (to me/cfs patients) are going to be made again to the public i hope the media outlet spreading these damaging claims is going to allow the other side of the story to be told. I hope Wessely and anyone making claims of harrassement are publicly asked to provide evidence of any such claims they make in the same publication they make them. I hope the reporter tells of all the scientists around the world who reject the research of Wessely et al.
I have a masters in psychology from an English university accredited by the BPS. Right from my first year we learned about how to conduct research and errors in methodology and validity. The process was incredibly strict and rigourous. We wouldn’t have got away in a million years with conducting research like that in our first year at university let alone to be published in a journal. I don’t understand how this has been allowed to happen and how they think they are in any position to defend themselves. This is flawed methodology, end of.