Trial by Error: The Science Media Centre’s Desperate Efforts to Defend PACE

By David Tuller, DrPH

This week, the Journal of Health Psychology published a special issue containing a raft of commentaries on the PACE trial. Most of them slammed the study for its many, many unacceptable flaws. Not surprisingly, Sir Simon Wessely’s lackeys at the Science Media Centre immediately posted three comments from “experts” lauding the trial and criticizing the JHP commentaries. I thought it might be helpful to deconstruct these rather pathetic efforts at defending the indefensible.

I’ve posted all three statements below, followed by my comments. I decided to keep them relatively brief, although I could have gone on much longer.

**********

Prof. Malcolm Macleod, Professor of Neurology and Translational Neuroscience, University of Edinburgh, said:

“The PACE trial, while not perfect, provides far and away the best evidence for the effectiveness of any intervention for chronic fatigue; and certainly is more robust than any of the other research cited. Reading the criticisms, I was struck by how little actual meat there is in them; and wondered where some of the authors came from. In fact, one of them lists as an institution a research centre (Soerabaja Research Center) which only seems to exist as an affiliation on papers he wrote criticising the PACE trial.

“Their main criticisms seem to revolve around the primary outcome was changed halfway through the trial: there are lots of reasons this can happen, some justifiable and others not; the main think is whether it was done without knowledge of the outcomes already accumulated in the trial and before data lock – which is what was done here.

“So I don’t think there is really a story here, apart from a group of authors, some of doubtful provenance, kicking up dust about a study which has a few minor wrinkles (as all do) but still provides information reliable enough to shape practice. If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”

Professor Macleod’s comments reflect a lack of understanding of both the illness itself and the fatal flaws of the PACE study. In his first sentence, he refers to “chronic fatigue.” As I and others have noted about 7 million times, “chronic fatigue” is a symptom of a great many illnesses; “chronic fatigue syndrome,” or “myalgic encephalomyelitis,” or ME/CFS or CFS/ME, or “systemic exertion intolerance disease,” is a specific disease entity.

Although there is still no universally accepted case definition, calling it “chronic fatigue” is a clear indication that Professor Macleod does not have a firm grasp on what he is talking about. The same could be said for the Science Media Centre’s failure to correct this phrasing. If they can’t even properly cite the illness in question, how can anything they claim about it be viewed as authoritative?

Professor Macleod does not engage in any substantive discussion about the criticisms outlined in the JHP commentaries. Instead, like other PACE defenders, he chooses to insult the authors. He notes that he “wondered where some of the authors came from” and suggests that some are of “doubtful provenance,” whatever that means. If he is still wondering who the commentary authors are, I can clue him in: They include experts from University College London, Northwestern University, DePaul University, the University of Hertfordshire, Victoria University of Wellington in New Zealand, UC Berkeley (that’s me), and the ME Association. Others are from patients and independent scholars who have proven themselves time and again to be expert researchers with more integrity and honesty than the entire cabal of PACE defenders.

Professor Macleod also states this about the rampant outcome-switching in PACE: “The main think (sic) is whether it was done without knowledge of the outcomes already accumulated in the trial and before data lock – which is what was done here.” This further demonstrates that he does not understand what happened in PACE. There are, in some cases, legitimate reasons to change outcome assessment methods in clinical trials. However, simply deciding mid-trial that you like other outcome methods better is not a legitimate reason—especially when every single change allows the researchers to report more impressive results.

Moreover, in an open label trial with subjective outcomes like PACE, investigators should have a pretty good idea which way things are trending before seeing the actual results. It is specious to assume that the PACE investigators were “without knowledge of the outcomes already accumulated”—they could have easily known things were not going well and relaxed all their outcome measures as a result.

Furthermore, while they obtained oversight committee approval for changing the primary outcome in the 2011 Lancet paper, they apparently received no approval for their overhaul of the definition of “recovery”—at least, no such approval is cited in the 2013 Psychological Medicine paper. And two of the four “recovery” criteria—the physical function and fatigue outcomes—were from post-hoc analyses, so they were obviously not generated before “data lock.” Professor Macleod does not mention this issue; like the PACE authors themselves, he would prefer to ignore the embarrassing fact that 13% of participants were already “recovered” for physical function at baseline.

Finally, it is rich that he brings up the analogy of anti-vaccination campaigners. Given that it was The Lancet that dramatically spurred that movement with its publication of the now-discredited 1998 Andrew Wakefield paper linking autism to vaccines, Professor Macleod’s statement just makes him appear clueless about The Lancet’s egregious behavior in both cases. I hope someone lets him know, sooner rather than later, that he has made a fool of himself.

Lancet editor Richard Horton vigorously defended the Wakefield study for years, just as he has defended PACE. And just as The Lancet finally retracted that paper, it will ultimately have to retract PACE as well.

**********

Dr Neha Issar-Brown, Programme Manager, Population and Systems Medicine at the Medical Research Council (co-funders, along with the National Institute for Health Research, of the PACE trial), said: 

“The Medical Research Council funded and supported the PACE trial after subjecting the research proposal to a robust peer-review process involving experts in the field, as is the case with all our funding decisions.  This included ensuring adherence to standardised trials methodology and design principles. The researchers’ findings were then peer-reviewed before publication in journals. All research evolves by continually re-evaluating existing evidence and looking for new knowledge and we would always welcome high-quality research applications to better understand the underlying disease mechanisms, causes, prevention and treatments for this extremely debilitating condition.”

This statement from the Medical Research Council is not in fact a defense of PACE or a response to any of the criticisms. It is simply a statement of the MRC’s role and an explanation of the process of publication. Yet it is simply false that the PACE trial was conducted according to “standardised trial methodology and design principles,” as the commentaries make abundantly clear. Repeating this claim without engaging critics does not alter the facts.

Moreover, the published studies are so full of flaws that it is absurd to cite the fact that they were peer-reviewed as evidence of their validity and reliability. Any study in which participants could meet outcome thresholds at baseline—and that includes both the 2011 and 2013 papers—should obviously never have passed peer review. What we know about The Lancet publication, in particular, is that the paper went through “endless rounds of peer review,” per editor Horton’s words, yet was simultaneously fast-tracked to publication. Despite my many efforts to extract an explanation from Dr. Horton, he has never bothered to explain how many “endless rounds of peer review” it is possible to complete during a fast-track peer review process.

**********

A spokesperson for University of Oxford said:

“The PACE trial of Chronic Fatigue Syndrome treatments was conducted to the highest scientific standards and scrutiny. This included extensive peer review from the Medical Research Council, ethical approval from a Research Ethics Committee, independent oversight by a Trial Steering Committee and further peer review before publication in high-impact journals such as The Lancet. 

“The allegation that criteria for patient improvement and recovery were changed to increase the reported benefit of some treatments is completely unfounded. As the study authors have repeatedly made clear, the criteria were changed on expert advice and with oversight committee approvals before any of the outcome data was analysed.

“Oxford University considers Professor Sharpe and his colleagues to be highly reputable scientists whose sole aim has been to improve quality of life for patients with ME/CFS. While scientific research should always be open to challenge and debate, this does not justify the unwarranted attacks on professionalism and personal integrity which the PACE trial team have been subjected to.”

Finally, this statement from Oxford’s unnamed “spokesman” is just a jumble of public relations nonsense. It is always suspicious when an institution declines to put a name to a statement—it often means no individual is willing to take responsibility for what is being said. In the case of this utterly vacuous statement, it makes sense that smart communications professionals would not want to have it attributed to them.

Let’s take this paragraph in particular: “The allegation that criteria for patient improvement and recovery were changed to increase the reported benefit of some treatments is completely unfounded. As the study authors have repeatedly made clear, the criteria were changed on expert advice and with oversight committee approvals before any of the outcome data was analysed.”

The claim that the PACE investigators obtained “oversight committee approvals” for the wholesale redefinition of “recovery” is a lie. They did not obtain any committee approvals for this; at least, that’s the only conclusion that can be drawn from the fact that no such approvals were mentioned in the Psychological Medicine paper. It is perplexing to see an official statement from Oxford—presumably vetted by Professor Sharpe and the SMC (or perhaps not)—contain such a blatantly false claim.

Moreover, it is silly to argue that boosting outcomes was not the aim of the PACE investigators. Obviously, it was. The PACE investigators themselves have argued repeatedly that they relaxed outcome measures, particularly for “recovery,” because they decided mid-trial that the original measures were too stringent. So they clearly knew that the changes they made would improve the reported findings. In that sense, it doesn’t really matter whether they examined the data beforehand; if you make it easier to meet outcome measures by lowering your standards, then you obviously know you will achieve better results.

So this Oxford statement is laughable. If these are the best defenses the Science Media Centre can concoct at this stage of the controversy, then PACE is really in big, big trouble.

 

Comments on this entry are closed.

  • Lois Addy

    what is the science media centre? and ho wis it linked to wessley?

  • Scott Simpson

    The tide is turning on the psychobabblers and we can see their desperate and ridiculous – but futile – attempts to protect their careers / reputations / bank accounts. Good work David, doing real journalism exposing fake research(ers).

  • Valentijn

    The Science Media Centre is a perversion, taking money from the public and also funded by the industries and institutions which they promote and defend. SMC’s defense of the indefensible PACE Trial almost certainly results from the money the SMC received from the university of one of the principal PACE investigators. They are a marketing organization, not a independent purveyor of science.

  • Valentijn

    He’s a trustee at the SMC.

  • Lady Shambles

    What a couple of days! I’m now suffering total enervation . It is, admittedly, my default setting and has been so for many a decade, but the thrilling, sometimes hilarious and often bizarre, turbulence of the last few days has my head spinning. I’m so glad we now have healthy people who understand the machinations so well and who are also willing and able to counteract the spin Establishment bodies such as the SMC continue to spew out, because as a patient population we are at the mercy of symptoms which make continued effort in advocacy almost impossible (something which I’d wager the BPS school has relied upon until recently). So thank you David for once again cutting through the nonsense and exposing this chicanery for what it is. It would seem we now have two Davids working to conquer this Goliath… I’m looking forward to a denouement of Biblical proportions 😉

  • Susanna Degaardt

    Thank you for your important work, shedding light on this!

  • Anil van der Zee

    So well written David. You just keep amazing me. I agree that they do make themselves look like fools. Especially Oxford University standing up for Sharpe. The truth will come out. Science will move on but this flawed study will keep haunting them and the abuse of patients world wide that suffered from this CBT/GET model. Who wants that associated to their name??

  • The PACE trial is surely indefensible now.

  • mesupport

    Jose Montoya at Stanford gave the SMC reason for another vacuous press release that was largely ignored in favour of framing the publication in JHP as an academic spat in which James Coyne and George Davy Smith were the main players.
    An attempt at throwing a blanket over the fire that was the main story of a flawed trial that cost over £5 million of UK taxpayers money.

  • clark ellis

    Every “expert” the SMC chose for comment has a known link to the PACE trial or one of the trial’s principle investigators. Blatant.

  • Laura Vitale

    “Oh! What A Tangled Web We Weave When First We Practice To Deceive” should be the title of the PACE trial. Thank you, David Tuller, for elucidating once more, all the reasons why.

  • Peter Trewhitt

    Thank you David for continuing to raise the ongoing deception of the PACE appologists.

    To do bad science once was perhaps forgivable, but this persistent denial and refusal to actually engage in criticism when lives continue to be severely damaged by the establishments endorsement of PACE, when researchers continue to repeat the flawed methodology, is damning.

    The so called Science Media Centre repeatedly has endorsed PACE and belittled patients who criticised this research. They follow the party line of ignoring criticism, rather setting up their own straw dolls to knock down, and to personally attack those that point this out. They are now extending this to their response to academics who point out the egregious failings of PACE.

    However they are now looking more and more foolish.

  • Pingback: Trial by Error: The Science Media Centre’s Desperate Efforts to Defend PACE - VETMEDICS()

  • Olivia Rowe

    This SMC (Science Media Centre) response to JoHP PACE supplement is indeed bafflingly bad.
    They’ve wheeled out a chap who basically splutters ‘Who are these people? I couldn’t be bothered to read their arguments. The PACE authors are good eggs, top notch scientists, don’t you know.’
    And that is as substantial as it gets.

  • Paul Fox

    Please, everyone, use the correct title. You all keep referring to a “Science Media Centre”. Surely, it’s the Pseudoscience Media Centre, or is that the Centre for the Promotion of Quackery?

  • Thank you, David. These people are ruthless in their desire to control their shabby, tedious, harmful, galling narrative – there is no doubt. It is disgusting they are so consistently cavalier with the lives of ME patients. They will say and do anything to protect themselves. I have been in tears of frustration and anger over some of the commentary, it really becomes too much. How do we fight this medical mafia? As an ill population we are not robust enough to sustain the battle – and it is a battle – they made it so. I hope you keep fighting for us.

  • Pingback: Trial by Error: The Science Media Centre’s Desperate Efforts to Defend PACE - Virology()

  • Wendy Boutilier

    Thank you once again David for fighting the battle. I also sent a letter to NICE outlining the lack of one major stakeholder – people with Myalgic Encephalomyelitis which is not the same as Chronic Fatigue Syndrome yet both are equally debilitating. The World Health Organization uses the ICC 2011 and they have told us they have no intention of changing it. NICE likes to combine both but understands neither. I rec’d a very lame reply that they received my submission after the time had closed. It appears that it doesn’t matter who submitted on time when once again they already knew in advance that they had no intention of reviewing their guidelines.
    I’m convinced that the next course of action is to file a class suit against NICE and the psychiatric collaborative. They aren’t listening to any of us and are basically unaccountable to no one. It’s time to make them accountable. Let them see us. It’s a farce to consider this an invisible disease because it’s far from that. Each & every one of us have a haunted look in our eyes. It’s not hard to see how sick we are.

    PS: “While The Lancet ombudsman Dr. Malcolm Molyneux refused to reverse the retraction of exonerated gastroenterologist Dr. Andrew Wakefield’s landmark paper on post-vaccination autism, Dr. Molyneux did acknowledge that the UK General Medical Council’s findings of misconduct against Dr. Wakefield had been overturned.”
    http://www.autisminvestigated.com/the-lancet-dr-andrew-wakefield/

  • Elle See

    Thank you for helping very sick and disabled people with ME/CFS fight the injustices forced on us seemingly without end. I believe this will change one day, and I believe that you will be instrumental in this change.

  • GQ

    There are so many misleading and false statements by the Science Media Centre it is difficult to know where to start.

    The Science Media Centre (SMC) which Professor Sir Simon Wessely is a grandee of, has been manipulating the public perception of ME since its inception and it is continuing as it has always done.
    The SMC has been a mouthpiece and defender for Professor Sir Simon Wessely, Professor Peter White and Professor Michael Sharpe.

    The media coverage of the Journal of Health Psychology special edition was positive and has allowed the PACE Gate scandal to finally be reported on in the UK national media.

    However the SMC has clouded, with its smoke and mirrors, to a large extent the real story in the recent media articles which is the major scientific, medical and financial scandal of the PACE trial and its authors which the Journal of Health Psychology Special Edition was exposing.

    The Science Media Centre has been exposed in the past as providing a mouthpiece for corporate interests and this is now very clear for everyone to see. There is no doubt about the SMC’s purpose. It should not be forgotten the purpose of the PACE trial was for insurers and the DWP to terminate insurance benefits.

    They are doggedly defending their financial interests.

    The comment by the unnamed spokesperson for the University of Oxford is particularly offensive and hypocritical given the PACE authors role in attacking the integrity of ME patients for decades.

    “Oxford University considers Professor Sharpe and his colleagues to be highly reputable scientists whose sole aim has been to improve quality of life for patients with ME/CFS. While scientific research should always be open to challenge and debate, this does not justify the unwarranted attacks on professionalism and personal integrity which the PACE trial team have been subjected to.”

    Anyone who wishes to understand how the statement – Michael Sharpe and his colleagues “sole aim has been to improve quality of life for patients with ME/CFS” is a lie should read ‘In the Expectation of Recovery’ by the Centre for Welfare Reform which clearly demonstrates Prof Michael Sharpe’s and his PACE trial colleagues including Prof Peter White’s motivations to remove insurance and state benefits and care of ME patients with their research and particularly with their landmark PACE trial.

  • Sue Wilson

    I wonder if Prof Macleod was aware of what he was doing or if he blindly (ignorantly?) wrote a blurb about colleagues he has writtten papers with previously (Sharpe, Chalder) to support his mates in times of trouble. Very brave of him to jump on a ship that is clearly sinking. Was he unaware that everyone could quickly see that his COI statement was not water-tight either? This does his and Edinburgh University’s reputation no good!

  • Victor

    Professor Macleod wonders where some of the anti-PACE authors come from. Personally, given his inarticulate defence of a piece of shambolic pseudoscience, I’m wondering where he comes from; Cloud Cuckoo land seems a fair bet.

    As for Ox. Univ. and their reference to “unwarranted attacks on professionalism and personal integrity which the PACE trial team have been subjected to”, they surely deserve some sort of prize for managing to cram so much unwarranted self-importance and patient-smearing into such a narrow compass, whilst avoiding the real issues entirely. If this is the level of academic debate Oxford University is capable of, then standards there really have taken a turn for the worse.

    PACE has been talked up by now way beyond its deserts. Only the ignorant, the insane or the devious would want to continue to support it.

  • Jill Maxi

    nobody i know has been helped by the interventions suggested by this flawed study. can you hear the sound of laughter coming from the future? one day when this illness and others like it are better understood all of these folks will still be defending their research because they are invested in their research and not in helping people.

  • Lady Shambles

    Oh and there I was thinking it’s the ‘Simple Minds Club’? Silly me.

  • Joan Byrne

    Another masterpiece of writing David, deftly and swiftly picking apart every word. If that’s all the SMC and the PACERS have to offer in their defence, the game is well and truly up. The rancid boil that is the UK psych cabal is just about ready to burst. Time to LANCET

  • Paul Fox

    How very disrespectful!

  • Alex Young

    The SMC claims to be an independent provider of news and views on science. On numerous occasions its been shown to be engaged in scientific politics, promoting views of research from specific industries and scientific groups, and clearly operates as a public relations organization a lot of the time. Its not a news distributor, its about persuading on matters of science. They even wrote about manipulating views about CFS/ME advocates. The is medical and scientific politics. At best the SMC should be viewed as a partisan think tank.

    On arguments from authority, or citing authoritative processes, its designed to persuade without providing evidence. Its also a double edged sword. When the PACE fiasco settles anyone who is supporting PACE will have to face whatever views the scientific and medical communities then take. It would be evidence not only of failure at places like the Lancet, SMC, MRC and NICE, especially in the review process, but also of failure to even recognize they have a problem.

    This is such a big scope that I think a fully independent Royal Commission in the UK is required to investigate, and include investigation of NICE and the MRC at the least.

  • Lou Corsius

    sic transit gloria mundi….

  • Sandra

    “While scientific research should always be open to challenge and debate, this does not justify the unwarranted attacks on professionalism and personal integrity which the PACE trial team have been subjected to,” says the spokesperson from the University of Oxford.

    I say: they did it to themselves. That is the fallout that happens when you put shenanigans into your research trials. If the shenanigans were never there in the first place, critics would not be pointing them out. They have no one to blame but themselves. Simple as that.

  • Ivy

    I agree. The basis of argument seems to me to be: { these are top scientists therefore their research is excellent. So to challenge this is nonsense. } – assumptions do not prove a case.

  • Diane Kirk

    Continued thanks to you David for advocating for people with M.E.

  • Garrett W.

    Professor Macleod’s lack of understanding between “chronic fatigue” and chronic fatigue syndrome does NOT seem to be a result of blind ignorance or stupidity. It seems more of a common practive among a few top British psychiatrists to purposely obfuscate these two terms. They have been doing it for years. They need to be called out on it and it needs to stop.

  • Roland

    The comment from Professor Macleod where he addresses the disease as “chronic fatigue” was definitely a red flag. His attack on the authors of the commentaries is so appalling. He is trying to discredit others in a poor, last-ditch effort to try and salvage the sinking ship that PACE is. What bothers me is why he doesn’t question the conflict of interests of the PACE authors.

    Yes, PACE was published in The Lancet which is recognized as a high-impact journal. However, as David pointed out, retractions can happen. Science and Nature are among the most prestigiously recognized scientific journals. As a graduate student, I dreamed of publishing in one of these two. However, both of these journals have suffered their fair share of ridicule and retractions. Remember the retracted Science paper that claimed to link XMRV to CFS? You can easily find dozens of papers retracted from high-impact journals – just go to Retraction Watch or The Scientist Magazine. Many of these papers’ authors were also once regarded as “highly reputable scientists.” At some point, all of these retracted articles also underwent a “robust peer-review process involving experts in the field.”

    I’m a bit shocked at how little “meat” there is in the comments made by these three critics. If PACE were such a truly infalliable study, I would have expected MANY more people defending it, but this is simply not the case, especially since it is clear that a fair number of psychologists are siding with ME/CFS patients in their fight against such poorly done science.

    If I had tried to run such a poor study such as PACE during graduate school, my dissertation committee would have kicked me out in the blink of an eye.

    Additional reading:
    http://www.nature.com/news/why-high-profile-journals-have-more-retractions-1.15951
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0068397

  • Freda

    The objective data from the PACE trial 6 minute walking test shows about 1/3 of participants didn’t do the final test, of the people that were able to do the final test the average increase on walking was 33 metres? On the basis of calculated VO2 max estimations these people are still extremely disabled. The STEPS and HR and Borg perceived effort data has not been released despite an ongoing FOI request since early May on the What do they know site. When will the Science Media Centre actually do science??? I guess once changes up top are made.

  • Gina

    Some people have been helped by GET and CBT but that is not relevant as the issue is foistering these management tools as treatments on everyone with NO objective physiological basis. Those at the milder end who have been helped are just lucky that the program worked for them…the rest of us need tools like heart rate pacing and anerobic strengthening to improve our quality of life…where is the exercise science? The oxygen uptake data, the metabolic testing (in the PACE manual but not carried out).

  • Mark

    Then nameless men and nameless experts are quoted yet again in support of PACE. NICE rely on nameless experts as well. The Science Media Centre also relies on the nameless experts???? Who are the nameless???? What is the connection/s between the nameless experts and the insurance industry???? Why don’t the nameless PACE supporters explain why the PACE flaws and faults are OK?? How many of the nameless profit directly or indirectly from their links to the insurance industry ??? Where are Simon Wessley, Peter White, Micheal Sharpe, Esther Crawly, Trudi Chaldler…….are they the nameless, do they pull the name less strings??? Why is it only in the UK that healthcare policy is based on the view of the nameless and flawed and faulty research. They say the nameless are nameless due to the threat of harassment despite the First Tribunal clearly finding this absurd. Universities prepared to sully their reputation by standing behind false and flawed science but unable to address the flaws and faults or quash the arguements about the science….only in the UK.

  • Brenda Vreeswijk

    Thank you David for pointing out every single flaw in each statement, there were few words left that were true. Every time they open their mouth (or write a comment ) they make a bigger fool of themselves and on the internet…that will never go away.
    Why do these people give up there credibility as a professional to defend this paper?? They must receive a really good payment I guess…or other benefit…have no clue whatsoever why they would do this otherwise. Everybody knows you can
    t defend crap…in the end…it’s gonna stink….

  • Jen

    Yes, it was easy to ridicule patients, but now eminent scientists are taking an interest seeing the truth of this fiasco, it’s actually making the pace authors look ridiculous. I can’t believe it’s taking so long for science to win out over pseudoscience, but I guess that shows the level of power and influence the PACE authors weild and that is very worrying considering their agenda and links with governments and private insurance giants. :/

  • JohnDStone

    The problem with Horton and Wakefield is, however, precisely opposite to the popular history. Indeed, Horton may have been a relatively honest broker at the beginning of his career when he published the Wakefield article. The rest has to be viewed as the usual course of official British science, or perhaps official British bullying.

    http://www.ageofautism.com/2017/08/the-british-establishment-in-ethical-collapse-over-vaccine-damage.html

    http://www.ageofautism.com/2008/12/smoke-and-mirrors-dr-richard-horton-and-the-wakefield-affair.html

    http://www.ageofautism.com/2010/03/lancet-boss-failed-to-disclosed-own-conflicts-to-parliament-while-denouncing-wakefield.html

  • Robert McMullen

    With every press release on ME/CFS the SMC’s resemblance to George Orwell’s Minstry of Truth becomes ever more apparent. Its claims to be independent without “any specific agenda other than to promote the reporting of evidence-based science” look increasingly absurd. There are some signs that some UK science journalists may finally be waking up to the reality of the SMC propaganda.

    Thanks again, David. Keep up the good work!

  • JohnDStone

    They are a UK based industry sponsored public relations outfit who spoon-feed the British media with what they are allowed to report, and is probably an unofficial satellite of the Department of Business.

  • Paul Fox

    Yes, and to point out the nature of these shenanigans is not a personal attack. It is a statement of fact, and of dismay that so-called “professions” should act in such a way, i.e. without professionalism and without personal integrity.

  • Pingback: Trial by Error: The Science Media Centre’s desperate efforts to defend PACE | WAMES (Working for ME in Wales)()

  • Lucibee

    “Lancet editor Richard Horton vigorously defended the Wakefield study for years, just as he has defended PACE. And just as The Lancet finally retracted that paper, it will ultimately have to retract PACE as well.”

    Just a small error to correct – Horton defended *the publication* of the Wakefield study, because the Lancet paper itself clearly stated, “We did not prove an association between measles, mumps and rubella vaccine and the syndrome described.” As far as he was concerned, the paper itself was the correct record.

    However, none of the media reporting on the study actually read the original paper, they just heard Wakefield saying the exact opposite.

    Horton only retracted the study once all the remaining authors had removed their authorship, and the study itself was found to be fraudulent in some aspects.

  • JohnDStone

    This is incorrect – the remaining authors did not remove their authorship. Under pressure in 2004 they dissociated themselves from the “interpretation” that MMR might be associated with autism or bowel disease. None of the authors have removed their authorship or disputed the findings of the paper. In 1998 Wakefield cautiously warned that parents might want to split up the vaccines – an option then available to British parents swiftly removed the government, though no doubt his views have become more forthright subsequently. Both Profs Walker-Smith (senior author and lead clinician) Murch defended the paper at the GMC and Walker-Smith who unlike Wakefield was funded to appeal was later completely exonerated in the High Court, which dismissed the GMC’s fraudulent claim that paper was based on a protocol commissioned by the Legal Aid Board. Later on the two histopathologist authors wrote to the BMJ defending the reporting in the paper against the allegations in the journal made by journalist Brian Deer. Two further authors stood with Wakefield in refusing to sign the so-called “retraction of an interpretation” in 2004.

  • Lucibee
  • Sandra

    And then to distract from the problems in PACE, they invent and spread the narrative that ME patients are anti-scientific, anti-psychiatry, dangerous militants out to harm researchers and should be disregarded at every turn, thus further stigmatizing this patient population. P-LEA-SSSSE! They get no sympathy from me.

  • JohnDStone

    I am re-posting a comment I left which Lucibee responded too but which disappeared apparently as result of technical problem:

    “This is incorrect – the remaining authors did not remove their authorship. Under pressure in 2004 they dissociated themselves from the “interpretation” that MMR might be associated with autism or bowel disease. None of the authors have removed their authorship or disputed the findings of the paper. In 1998 Wakefield cautiously warned that parents might want to split up the vaccines – an option then available to British parents swiftly removed by the government, though no doubt his views have become more forthright subsequently. Both Profs Walker-Smith (senior author and lead clinician) and Murch defended the paper at the GMC and Walker-Smith who unlike Wakefield was funded to appeal was later completely exonerated in the High Court, which dismissed the GMC’s fraudulent claim that paper was based on a protocol commissioned by the Legal Aid Board. Later on the two histopathologist authors wrote to the BMJ defending the reporting in the paper against the allegations in the journal made by journalist Brian Deer. Two further authors stood with Wakefield in refusing to sign the so-called “retraction of an interpretation” in 2004.

    “In 2004 Horton made claim on BBC News that he had not known that Wakefield was acting as an expert witness in the MMR litigation – in fact this was untrue. Wakefield made a disclosure in the Lancet in a letter published in May 1998 but Horton had been told in correspondence in 1997 before the paper was published, and he was forced to write a letter to the GMC changing his evidence.”

  • disqus_deFk895V6a

    I was misdiagnosed with chronic fatigue (had pre-existing diagnosis from ten years before that was simply ignored). GET left me crippled within two weeks and lying on my back for months and unable to eat hardly for weeks, with all access to NHS denied. I don’t think I will ever recover from the abuse I went through during that time. They literally laughed at me at A+E and the GPs. I have been housebound since and unable to stand up for much of that (prior to GET could travel abroad unaided). My medical history was ignored in favour of a need to get me onto the chronic fatigue label to save money it seems as since then I have been essentially denied access to any NHS services. My assessment I have since found out was manipulated to the hilt. Boxes were ticked that didn’t apply at all to me. All past medical history withheld on the form and made out the problem was new, not old. It would have cost the NHS zero to have correctly identified the same problem as before as all they needed to do was take me off the vitamin supplements I was taking (I was allergic). No mention of my previous history of an identical diagnosed episode ten years ago was mentioned in the referral or the assessment. Ten years ago the problem was identified abroad by doctors who bothered to take a history and find out what i was taking, and therefore I recovered very quickly. This time it wasn’t because in the UK many doctors view people as labels (‘tired’, ‘anxious’ etc…) and nobody had bothered flagging up my allergy on the system it seems or even bothered checking what i was taking. I was made to walk walk walk while still taking this supplement that was causing my heart and blood pressure to go haywire. Eventually my heart couldn’t cope any more. I don’t know if I’ll recover. A catastrophic failure to keep correct medical records or just a deliberate attempt to get the label put on me and get me off the care books. If their aim was to stop people accessing the NHS, they did a good job. I never want to step foot in an NHS facility in the UK ever again after what I have gone through.

  • Nic

    The cynical side of me thinks it’s a deliberate effort to confuse and un-educate GPs. Conflate the terms frequently enough and prominently enough and you get a population of GPs who think it’s normal, and who therefore believe everything the SMC spoonfeeds them with. A shortcut to rewriting the NHS and Parliament’s commitment to upholding the biological, physical nature of the illness, through misdirection.

    Certainly, from my own experience, I was diagnosed with ME in the 1990s, by a close-to-retirement GP who kept up with the latest medical journals religiously, had had ME for a (lucky-for-him!) comparatively brief period and so easily recognised the symptom pattern he saw in my dad and I (and a number of other patients), and who was well aware of the various scientific and political kerfuffles involved. I didn’t realise how lucky I was until he retired, and my new GP started talking about it as CFS instead of ME and refusing to treat the symptoms in any way unless I had a pre-existing prescription. And now my current GP (even younger!) not only prefers to use CFS, but has incorrectly referred to it as Chronic Fatigue in several formal referrals/letters (he seems to use CF and CFS interchangeably). It’s a worrying trend.