Trial By Error, Continued: A Few Words About “Harassment”

By David Tuller, DrPH

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

 

Last week, a commentary in Nature about the debate over data-sharing in science made some excellent points. Unfortunately, the authors lumped “hard-line opponents” of research into chronic fatigue syndrome with those who question climate change and the health effects of tobacco, among others—accusing them of engaging in “endless information requests, complaints to researchers’ universities, online harassment, distortion of scientific findings and even threats of violence.”

Whatever the merits of the overall argument, this charge—clearly a reference to the angry response of patients and advocates to the indefensible claims made by the PACE trial–unleashed a wave of online commentary and protest on ME/CFS forums. Psychologist James Coyne posted a fierce response, linking the issue specifically to the PACE authors’ efforts to block access to their data and citing the pivotal role of the Science Media Centre in the battle.

The Nature commentary demonstrated the degree to which this narrative—that the PACE authors have been subjected to a wave of threats and unfair campaigning against their work and reputations—has been accepted as fact by the UK medical and academic establishment. Despite the study’s unacceptable methodological lapses and the lack of any corroborating public evidence from law enforcement about such threats, the authors have wielded these claims to great effect. Wrapping themselves in victimhood, they have even managed to extend their definition of harassment to include any questioning of their science and the filing of requests for data—a tactic that has shielded their work from legitimate and much-needed scrutiny.

Until recently, complaining about harassment worked remarkably well for the PACE team. Maybe that’s why they tried claiming victimhood again last October, when Virology Blog ran “Trial By Error,” my in-depth investigation of PACE. The series was the first major critique of the trial’s many indefensible flaws from outside the ME/CFS patient and advocacy community. Afterwards, the investigators complained that “misinformation” and “inaccuracies” in my stories had subjected them to “abuse” on social media and could cause them “a considerable amount of reputational damage.”

These claims were ridiculous—an attempt to deploy their standard strategy for dismissing valid criticisms. The PACE authors amplified this error in December, when they rejected Dr. Coyne’s request for data from a PACE paper published in PLoS One as “vexatious.” They had called previous requests from patients “vexatious” without attracting negative comment or attention—except from other patients. But applying the term to a respected researcher backfired, drawing howls from others in the scientific community with no knowledge of ME/CFS—the PACE team’s action was “unforgivable,” according to Columbia stats professor Andrew Gelman, and “absurd,” according to Retraction Watch.

(In fact, the PLoS One data, when ultimately released, will show that the paper’s main claim—that the PACE-endorsed treatments are cost-effective—is based on a false statement about sensitivity analyses, as I reported on Virology Blog.)

How did this theme of harassment and “vexatiousness” become part of the conversation in the first place? Starting in 2011, a few months after The Lancet published the first PACE results, top news organizations began reporting on an alarming phenomenon: Possibly dangerous chronic fatigue syndrome patients were threatening prominent psychiatrists and psychologists who were researching the illness. These reports appeared in, among other outlets, the BMJ, the Guardian, and The Sunday Times of London. The Times headline, a profile of Sir Simon Wessely, a longtime colleague of the PACE authors, was typical: “This man faced death threats and abuse. His crime? He suggested that ME was a mental illness.”

One patient had supposedly appeared at a PACE author’s lecture with a knife. Other CFS researchers had received death threats. Sir Wessely famously said that he felt safer in Afghanistan and Iraq than in the UK doing research into the disease—a preposterous statement that the press appeared to take at face value. News accounts compared the patients to radical animal terrorists.

According to the news reports, the patients objected to the involvement of these mental health experts because they were anti-psychiatry and resented being perceived as suffering from a psychological disorder. Editorials in medical journals and other publications followed the news accounts, all of them defending “science” against these unwarranted and frightening attacks.

In fact, the Science Media Centre orchestrated the story in the first place—not surprising, given its longtime association with the PACE team and its uncritical promotion of the various PACE papers. According to a 2013 SMC report reviewing the accomplishments of the first three years of its “mental health research function”: “Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.”

It’s great that the SMC not only spoon-fed Feilden the story but was so pleased with the reporter’s hard work that it nominated him for a prestigious award. In a brochure prepared for SMC’s anniversary, Feilden himself thanked the centre for its help in organizing the scoop about the “vitriolic abuse” and the “campaign of intimidation.”

Of course, patients were attacking the PACE study not because they were anti-science or anti-psychiatry but because the study itself was so terrible, as I reported last October. Luckily, a growing number of scientists outside the field, like Dr. Coyne and the top researchers from Columbia, Stanford and Berkeley who signed an open letter to The Lancet demanding an independent review, have now recognized this. How are patients supposed to react when a study so completely ignores scientific norms, and no one else seems to notice or care, no matter how many times it is pointed out?

The PACE study’s missteps rendered the results meaningless. Let’s recap briefly. The investigators changed their primary outcomes in ways that made it easier to report success, included outcome measures for improvement that were lower than the entry criteria for disability, and published a newsletter in which they promoted the therapies under investigation. They rejected as irrelevant their own pre-selected objective outcomes when the results failed to uphold their claims, and used an overly broad definition for the illness that identified people without it. Finally, despite an explicit promise in their protocol to inform participants of “any possible conflicts of interest,” they did not tell them of their work advising disability insurers on how to handle claimants with ME/CFS.

Patients and advocates have raised these and other legitimate concerns, in every possible academic, scientific and popular forum. This effort has been framed by the investigators, The Lancet and the Science Media Centre as a vicious and anti-scientific “campaign” against PACE. The news reports adopted this viewpoint and utterly failed to examine the scientific mistakes at the root of patients’ complaints.

Moreover, the reports did not present any independent evidence of the purported threats, other than claims made by the researchers. There were no statements from law enforcement authorities confirming the claims. No mention of any arrests made or charges having been filed. And little information from actual patients, much less these extremist, dangerous patients who supposedly hated psychiatry [see correction below]. In short, these news reports failed to pass any reasonable test of independent judgment and editorial skepticism.

Despite their questionable scientific methods and unreliable results, the PACE authors have widespread support among the UK medical and academic establishment. So does the Science Media Centre. Media reports, including last week’s Nature commentary, have presented without question the PACE authors’ perspective on patient response to the study. The reality is that patients have been protesting a study they know to be deeply flawed. Sometimes they have protested very, very loudly. That’s what people do when they are desperate for help, and no one is listening. To call it harassment is disgraceful.

Update 2/3/16: After reading some of the comments, I thought it was important to make clear that I don’t doubt the PACE investigators and some of their colleagues might have received very raw and nasty e-mails or phone calls. Perhaps some of these felt threatening, and perhaps they called in the police. (I’ve worked as a reporter for many years and have also received many, many raw and nasty e-mails, so I know it’s not enjoyable—but pissing people off is also part of the job.) The news accounts, however, provided no independent verification of the investigators’ charges. And the point is that, whether or not they have been the recipient of some unpleasant communications, the investigators have repeatedly used these claims to justify blocking legitimate inquiry into the PACE trial.

Correction: I reviewed the three major articles I linked to, not every single article about the issue, so my description of the coverage applies to those three. I originally wrote that the articles contained “no” interviews with actual patients. However, the Sunday Times article did include a short interview with one ME/CFS patient–a convicted child-molester who blamed his crime on fall-out from his illness. I apologize for the mistake, although I leave it to readers to decide if interviewing this person represented a sincere effort on the reporter’s part to present patients’ legitimate concerns.

I also wrote that the articles included no statements from law enforcement confirming the claims of threats. The Guardian article contained this sentence: “According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.” This statement is vague, anonymous and impossible to verify with anyone in particular, so I don’t view it as an authoritative statement from law enforcement.

Comments on this entry are closed.

  • tencents

    Ellen, would you like to declare your conflicts of interest ?

    you’re using the same techniques as before – repeated focus on alleged harassment by a tiny minority – instead of addressing the main issue – the anonymous PACE data should be released, to allow independent assessment.

    the PACE follow-up at 3 years showed NO SIGNIFICANT BENEFIT for the treatment arms vs control. it’s time for you to contemplate that …

    (and please, no sophistic arguments – the methodology & interpretation are questionable, and it was a NULL RESULT)

  • Valentijn

    You cried harassment when people tried to speak with you on equal terms on a forum. The did not abuse you. They disagreed with you, and you were so incensed that you refused to support any of your claims until they provided suitable academic credentials.

    I don’t understand why you are so eager to paint the ME community as haters of psychiatry, especially when you are a member of that community. Based on your other behavior (slamming other science-based ME advocates when they receive accolades), I can only assume that your primary goal is not furthering ME/CFS advocacy, but solely to receive credit for any progress which happens. Attacking progress made by others, however, is not going to be productive for you or anyone else.

  • tencents

    NULL RESULT.

  • Valentijn

    Yes, there’s no good excuse for every ME/CFS article about new research to include a prominent paragraph suggesting that the patients are prove to violence and hate psychiatry. Even aside from the lack of foundation for such claims (published research has shown ME/CFS patients are not biased against psychiatry), it’s completely irrelevant to the stories, or to the illness.

    I’m sure that completely inexcusable threats of violence have been made against doctors researching and treating every common illness … yet those doctors and their media resources don’t reveal their latest findings by starting with a tale of the doctor being threatened 5 years ago, accompanied by a ridiculous hyperbole suggesting that the patients are more dangerous than a war zone, and a sympathetic photo of the researcher making the claims.

    These are unacceptable tactics which distract from the science, further marginalize patients, and provide a pretext for withholding anonymous trial data which the public has paid dearly for. This behavior should not be tolerated from the Science Media Centre, nor the media, nor any scientist who wishes to be taken seriously.

  • tencents

    Ellen, i’m not trying to

    why do you repeatedly highlight the alleged ‘harassment’ by a tiny minority.
    it’s off topic.

  • Sasha

    I think this article (and discussion) makes it clear how important it is that the views of the majority of patients – who are rational, civilised people – are heard.

    ME/CFS patient Clark Ellis is asking us all to write to our UK charities. He wants us to tell them that over 11,000 patients and others have signed the #MEAction petition asking for the release of the PACE data for independent analysis: and he wants the charities to convey our wishes to Queen Mary University of London and ask them to release the PACE data to the patient who has requested it under the Freedom of Information Act and abandon their appeal against the UK Information Commissioner’s decision.

    This is who we really are: reasonable people asking for reasonable things, together.

    Getting PACE’s data released is crucial. Take action here:

    https://autodidactauthor.wordpress.com/2016/02/01/pace-trials-forbidden-fruit-part-3-charities-must-echo-patient-calls-for-data-release/

  • Ellen Goudsmit

    Thank you. The issue is that the community is not using strong arguments. Important in research are the main outcome measures, (indicate low means at FU), I can’t work out how many drop-outs there were as many tables have a different number of participants in the analyses and there was no explanation so I could not include the trial in a meta-analysis (cf Researchgate), some tests were inappropriate eg. walking test? (Snell or VanNess, but whoever noted that, you can’t tell anything from one test, you have to repeat after 24 hours), failure to assess any symptom other than tiredness and sleep, so that’s unsatisfactory, and how many remained on benefits. What I’m seeing are requests, often for info that’s not really important and results that don’t tell you a lot. So I asked for raw data for main outcome measures. Their statisticians could do the tests so no confidentiality issue. It stays in-house. Refused. It’s the ‘group think’ where people focus on data that are not that helpful that bothers me. Forget the walking test. Look at the main outcome measures. How many, if any, ended up in the normal range? If you are going to define improvement, then I’d expect people to have significantly reduced scores. If you are 38 and have a score on the PF subscale of 58 at FU, you are as healthy as a 75 year old. That’s not a significant improvement in my books. It’s being bed bound for 24 hours, then being bedbound for 22 hours. If you’re talking recovery, I’d expect all to be in the normal range on the main outcome measures.
    Sadly, people who are not open minded prefer to insinuate I have motives which are not helpful and that means, if bystanders don’t act to shut them up, I can only see discussion if I want to. Like now. I don’t get emails anymore. (You don’t have to subject yourself to insults e.g Valentijn. See no bullying, hear no bullying…) But always happy to communicate people who realise I’m trying to do my best for people with ME.
    I am pretty sure that when St Mary’s get requests asking for not terribly significant data, they suspect it comes from people who don’t understand what UK science accepts and what is a request for potentially important but missing info. When I read the requests I see people asking for things that are odd. Eg. bimodal scores, which aren’t used anymore (my doing based on work with Dr Stouten). It’s a sign people are not familiar with the whole trial, with ME, and the REAL flaws. If you can’t work out why there are differences in N, Houston, you have a problem. But no one else seems to have noticed that.
    Requests for main outcome measures re valid. But when I read about the walking tests I feel there might be layman’s thinking and group think going on. It’s just not going to tell us much. Nothing really. It’s not the right test for an illness like ME. Actigraphy more important and that was missing. On purpose. When it’s used, except for 7 patients, it sows no significant increases in activity i.e. people did not follow the GET protocol. Any improvement is not due to an increase in activity. That’s significant in my books. But no sensible scientist subjects him or herself to personal and nasty posts. Not unless in a certain mood. Signing off.

  • Andy Kokuu McLellan

    I agree, Ellen. We need to leave the requests to people who can understand the data and let them lead. David is one such person, as is James Coyne. I can analyse data and understand statistics but am not an expert on medical research.

    Personally, I think the walking data is useful to have in additions to the subjective outcomes and how the parameters for improvement were changed. And, yes, a good explanation of what the scores actually represent in terms of changed ability to do things. The fact that the walking data is reported as still showing the participants to be as disabled as those with heart failure even after CBT/GET seems important to note. As a non-repeated measure it is certainly not the best indicator of recovery, though, and self-reporting on other activities (time out of bed, cooking etc) would be much more helpful.

    Thank you for your work, Ellen. Sorry you have been so sidelined.

  • Ellen Goudsmit

    As a referee and examiner (stopped writing exam questions though), I would say Dr Tuller needs to review and tweak things here and there.

  • Rob Parsons

    Do you have a more precise reference? I don’t know how I could begin to trawl the Lancet looking for something like that. And – a picture of one? I’ve had more death threats than that, and I’m not even in the public eye. Can I suggest that the PACE advocates protest too much?

  • pinklil

    Quite so Mary.

  • Nix 77

    Since when have the Lancet, Independent, Guardian and BMJ published accurate material about ME, or about the patients?

  • Ellen Goudsmit

    NB. People want evidence so I spent 1 minute on Google, searching for Wessely and death threats. Quality newspapers and BBC. I’d be cautious about the Sun or a blog but those broadsheets have lawyers. Too many saying the same thing, also about others e.g. a virologist who didn’t find that retrovirus a few years ago. Makes uncomfortable reading. Most emphasize it’s only a minority. Haven’t searched for White and abuse. Just tried to see if there was anything on the net you could find in a minute.

  • ME/CFS patients are too sick to go after all the researchers who haven’t done anything useful in, say, the last 27 years I’ve been sick. I rarely leave the house!

    I used to be a computational physicist doing fusion research at Princeton’s prestigious Plasma Physics Lab. I know that scientific data is always subject to review by other scientists – that’s the point of reporting your findings! A consensus eventually arises – scientists are delighted to have their data found wrong, and that finding help find the right interpretation.

    For example, we were thrilled when cold fusion was reported. The excitement of thinking that maybe someone had found a way where we had not, and a bit of envy, and then perusing and discussing the available papers and data and suggesting more experiments – we felt we were all working on the same problem, and we would have supported ANY breakthrough, even if it proved the rest of us were all wasting our time.

    Why? The advancement of science is what drives people to spend their lives doing it.

    When cold fusion turned out to be a bust (this was years ago), we were devastated – and went back to work. But we investigated and thought and did calculations, hoping… The researchers who reported the supposed cold fusion had more help than they knew what to do with.

    Your data is useless if you can’t have other researchers duplicate it, study it, discuss it. It isn’t personal – until you make it so. That’s why it’s science, and not, say, politics. PACE is the cold fusion of our world: it’s fake, and it doesn’t work, and we would have been delighted if it had. People with CFS/ME pushed themselves into crashes trying to get better. We’re not idiots – our lives are tiny, circumscribed, faint echoes of who we used to be, and we certainly get little sympathy – if it worked, we’d be doing it.

  • sgregg

    Ellen – I don’t think anyone here disagrees that you can find quickly find articles about Wessely and harassment in the media. The problem is the lack of corroborating evidence in most (all?) of these articles. They all seem just to take Wessely/Sharpe/White’s word for it that serious, credible threats have been made against them. I have no problem accepting that they get hate mail and nuisance phone calls (which I realise can’t be enjoyable for them) but when they start claiming that there are organised campaigns against them that require them to have phone calls/letters screened for their own safety – well, I think there’s a higher burden of proof that needs to be met. Otherwise it’s too easy for them to misrepresent the occasional crank email or phone call as being something more sinister than it is.

    To be clear – I’m not saying that they aren’t the victims of harassment. But if it’s as bad as they say it is, they need to present a bit of proof to back up these claims. Their failure to do so to date (coupled with the fact that some of the specific incidents they’ve quoted don’t seem anywhere near as serious as they’ve made them out to be) certainly makes it look like they’re playing the martyr as part of a smokescreen strategy.

  • “Last week, a commentary in Nature about the debate over data-sharing in science made some excellent points.”

    Actually, it did not.

    “Unfortunately, the authors lumped “hard-line opponents” of research into chronic fatigue syndrome with those who question climate change …”

    Calling this the ‘unfortunate’ thing about the article misses the point.

    Scientists and activists promoting the orthodox line on climate have expended years of effort denigrating their critics and skeptics. This has been done for so long a time and via mass media channels that an easy and safe way to smear a group of people is to simply compare them to climate skeptics.

    Patients and CFS researchers should look at themselves in the mirror if they are curious to know how climate skeptics and doubters look like.

    Climate skeptics filed numerous FOI requests for temperature data at the University of East Anglia after polite emails failed to produce results. The FOI requests were denied first on grounds that the search criteria was too broad, and then denied under a clause that the number of requested items was greater than 10 when a list was submitted, and then classified as a co-ordinated ‘attack’ when the volunteers submitted requests for same list broken down into 10 items each. Eventually the university found success with the ‘vexatious’ request clause and managed to refuse further requests.

    If online climate skeptics have been framed as being ‘attackers’ of scientists with data requests it is on the basis of episodes like these. The parallels with requests for data from PACE, should be obvious.

    At an Australian university, panic was whipped up that death threats were received by climate academics from skeptics. Scientists were even moved to different buildings on campues based on these alleged threats. One reported incident involved a skeptic telling a scientist about his new gun license and how he was a ‘good sniper’. It later turned out the conversation had occurred a year earlier, and took place between a participant in a kangaroo culling program and a scientist, who came and spoke to him (rather than the other way around) and had asked him about his culling license.

    I would urge CFS researchers and scientists to resist the temptation to follow in well-worn tracks and from reflexively denigrating critics of climate science/activism, many of whom are scientists themselves. They would be surprised to see the parallels between the smear-by-association, demonization and discrediting tactics followed by credentialed academic scientists in different fields, in dealing with their critics. In fact, people like Lewandowsky apply these tactics across multiple disciplines in his case across psychology and climate change.

  • Heath

    Much has been discussed about the subjective, alleged harassment and death threats the PACE authors and proponents has received from the ME/CFS community.

    As Mr Tuller rightfully says, since these allegations first aired, no direct evidence of their existence has ever come to light.

    What I find interesting is why anyone outside the ME/CFS community, or those just whom are unaware, if these accusations were indeed true, why would a disabled person say such things to researchers whom are supposedly treating and researching them? What would compel someone to harass or even issue a death threat?

    And since the accusers pertain to research and treat ME/CFS patients, who they believe suffer with a Neurotic, mental illness, surely smearing a patient community with these allegations is irresponsible and dangerous, especially directly to the media? Why would ME/CFS researchers not defend their patients, rather than taint the community as a whole?

    How far would one have to be ignored, neglected, provoked or attacked to defend oneself which such ferocity?

    We know there is evidence that ME/CFS can be fatal – granted not in great numbers, maybe due to a lack of reporting, diagnosis, unread knowledge, or physicians not connecting late-stage comorbidities (such as heart failure and cancers, both of which are common killers of those with ME/CFS). But ME/CFS has indeed been designated as a cause of death to many poor souls, thanks to a few brave pathologists.

    So, ME/CFS is objectively fatal, yet this isn’t universally accepted, reported or advised by medical professionals and rarely by the media, and when it is, it’s completely ignored and never reported nationally or internationally. Then, is not a case of medical negligence due to a direct lack of necessary research into prevention and treatment which has been unacceptably frugal, and perhaps purposeful, by various governments?

    Could this medical negligence not only be a threat of death, but a form of negligent manslaughter? As a physician or ‘expert’, you maybe aware ME/CFS kills but not only chose to do nothing, you don’t even inform the patient of the true prognosis?

    The knowledge is there that a disease which kills, disables, and affects millions of people, globally, and the medical services and governments chose to not only do nothing, but maintain the disease is something else entirely, contradicting the evidence that it can be fatal?

    But not only that, researchers which claim to treat ME/CFS patients then use subjective, unsubstantiated allegations of harassment and death threats, which if have occurred, would be in the minority by very few desperate, dying patients, or their loved ones due to the medical negligence and plain ignorance.

    I put it that ME/CFS patients do not suffer with idle threats of death, but a probability of death everyday, and no physician or medical authority have the honesty to advise and treat patients accordingly – in direct conflict to their Hippocratic Oath.

    And the people allowing such a demise to occur continue to denigrate and smear sufferers fighting for their lives.

    There’s a saying amongst whistle-blowers that suggests people with inconvenient truths are ‘Suicided’. That’s their untimely death is manipulated, coerced or corrupt, whilst making it look accidental.

    What seems to be the case is the ME/CFS community are so filled with hopelessness at times due to the meddlesome actions of those in positions of power and the evident neglect, it could be said that sufferers that can’t go on have also been ‘suicided’ – manipulated and provoked enough into ended their plight, not only due to their pain and suffering, but due to the medical neglect and hopelessness.

    As patients, we are walking evidence of disease which is not screened or tested for, and any positive test results are played down and are rarely connected to ME/CFS, even when the evidence says it is. The physicians and ‘experts’ chose to not read the evidence.

    It’s also worth noting, the neglect, ignorance and denigration of a patient population isn’t a recent occurrence, but has existed since the conception of the inaccurate term “CFS” in 1988 – over a generation ago. Why did a redefinition and name-change suddenly change the landscape of the classified Neurological disease, Myalgic Encephalomyelitis? I leave that question with you…

    So this baiting and aggravation by PACE trial proponents serves a purpose, and in fact, the disease is only part of our very own probability of death. They have conversely painted themselves as the hapless victims, when surely a disabled community, whom have lost everything, would usually be defined as the victims of this story?

    By heaping hopelessness, neglect and ignorance on patients, for over a generation, whilst compelling this with unsubstantiated, serious allegations, which can clearly smear disabled patients in the eyes of the media and public, the PACE proponents are perhaps looking at a reflection when they consider threats of death.

    They are fully aware our own probability of death is much more certain, and not only do little to prevent it, I feel they incite it.

  • sgregg

    To be fair Valentijn, that isn’t the full picture. She got pulled further and further into a discussion that she made clear that she didn’t particularly want to be part of, and when she tried to leave the debate other participants started cross posting her comments from social media so they could continue disagreeing with her in her absence. I don’t know whether that counts as harassment or abuse, but I can understand Ellen feeling upset and victimised and deciding to leave the forum.

  • sgregg

    I don’t know the full details, but there was a harassment case over 10 years ago now where a handful of ME activists were accused of harassing other ME campaigners. I know the Police were involved (and that the accused individuals denied the allegations, claiming that they were actually the victims of harassment and trumped-up claims from the people who’d made the complaints) but I don’t know how the case ended. I think this is the incident that Ellen is referring to.

    I appreciate this must have been an unpleasant experience for Ellen, but I don’t think that this incident really has anything to do with what David Tuller is talking about in this article as it didn’t involve death threats or any organised campaign of intimidation of researchers (well, as far as I’m aware it didn’t). Apart from demonstrating that a few ME activists are capable of overstepping
    the line of acceptable behaviour, it’s probably not useful to dwell on it as part of this discussion.

  • Ellen Goudsmit

    What evidence do you require? BTW, you are implying that ME victims like Dr S and myself are also exaggerating etc. We, the ME community, rely on evidence from averages, not individual statements from participants in GET to indicate, using good tests, that they got worse. If, as loads of surveys suggest, a significant proportion get worse with GET, we take that on the basis that it’s a consistent result from surveys. We don’t ask for extra evidence. Here we have the same. Consistent reports of the same thing happening to a range of people, some psychiatrists, some not, some who regard ME as psychosomatic, some who regard it as neurological. What do they have in common? They all said or wrote something that the activist didn’t like. It is what it is. You can accept it or not. It wasn’t just Wessely, had you read anything. PLEASE, don’t misrepresent info. Valentijn does that. Be critical re everything. It’s so easy to accuse people of writing things they didn’t. You can stand by and watch good people being insulted etc; or do the right thing and tell the intolerant so-so’s that this is not mature, helpful and the rest.
    This discussion has shown up exactly what is wrong. A ME patient who wants to get better appreciates input from a knowledgeable expert and would be miffed if someone were to accuse them of dodgy motives, based on little info or misrepresentation. That’s how it was before CFS and the broader concept of ME which included people with psychological issues. More than 300 patients and there was no hostility, even though we were dismissed as hysterics. Some ended up in solitary confinement. Before Wessely, we didn’t have it easy. But the genuine patients recognised I knew my stuff. So this discussion is interesting as a few, a few, clearly don’t. And don’t value the input of a specialist. Others can stand by but that is not the way to get out of a mess.
    Spend a minute on google, and you will get a picture from a variety of people what they had to put up with.

  • Danny Scippio

    In this Blog post DT has perhaps oversimplified the problem of harassment in the history of ME/CFS research and advocacy in the UK, and in doing so fails to precisely target the wilful misrepresentation of
    ME/CFS patients by the PACE authors via the tactics of their PR agency.

    It may be unpalatable but the evidence offered by Ellen Goudsmith is pertinent and it shouldn’t be deprecated either because the messenger doesn’t deliver it well (ME/CFS patients are hardly known for
    consistent good articulation) or it doesn’t chime with the prevailing view. It is matter of fact, that harassment of at least one advocate and of one researcher by individuals who acted in some degree of co-ordination, has occurred. This however is not what was reported in the UK media in any clear sense, rather a number of separate complaints were dishonestly woven into a single narrative which relates the existence of a highly motivated widespread campaign against any researcher who has ever been interested in ME/CFS. This narrative is not a simple lie, like all good propaganda it is founded on a kernel of truth – harassment from people with an anti PACE agenda did happen. The narrative is also well delivered being legalistically protected by assertions that – ‘it is not all patients, just a few bad apples etc’, the dishonesty however is extemporised into – ‘of course the good patients all support our work’. The PACE narrative does not allow that a ‘good patient’ could be anyone who thinks that BPS is a bust approach or that PACE was pretty crappy way to blow £5million, so that by implication any patient who criticises PACE or any one of its 26 authors, is by definition continuing the harassment
    of the ‘small group’ who were indeed guilty of if nothing else, obnoxious behaviour, at some point in the past.

    If the self serving PACE narrative is to be exposed, the scale of harassment that did occur needs to be demonstrated, the claims of harassment need to be approached both respectfully and sceptically, a
    challenge to ‘put up or shut up’ needs to apply to events that took place years ago, needs to be clearly articulated and the perspective bias of reporting of both the BBC and the Guardian newspaper over the harassment issue needs to be challenged (other outlets are largely beyond redemption). DT has extended the opportunities for these things to happen, but a more nuanced appreciation of the history is needed if QMUL, the PACE authors and the SMC are to have their propaganda exposed for what it is.

  • Citygirlme

    I think that it would be fair to say that the people who harrassed yourself and Dr Shepherd (and who also harassed other patients such as the moderators of the ME ActionUK group) were not people with a diagnosis of ME. That’s important to point out in all fairness if I am correct.

  • Danny Scippio

    Ellen, media lawyers exist not only as moderators eliminating the unsupportable from newspaper pages, they also exist as attack dogs. Taking a case against a major media outlet is beyond most people and while celebs can claim major reputational damages, that doesn’t apply to the little people so NWNF deals with lawyers aren’t available. You are quite right about the ‘it’s only a minority’ get out clause, but that doesn’t allay the locus of blame anymore than pointing out the number of Jihadis in the UK is tiny in anyway stops the consitent presentation of all Muslims being responsible for the collapse of Western civilisation. The 2011 harrassment reports were little more than churnalism by journalists who were either too pressured, too lazy or too biased to put balanced articles together. At some point the principle of put up or shut up hase to come into play with any serious allegation. Either there’s a police report or criminal trial for every incident, otherwise in the real world things have to move on. I hope that DT will be able to make use of the evidence you have – that doesn’t mean other claims of harassment stand up.

  • Citygirlme

    I find it very hard to believe (as per the Guardian report) that a ME patient was responsible for punching a researcher in the street. If this did actually happen why was there not a court case for the assault? Most ME patients don’t know what researchers look like, let alone where to find them and as for actually being well enough to travel to find them “on the street” and actually punch them. This, if it did happen, sounds like a personal matter with a long story and not related to the wider community, the death threats stories or the typical actions of patients.

  • Citygirlme

    Ellen, just to make things crystal clear (and not intending to upset you further). Would you please confirm that the person who harassed you and was the subject of the police action, was not a ME patient. I think that this is an important distinction to make on a public forum.

  • Citygirlme

    Ellen, I heard Prof Wessely on Radio 4 when he gave an example of a “death threat” that had been sent to him. This turned out to be a Bob Dylan song that had been sent to him. No one at Radio 4 (Today program) had bothered to Google the words or do any further checks. That is why we need to examine the evidence of even sources that would normally be considered impeccable. Your own circumstances I do sympathise with and am in no way trying to trivialise.

  • sgregg

    Ellen – to repeat what i wrote in my previous message – I am not saying that they aren’t victims of harassment. I accept that they get hate mail/crank calls/etc and that this can’t be enjoyable for them. I accept there are some ME activists who think its acceptable to harass researchers – whether biological or BPS – who publish something they don’t like.

    But Wessely et al have gone much further than this with their claims. They’ve claimed that there is an organised campaign against them which has threatened them with physical harm. They claim that the police are aware of these claims and are taking them seriously. This is obviously a substantially more serious claim to make, both in terms of the scale and severity of the intimidating behaviour. It doesn’t seem unreasonable to me – and as a scientist I would hope you would agree with this – that there should be some evidence to back up these serious claims of organised criminal activity. But as far as I can tell (and I accept that I may have missed something) there is no evidence currently in the public domain that supports these claims. They’ve been asked to provide some, but have repeatedly declined to do so. Now that doesn’t mean the evidence doesn’t exist of course, but you have to ask why they don’t produce something when it would do such an effective job of bolstering their claims and silencing their critics.

    An arrest, a prosecution, a conviction, a crime reference number, a statement from the Police confirming their involvement – any of these could corroborate the claims that they’ve made. You’ve said elsewhere in this thread that you have evidence of the harassment you experienced and that you’re willing to make it available to other people. Well, that’s more than Sir Simon has ever done.

  • Valentijn

    Right. She wanted to make her statements, have them accepted as indisputable fact, and walk away, rather than engage in discourse with other people. That isn’t how public forums work, ever. Especially when making controversial statements which contradict everyone else’s experiences.

    And why is it okay for her to then leave that public forum and continue solely with her side (disparaging the forum members) on Twitter where most of them did not have accounts and could not defend themselves or express any disagreement? It’s hard to argue that forum members did something wrong in discussing her Twitter comments which were already discussing the forum comments.

  • Citygirlme

    It would help to make clear that the “ME Activist” I think you may be alluding to here was not a ME patient. My person opinion that calling them a “ME activist” may be going too far for that reason and others.

  • Citygirlme

    what isn’t being made clear is even if the “harassers” even have ME or claim to have ME and what “harassment” is. How do we know there is a “small group” or even a “group” and who these people are and what they do?
    (BTW I am not referring to what happened to you and presumably has stopped and was from one particular source )

  • Dan Wilson

    I’m not sure which position you are taking reference PACE TRAIL. It’s a bit confusing as you seem to take both sides. Are you referencing
    https://web.archive.org/web/20050124134306/http://bmj.bmjjournals.com/cgi/eletters/bmj.38301.587106.63v1#89044

    If not, why don’t you list step by step, your critique of PACE TRAIL?

  • Ellen Goudsmit

    That’s probably because all people who have read what happened in quality papers (which is consistent with what was on the internet at the time) don’t require him to produce a police ref number. To place police ref numbers on the net is unwise. You can see how a few misrepresent what I write, still. The net is a dangerous place. Happy to discuss with people of goodwill when not too busy. like now.

  • Ellen Goudsmit

    The person who was found guilty of harassment (magistrates and appeals court) did not have ME but one of the harassers who I wanted to sue for defamation (and had begun to), was. To be fair. Lawyer not keen because she had no assets.

  • Ellen Goudsmit

    Denial again.

  • Ellen Goudsmit

    Most claimed to have ME or a child with ME.

  • Ellen Goudsmit

    I have. Many times. I’m on the MEA FB page. The last full critique was there. am ill. Can’t keep on repeating . Must pace myself. I noted some basics here.

  • Citygirlme

    In 1989, UK charity ME Action Campaign magazine Interaction carried the results of 1500 professionally conducted questionnaires that had been sent out and some of the responses are provided here.

    Comments of doctors to ME patients:

    “Throw away your crutches – it’s your head that needs them, not your legs”

    “Women of your age imagine aches and pains – are you sure you’re not attention-seeking?”

    “I’m not prepared to do any tests, they cost money”

    “Shut up and sit down”

    “You are a menace to society – a pest. I wish you’d take yourself away from me”

    “You middle class women have nothing else to worry about”

    “Its one of those thing you silly young women get”

    “Hypochondriac, menopausal, you have the audacity to come here and demand treatment for this self-diagnosed illness which does not exist”

    “Stop feeling sorry for yourself – I have patients with real illnesses, patients who are dying from cancer”

    “ME is a malingerer’s meal ticket”

    “Your inability to walk is in your mind”

    “I’m not going to further your career of twenty years of being ill”

    “Nothing at all wrong with this woman – Put her on valium” (to GP from Consultant).”

  • A.B.

    Thanks for the article. I would love to see an article written for the broader public, that examines the validity of the illness model proposed by PACE authors. This illness model is built on the denial of the scientific literature, showing among other things, objectively measurable exertion related abnormalities indicative of an underlying pathology. This illness model is also tied to the conflicts of interest of the authors. They are not promoting the model that best fits the evidence, but the model that best serves special interest groups. After examining the evidence it’s hard avoiding the conclusion that PACE is most likely a modern example of tobacco science.

    “Bad science is being published with exaggerations of its significance and without challenge. This can often only be understood with reference to politics.”
    – James Coyne

  • A.B.

    I also believe that the reason ME/CFS is such a neglected area of research is mainly the consequence of the belief that it’s psychosomatic. Promoting this explanation despite evidence to the contrary has done incalculable harm to patients that find themselves without any effective medial treatment, and little hope of progress. There are some signs that this is finally changing. This is a powerful story that could make a very interesting article, of value for patients, and of interest to the broader public.

  • Danny Scippio

    Denial of what ? You posited a few spoon fed media reports as evidence (quite separately from your own supportable experiences) of ongoing harassment of (some of) the PACE authors. At some point serious allegations have to either result in criminal or civil proceedings or censure by professional bodies or exposure in some other public arena where the evidence is tested for all to see. If that doesn’t happen then allegations remain just that and repeating them does not add veracity. To say this is not to deny anything, it is the only way to fairly distinguish slur from truth.
    Your reply to sregg where you suggest because medical research works on probabilities of the strength of replicated results means that because the same allegations of harassment are repeated over, that this leads to some probablistic evidence on which we must relay, is bordering on the bizarre. The allegations of harassment amount to claims of law breaking and/or personal and/or professional harm – the only probabilities that can reasonably apply are the criminal test of ‘beyond reasonable doubt’ or the ‘balance of probabilites’ that applies in civil cases – but in each case the judgement is made by a jury of the accused’s peers, something which is wholly lacking in the PACE circumstance.

  • Ellen Goudsmit

    Thanks for calling my reasoning as bizarre. How to win friends and influence people. But that doesn’t mean there was not sustained harassment over many years. For others who don’t mind if perhaps one thing I wrote was bizarre, all the docs involved were advised by the MDU. The police also advised. The Defamation Act is for the very rich and the Harassment Act is a joke. (CPS takes people to court but has no contact with the victim to prepare a strategy.) I was in the stand for three hours, twice. They could have chosen a well person, a peer of the realm, a doctor but they chose little old me. Had I known how awful it would be, (I was in relapse for months from the stress), I would have told the CPS to find one of the others to be the witness against X. But the fact the harassment Act wasn’t used re White and Crawley does not mean things didn’t happen. It means our laws re bullying etc are out-of-date and need a review. The MDU decided not to pursue that line. Too expensive perhaps?
    This is the point. My request was for one thing, to be analysed in house, so no confidentiality issue, there was no history of me harassing White, and they still denied me. Which does make you wonder what they don’t want me to know. Given I wanted to know one thing, one suspects the results were probably what I guessed. Virtually no one was in the normal range for the two outcome measures. And then the stuff about harassment is a gift to deny FOI requests. The confidentiality argument is not I find compelling. What I asked them to do would take 30 min max. They really don’t want anyone to know % in the normal range. I know the trial and I know what is acceptable in UK science. Some requests came from people who are not so familiar and were asking for data like the bimodal scores, which would not add to our knowledge. That does make you wonder about motives.

  • Ken

    @Ellen You do realize that a great number of people reading these comments reside outside the UK and do not understand what you’re posting on here since they are not aware from a historical perspective your references to past events nor aware regarding the relationship of past UK research, UK ME patients & researchers, patient org. etc.?

    May I make a suggestion. Best to stay on one current topic on each post & style your comments with points with supporting evidence not innuendos for those of us unfamiliar with the issues.

    Otherwise, your comments come across as ramblings of disjointed thoughts on various topics amounting to gibberish

    thx

  • Ellen Goudsmit

    I don’t do innuendoes. You’re right about one thing. Many posts and blogs by Americans and others ouside GB haven’t got a clue what happened in the UK, but judge anyway. The accusations etc reflect that. When someone tries to explain, a very sick person resting in front of a computer, you don’t look things up, but you judge. You want an essay. Sorry. Can’t do. Those who value a little clarification have enough.

  • Ellen Goudsmit

    Did you audit everyone to check large numbers don’t understand? Maybe useful point. Perhaps Tuller is not aware of historical perspectives etc and thus his blog is not helpful? I tried to stay on current topic. Is it you who can’t follow? Don’t answer. Too ill for this.

  • sgregg

    Again, as someone who followed that discussion as it unfolded I don’t think that’s a fair summary of Ellen’s behaviour. But I also think that far too many of the comments on David’s post have been off-subject, so I’ll say I disagree with you and leave it there…

    Apologies if this comes across as me walking away rather than engaging in discourse. 🙂

  • Danny, Perhaps I mis-read Tuller’sarticle, I took from it that the SMC had orchestrated the never-ending cascade of accusations against the patient community, based on these alleged threats. I
    did not think he was denying their existence altogether. But I cannot quickly and easily absorb every detail of articles I read, I do have cognitive probs absorbing information (like many of us).

    FWIW, I have great respect for Ellen’s work on ME, she fully understands and highlights the crucial difference between Ramsay ME and CFS and chronic fatigue – this is a hugely important
    distinction in this saga (and of course there are so many embedded flaws in the PACE trial itself). I, of course, have sympathy if Ellen has been personally harassed in the past. That’s horrible for her. And I do not doubt her word. However, I have observed that she can be spiky on forums and has a tendency to alienate others by speaking in riddles, and unless you already know what she’s talking about, and have access to the facts yourself – which I don’t – it can be difficult to glean any meaning.

    I also believe Dr Shepherd of MEA – I trust him implicitly – when he has said that he has also had harassment in past, but he immediately acknowledges that 1) pwME are wholly justified in feeling angry at neglect/lack of proper research 2) it is a tiny, tiny minority who have harassed 3) and it is probably not people with ME, but rather with mental illness who have identified themselves as having ME. Crucially though, Dr Shepherd did not parade himself in the press, dramatising these threats. He dealt with them, I recall him saying, through official channels.

    I have no idea if Simon W (who defends PACE’s elegance and beauty) has had threats, one would assume he would not truly invent this – but he has certainly milked the media for all it is worth. You
    could not open a Sunday broadsheet in late summer 2011 without Simon being paraded, telling his side of the story. I don’t recall any balance or context to these much reported threats (ie that he has been, in the most cavalier and unchecked fashion, psychologising a neuroimmune illness for years, creating utter despair amongst pwME wherever he goes, conflating ME with the ‘chronic fatigue syndrome’ that he treats (apparently with success). And it is kind of odd, is it not, that
    he would encourage other researchers to get into CFS research when he has himself been so threatened? Sounding very relaxed in a BMJ podcast in 2010, post-XMRV, he says: ‘Other disciplines should get more involved because CFS is under-researched … and you’d be surprised to learn is actually a very enjoyable and very rewarding area of research.’

    Many of us have lost years we can never regain were we cured tomorrow (I certainly have). Alleged threats and harassment of researchers should be investigated, but not repeatedly used as a barbed wire-wrapped stick to beat pwME to a pulp. The charade of PACE, and this cult of Wessely and the other jokers as experts on ME has to stop. We urgently need decent biomedical research funded. These psychiatrists have to retire from ME, before they cause any more harm with their GET and CBT obsessions. The neuroimmune illness ME is not their domain. It’s really that simple.

    One last thing, while I broadly agree with you, Danny, when you describe ME/CFS community as ‘hardly known for consistent good articulation’, I was not sure if you were being sympathetic or
    sardonic. I think if you took any patient population you would find that not every single person is beautifully articulate all of the time – this is not confined to pwME. And many pwME have hellish brain fog, and added to the sheer stress of how they have been treated, may not always feel like a Mastermind contestant when replying on forums.

    Oh, and I wish to make it doubly clear – so that I don’t end up in the Sunday Times, the subject of an Aaronovitch piece, who knows (!) – that I would never condone ugly threats to anyone. But the way the UK media has jumped on these threats is beyond a circus. And beyond contempt. Where is the curiosity for truth – why are these London health editors so lacking in basic journalistic skills when they write on ME? David Tuller is right, there has for sure been an orchestrated media campaign against patients with this illness. It seems undeniable.

    In 1983, I was a 19 yr old student, coping with a catastrophe – severe ME, an illness I had never heard of, had punched into my life after an enterovirus. The illness was certainly poorly understood but there was generally compassion in the media (aside from the oft-quoted tabloid ‘yuppie flu’ label). Now, in 2016, 33 years later, I am 52 yrs old, still ill, and I am trashed, I’m sure of it, in some quarters as a militant, a hardliner, simply because I stand up against the tyranny of these psychiatrists. You couldn’t make it up.

  • sgregg

    But the point is that it’s not at all clear that the reporters from the quality papers that you refer to have seen any evidence either – it looks as if they’re just taking Wessely, Crawley and White at their word.

    For example – the 2013 Michael Hanlon article in the Sunday Times claimed that there was a specialist unit of the Metropolitan Police that was monitoring the threat to CFS researchers, and that they had compiled a list of 80 ‘dangerous’ extremists. But the article also makes clear that this information *didn’t* come from the Police, as they refused to provide any comment. So where did Hanlon get this inside information? Well, everybody else he quoted in the article has connections to the Science Media Centre…

  • Ellen Goudsmit

    You forget that there are witnesses and multiple victims. Perhaps not everything in the press is correct. But they have all reported the same campaign. It happened. And now White et al are using it. And talking about it at meetings. Why shouldn’t they? They tend to note that it’s a small group. We all know that whoever they are have issues beside ME, if they have it at all. Psychs are sympathetic to people with psychological issues and tolerate a lot more. Perhaps some shouldn’t have.

  • Ellen Goudsmit

    Just take care with all sources of info. The press may be incomplete and biased but then, don’t assume that Mr. Tuller is different. I’ve seen unreliable info and I’m disappointed he is not correcting it. Just because he’s critical of the PACE trial does not mean he’s checked all his facts. anyway, it’s a little elate for all this. We have son of PACE to deal with soon.

  • GQ

    One needs to examine very closely the PACE researchers unfounded claims (lies) as suggested by David Tuller. Due to their extensive training in psychiatry they have been able to effectively manipulate the minds of many people over the last two decades until now.

    1. The PACE researchers and Simon Wessely via the Science Media Centre have tried to deliberately obfuscate ME/CFS patients genuine scientific criticism of the PACE trial with animal rights activism.

    http://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/

    Whatever one’s views on animal rights activism this false narrative needs to be examined. In animal rights activism it is agreed that animals are caused pain and suffering and injuries and death in the experiments for the ultimate benefit of developing treatments for humans.

    Q. Why would patients protest so vigorously against the PACE trial given these PACE PIs are doctors supposedly researching “treatments” that help their human subjects/patients and no-one should be harmed as in the animal testing example?

    Perhaps because the PACE researchers have caused significant harms and injuries to ME/CFS patients as documented by the charity MEA. This would be in direct contravention of all ethical research and the Hippocratic oath.

    http://www.meassociation.org.uk/2015/05/23959/

    2. The PACE researchers and Peter White via the Science Media Centre have tried to deliberately obfuscate ME/CFS patients criticism of the PACE trial with tobacco research and climate change denialism.

    “ Orchestrated and well-funded harassment campaigns against researchers working in climate change and tobacco control are well documented”

    With these two examples in the Nature article they claim those are well funded activism. These two examples are very relevant in this case but not for the spurious reasons given by them.

    Q. Which funders with deep pockets to fund this fraudulent research could be operating here?

    Obviously the disability insurance industry (both government and private) would benefit from the PACE trial. Therefore we need to ask – did any of the PACE PIs have such links with these vested interests?

    All three of the PACE PIs had undisclosed conflicts of interests and worked for both private insurers and government (DWP).

    The DWP funded the PACE trial which was unprecedented for a medical trial.

    http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/

    3. The PACE PIs claim they have been harassed but have provided no evidence whatsoever to substantiate their claims as made clear by Tuller.

    Q. Whilst acknowledging it might be unfair and churlish to examine it, could the PACE researchers themselves be responsible for any of these problems.

    The PACE PIs could be primarily responsible as they claim falsely that ME/CFS is not neurological but mental. As stated by Tuller and others they have widened the criteria to include mentally ill patients within the neuroimmune category of ME/CFS since their direct involvement in the 1980s. Therefore it may well be the case there might an isolated incident of harassment given the millions ill with this condition. However the PIs deliberately widened the illnesses criteria to include mentally ill patients. They have then exploited this issue of harassment to the full extent possible to prevent analysis of their “research”.

    Please note this is not meant to denigrate or equate mental health issues with harassment but that it could more likely occur if mental health issues are present.

    Therefore the PACE researchers imaginative claims need to be examined more closely and skeptically given their significant financial interests are being exposed.