A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)

A new analysis of a 2013 paper that supported dubious treatments for the disease finds that its conclusions were “not justified by the data.”

CORRECTION APPENDED

Two widely prescribed treatments for chronic fatigue syndrome — cognitive behavior therapy, and a steady increase in activity known as “graded exercise therapy” — failed to lead to any recovery in patients. That’s the stark conclusion of a new reanalysis of data from the so-called PACE trial, the largest study of treatments for the illness, also known as myalgic encephalomyelitis, or ME/CFS.

The claims made by the PACE trial research were "highly misleading to clinicians and patients," the new analysis concluded.

The claims made by the PACE trial research were “highly misleading to clinicians and patients,” the new analysis concluded.

The PACE trial’s main results were published in The Lancet in 2011 and the journal Psychological Medicine in 2013. In the latter paper, the authors claimed that 22 percent of those who received either treatment “recovered,” about three times the rate in the study’s two other groups. The trial’s results have been hugely influential around the world. In the United States, the Centers for Disease Control and Prevention as well as major medical centers like the Mayo Clinic and Kaiser Permanente have long promoted the therapies, as Undark reported in a recent investigation.

But the trial has been mired in controversy for years. According to a growing chorus of well-regarded scientists and other experts, it suffered from egregious and disqualifying flaws. In the PACE trial protocol, the authors outlined four criteria that participants needed to meet in order to be considered “recovered.” In the 2013 paper, they dramatically weakened all four criteria, making it far easier to reach the “recovery” thresholds. In a bizarre paradox, some participants even qualified as “recovered” on two of the four criteria — measures of fatigue and physical function — at the start of the study, before undergoing any treatment at all.

For years, the PACE authors rejected requests from patients to release their raw trial data, which would have allowed others to calculate the results per the original protocol definition of “recovery.” Last summer, a British court ordered Queen Mary University of London — the home base of the lead PACE investigator, psychiatrist Peter White — to make the data from the $6 million trial available to the public. An independent group of researchers, using this newly released information, published the reanalysis last week in the journal Fatigue: Biomedicine, Health & Behavior.

In contrast to the results reported in the 2013 paper, the reanalysis found only single-digit rates of “recovery” for all four groups in the study. Moreover, there were no statistically significant benefits for cognitive behavior therapy (CBT) and graded exercise therapy (GET), the two interventions long promoted by the PACE investigators. “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments,” concluded the reanalysis.

Dr. White and his PACE colleagues did not respond to e-mails seeking comment. Neither did Robin Murray, a professor of psychiatric research at King’s College London and the U.K. editor of Psychological Medicine.

David Tuller is a lecturer in public health and journalism at the University of California, Berkeley, where he receives support from a Kaiser Permanente grant to the Graduate School of Journalism.

CORRECTION: A previous version of this article stated that a new analysis of a 2013 paper had concluded that the chronic fatigue syndrome therapies examined in that paper provided “no benefit.” However, the new analysis focused only on claims of “recovery,” and did not examine whether the therapies provided other benefits. The article’s subhead also originally referred to a 2011 study, but the 2011 article in The Lancet was a different PACE-related paper that was not the subject of the new reanalysis.

See What Others Are Saying

82 comments / Join the Discussion

    Our body charged with positive electron and control system work normally.

    If our body contact with negative charge, Our body may get negative electron.

    If our body charged with negative electron, our control system(gene expression or control)

    may changed and abnormal condition.

    If negative charged part is partially charged, mental disorder or digest problem or immune problem

    etc.. If most of our body charged with negative charged, several disorder occur and CFS.

    I can read the positive charge and negative charge from people, material, photo, earth, sound etc..

    Gene expression or body control signal may alter or change with negative charge.

    Cure CFS may easy and simple. Remove the negative charge source and body electric tune up.

    Reply

    Thank you so much for publicising this important work. The patient community has long needed established scientists to point out the flaws in the current treatments offered to people with ME. As a former referee for science journals it amazes me that this paper was even accepted in the first place.

    I hope this finds its way into the mainstream media that was sold a lie by the Science Media Centre.

    Reply

    surprise surprise, “Insanity is doing the same thing over and over again, but expecting different results.”

    Reply

    If there were more people like you we (M.E.-patiënts) where not bed-bounded during 20 years!!THANK YOU VERY,VERY MUCH♥♥♥♥♥🌹🌹🌹👍👍👍😘😘😘😘 BELGUIM THANKS YOU

    Reply

    Thank you, Tuller and everybody who has done such a good job, fighting for the truth.
    Thank you for bringing the truth to daylight!
    Let us talk about the facts and the reality in this illness.
    Lest do true and clean research to end this awful desease.
    We want to come back to life again.
    This is one big and important step in right direction.
    Thank you!

    Greetings from Norway.

    Reply

    THANK YOU, THANK YOU, THANK YOU, David Tuller and Undark, for all your efforts to expose this junk science. I’m into my 34th year of this illness. Some of us can’t even think, and the profound fatigue is immobilizing. I held a full time position as an Electron Microscopist and TWO part time jobs when this thing invaded my body in 1983. We are not lazy people. Most people know very well what it feels like to be sick to their stomach, but how do you describe what it feels like to be sick to your brain? The cognitive problems make it impossible for me to fight for myself. My gratitude is boundless for doing this for us!

    Reply

    I was one of the authors on the recent reanalysis you describe here, and I wanted to extend by thanks for this excellent article. My co-authors and I think this article is rather special, as it represents a collaboration between researchers and patients. I am lucky to have worked with such brilliant and dedicated group of patients, who have worked so selflessly to improve the lot of those suffering from this devastating and misunderstood illness – often at the expense of their own health.

    Listening to patients’ perspectives is always important, but never more so than when they suffer from an illness that is so poorly understood as MECFS. Here it is all too easy for researchers and practitioners to resort to psychological explanations and theories (you might say that medicine abhors a vacuum!). This kind of psychologisation is rarely evidence-based and can do real harm to patients. Not only can it negatively affect how patients are treated by their doctors, but in the long-term, it can significantly hinder research into better, more effective treatments.

    Reply

    It’s disgraceful that the bogus PACE trial has done so much damage and CBT and GET are still being touted as treatments for ME. I hope all the media outlets who published those claims will now post retractions on all articles mentioning GET and CBT.

    Reply

    My daughter has very severe ME. She had CBT for 4 years lying on bed. It did nothing. Only exhausted her mentally. We do not get care or cure. This is cruelty. Thank you Me.Tuller for keeping us updated

    Reply

    Blessing to those of us that wish that this material was true but know that have experienced the disastrous results it produces. This is not a lazy disease. Most of us are very competent, socially involved people. If we could exercise our way out of this we would have been out of it a long time ago.

    Reply

    Thank you so much Dr. Tuller, for helping to expose this dangerous pseudo-science!

    Reply

    Thank you David Tuller for all you are doing do expose the duplicity of the self serving individuals involved in the PACE trial. And thank you to UnDark for publishing this. M.E. patients desperately need this help.

    Reply

    Thank you David Tuller and Undark for shining a light on these dark deeds. Something I wonder about is why Lancet editor Richard Horton says this, ““The apparent endemicity of bad research behaviour is alarming. In their quest for telling a compelling story, scientists too often sculpt data to fit their preferred theory of the world. Or they retrofit hypotheses to fit their data. Journal editors deserve their fair share of criticism too. We aid and abet the worst behaviours. Our acquiescence to the impact factor fuels an unhealthy competition to win a place in a select few journals. Our love of ‘significance’ pollutes the literature with many a statistical fairy-tale…Journals are not the only miscreants. Universities are in a perpetual struggle for money and talent…” Richard Horton, editor-in-chief, The Lancet, in The Lancet, 11 April, 2015, Vol 385, “Offline: What is medicine’s 5 sigma?”
    Is is an anti-pharma ‘evidence-based medicine’ movement in tandem with building up the bio-psycho-social empire providing a range of variations on the theme of psycho-behavioural CBT/GET-type therapies for organic diseases, or is he trying to bury the bad PACE trial by claiming that bad practice around research is rife in any case, so that PACE doesn’t stand out too far from the crowd?

    Reply

    Thank you David Tuller, Undark!

    Interesting when medical professionals use a lot of public money to write a lot of words that actually harm a lot of people, and finally blame patients and others who warn about long time “side effects” as functional impairment..

    Good treatments do not cause negative reactions like this.

    Trustworthy? Not at all. Damage done.

    David Tuller, your decision might save more “PEM”-patients and their families from harmful consequences, so thank you!

    Reply

    Thank you for your continued efforts to shine a light of truth on the PACE Trial! Once again as one who was harmed by GET I want to thank you for your continued effort to get the word out that this bit of flawed science can cause physical damage to those who are pushed to try it. Until all doctors are aware of the problems GET can cause patients who have ME/CFS many will continue to suffer as they strive to follow doctor’s orders to do this type therapy. Your determination and effort on the behalf of millions with this disease is extraordinary and deeply appreciated! Never doubt that, David!

    Reply

    Dr Tuller,

    Perhaps sometimes you feel as though you are banging your head against a brick wall with this, but please, please do not relent until the self aggrandising PACE investigators are obliged to retract this fraudulent study, which has, both directly and indirectly, damaged so many of us.

    Even after such retraction will the Science Media Centre trumpet it’s failure to the press? That’ll be a cold day in hell.

    Thank you, and more power to your elbow!

    Reply

    When are White and his partners in fraud going to jail? If the field thay had been committing fraud in was one other than so called “science”, that is where they would be already.

    Reply

    Thank you Dr. Tuller. We, in the M.E. community, have needed people like yourself to help with this for years.

    Whilst I’m pretty sure that ‘bad science’ has always been around and that ‘good science’ will find it and correct it, I don’t believe that this is what happened here. The PACE trial was a fraud and a deliberate fraud. It has been proven to be that and yet nothing has happened to the PACE trial itself, to its researchers or those behind it. Why is that?

    Why has the Lancet not retracted it? As long as it remains in the Lancet, it can still be quoted, right?

    Why have the authorities not brought the PACE authors (and those behind the scene) up on fraud charges?

    How did they gain so much power?

    The psychiatrists ensured that they gained absolute power over M.E, (a neurological illness as defined by the WHO). That power cannot be gotten by one person. It requires the backing of others – others in power. Their control, their authority and their execution of their plan were malevolent and still continues – aided and abetted. It reached way beyond their own country and polluted far afield to the detriment of M.E. patients. They ‘owned’ M.E.

    So, the PACE trial was not just ‘bad science’. Indeed, one could not even class it as ‘science’ at all. It was fraud and it was deliberate fraud. It seriously harmed numerous M.E. patients and killed others.

    So where are the consequences?

    Why has the SMC not reported on this?

    Why are the relevant authorities not asking the obvious questions and taking the necessary action?

    It really beggars belief. When I first used to tell friends/family about the PACE trial and what went on, I know they thought I was a conspiracy theorist. In fact, the saying ‘truth is stranger than fiction’ applies here. We could not have made this up.

    Until the above questions are answered, until the PACE trial is retracted by The Lancet, until the relevant authorities do the right thing, PACE will continue to be quoted to M.E. patients and continue to do its harm.

    Reply

    Thank you David Tuller for standing up for us! You are my hero.
    Unfortunately the story of CBT and GET starts long before this PACE trial. In 1988 I was forcibly held in St. Mary’s Hill Hospital in Milwaukee, WI and forced to do CBT and GET until my parents insurance ran out at which point I was pronounced “cured”. The experience left me permanently debilatated and with horrific nightmares of the event. I know I was not their only victim. I had given up all hope I would ever get any help until you came along.

    Reply

    Thank you David Tuller and UNDARK, science into ME/CFS needs you. The UK is NOT responding to requests for information about the PACE trial. Notable silence from Simon Wessley, Peter White, Ester Crawley, Micheal Sharpe, Trudie Chaldler – Queen Mary Univeristy of London, Kings College, Bristol University, the Science Media Centre, the Lancet, BBC. Nobody is contradicting David Tuller and what he is saying with more authority and academic backing is what the patients have been saying all along. The Universities label any request for the as vexatious, side step the question, or say that another department is responsible…..nobody has ever provided any explanation for the lies of the PACE trial, no retration, no apology…millions of peoples health has and still is being adversely affected by the UK’s claims.

    Reply

    One wonders why the physiological abnormalities are STILL being ignored. Chronotropic incompetence after exertion, low anaerobic thresholds….instead of objective science PACE authors carry out rudimentary experiments and as if that isn’t bad enough massage the raw data to pretend GET and CBT as per their PACE manual work….that you UNDARK, for exposing the fraud the PACE trial is…………..

    Reply

    Thank you so much David Tuller, and thank you to UnDark for giving the story a wider audience.

    It isn’t over until this story gets into the mainstream media, the PACE studies are retracted, and finally all the official government recommendations around the world based on this dodgy study and its sort are scrapped.

    Reply

    Thank you so much David Tuller.
    For all your articles.
    And for everything you have done to expose the Pace Trial for the medical fraud it has been. And the criminal waste of UK medical research money. £5 million down the drain. Plus over £200,000 spent on the legal fees to attempt to prevent this info from coming out.
    People with ME in the UK and throughout the world are massively grateful to you.
    The damage that Pace and this field of “research” has done to people with ME / CFS is incalculable. The endless reports of GET causing harm to patients – all ignored and dismissed by doctors. Just give them more CBT to change their false beliefs . . . The way CBT seems to be used for ME/CFS – they should call it Criminal Brainwashing Technique . . . !
    But it is unbelievable that this has been allowed to carry on for so long. Resulting in so many lives ruined. Or at least very much reduced. And people have actually died. The tragic cases of Sophia Mirza and Lynn Gilderdale were mentioned in another comment. But I wonder how many others have died ?
    I cannot understand the cloak of silence in the UK media over this. Now that Pace has been exposed and discredited. There is still very little publicity in the mainstream media. This in itself feels like another scandal.
    On twitter I have seen a few people in the UK compare this to the scandal and cover-up of the Hillsborough disaster.
    But this is much bigger and much worse. It has affected millions of people worldwide. Who’s lives have been totally trashed by this illness. Some living like zombies for decades. No “life” at all. And often abandoned by friends and even family because of the poisonous mistruths of the psychiatric lobby. Who have fed them to the UK media – who have lapped them up.
    My level of ME means I have been living a very reduced life, especially for the last few years. It has been grim.
    And there are many much worse off than me.
    But I feel the tide is turning now. Thanks to people like you.
    And this gives me hope.
    Thank you again.

    Reply

    Time for the naysayers to take heed and stop beating the dead horse called CBT and PACE. Thanks David!

    Reply

    I feel the same as Elle See stated…..”The ME/CFS community is fortunate to have people like you fighting for us. ……you have my deepest gratitude.”
    Thank you David Tuller and Undark!

    Reply

    Thank you so much for all the research and writing you have been doing to help the ME/CFS population. I seriously don’t even have the words to tell you just how much I appreciate your work and advocacy. I want to write a lot more in response to what you have written, as well, but I do not have the ability right now, because unexpected events have caused me to push way beyond what I can normally handle, and I am crashing badly now. This is worlds away from what my life was like before getting sick, and I’d give so much to have even half my previous health back.

    Reply

    I invented the method of treating chronic fatigue with exercise in 1976-1983 to treat my own fatigue.
    I was unable to follow the standard instructions of gradually improving each week so I developed the concept of doing everything at my own pace.
    Simon Wessely started stealing my ideas in 1987, and his colleague Peter White began staling more of my ideas in his 2008 pace trial.
    All he did was to prove that the old methods fail, and that my method is the best.
    He found that my method of exercising at my own pace is still the best.
    However, instead of calling it Banfield’s exercising at your own pace method”, and paying me royalties, he just called it pacing.
    The pace trial, is just another example of other researchers “trying” to steal the credit and the money for my method,
    See here http://www.theposturetheory.com/cfs-and-exercise/
    Max Banfield

    Reply

    There is nothing novel about sick people pacing activity. So don’t think you or any one can claim this as their exclusive idea. Pacing has worked for thousands of years. CBT and GET do not work nor have they ever worked to cure or produce any significany measurable benefit for ME patients. The data speaks for itself.

    Reply

    The PACE trial didn’t even test pacing, that’s one of the deceptions perpetrated by those involved. They used something invented specifically for the trial, which they called Adaptive Pacing Therapy, which is more akin to a form of graded activity but nothing like pacing that patients do to minimise post-exertional neuroimmune exhaustion, and which, surprise-surprise, fared worst of all four ‘treatment’ arms of the PACE trial.

    Reply

    “Dr. White and his PACE colleagues did not respond to e-mails seeking comment.”

    Too bad. But really, what could they possibly say?

    Reply

    Thanks David. Having been forced by my LTD insurer to do the PGAP program a few times. I can concur that CBT and GET have zero benefit and can both be very harmful. PGAP, a profit program developed by Professor Michael Sullivan of McGill University combines CBT and GET and is usually implemented by OTs under contract to insurers. The harm with the CBT is they use it to try to get ME patients to push their pacing limits. While it is clearly CBT and GET program of PACE, interestingly they don’t recognise PLACE like in the PGAP program. Perhaps because they might have to share the profits? Whatever, the sooner PACE is completely retracted and the “researchers” nailed for the fraud found, the better it will be for ME patients around the world. Otherwise PLACE theory will be continued to be adopted as scientific fact and implemented in “therapy” programs of different names.

    Reply

    Super hero,s in the ME WORLD 🌍 THANK YOU 💑 😇 let the Good science shine through. Let the very bad GET LOST out of ME WORLD & TAKE their CBT believe with them. I have been very badly damaged following this misleading guidelines 💔 I want Retraction! RETRACTION! RETRACTION!! = STOP MORE HARM!! RESPECT ME NOW = BETTER KNOWLEDGE FOR FUTURE GENERATIONS. LOVE the SUPER HERO,S IN ME WORLD 💛 YOU BRING BACK HOPE FOR ME PEOPLE

    Reply

    Thank you David Tuller and Undark.

    You give patients hope that guidelines on treatments will change at last. The old advice that “exercise helps” is plainly irresponsible, and needs to be erased.

    Reply

    It is high time that this paper, on the PACE Trial, be retracted from the Lancet. The false impression given by this misleading paper continues to teach doctors nothing about CFS, and it does not encourage proper scientific study into the disease. The Institute of Medicine declared it a disease giving it the name Systemic Exertion Intolerance Disease. Questions should be how to treat exertion intolerance, the blood pressure irregularities, and so many more avenues, rather than just let us do very little for a very long time.

    Reply

    A very big and heartfelt thank you from my daughter, this gives her some hope. Shame on our NHS, our government and the BPS bunch who could not care less for ME patients. Thank you David Tuller, Undark!

    Reply

    The patients could have told them and saved a heap of wasted money, time and frankly abuse. It continues elsewhere though. I hope you can expose the damn lot!!!! MEGA

    Reply

    It is interesting that this post truth science paralleled the growth of spin and post truth politics. It seems to be a cultural phenomenon, where the researchers are less interested in science than in the process of service provision and in the process of placing themselves and their product in the market place.

    The PACE researchers never seriously attempted to evaluate the theoretical basis for their therapeutic interventions. In general the biomedical research into ME across the world is starting from the point of trying to understand what ME is, however the proponents of the psychosocial model of ME have never attempted to gather any evidence for their unorthodox fringe understanding of the disease.

    The PACE apologists have also demonstrated no interest in addressing any criticism of their methodolies or theoretical basis. Because they do not have a clear concept of what ME might be they fail to spot the logical contradiction of proposing exercise as a therapy for a disease that is by definition made worse by exercise. Post exertional malaise is a defining symptom of ME/CFS but they are happy to disregard it and to conflate the symptom of chronic fatigue with the specific disorder of Chronic Fatigue Syndrome. That researchers in the UK and in Holland seek to continue to extend the possible markets for their therapeutic product, in complete disregard for the serious scientific flaws in their methodology and the accumulated evidence for incompatable disease models for ME, tells us far more about the cognitive processes of these researchers than it tells us about ME/CFS itself.

    Just as the above reanalysis of the original PACE data indicates the researchers saw no problem in post hoc data manipulation to promote their product, current researchers with such as the MAGENTA and FITNET trials see no problem in post hoc modification of their theoretical underpinnings without any evidence base. Such as Prof Esther Crawley claims to accept that ME/CFS is an organic condition but uses pseudo science to claim that the PACE product reverses the underlying biomedical disease, this is not biased on any serious attempt to understand the condition empirically, indeed she continues to conflate chronic fatigue arising from many causes with the disease entity ME/CFS. Prof Crawely is more at home in the media and ‘science’ related pressure and/or policy groups than she is in the international ME/CFS research community. Her current foray into biological research through the MEGA project is interestingly with scientists all of whom are new to the field of ME research, and who have so far declined to respond to the ongoing PACE scandal. The only conclusion can be that she is determined to continue to seek new markets for the GET and CBT products regardless of valid scientific methodologies or any meaningful evidence base.

    However it is unfortunate for research in the UK and for ME patients in the UK that these researchers have used their product placement skills to mesh smoothly with the political zeitgeist of efficiency and quantifiable health products to dupe the medical establishment and to hijack service provision and research grants for decade.

    Reply

    Thank you for your (seemingly endless) work exposing the wrongs perpetrated on a group of very sick people with ME/CFS. It is appalling that ‘science’ as bad as the PACE trial was accepted through peer review in the first place. The ME/CFS community is fortunate to have people like you fighting for us. Again, you have my deepest gratitude.

    Reply

    Finally the truth is coming out- the Science Media Centre and its biopsychosocial colleagues are being remarkably silent, as is The Lancet, Simon Wessley, QMUL…..

    Reply

    ME clinics throughout the country that have been torturing patients with these useless and sometimes harmful treatments should be closed. I’m sure,with the NHS in the state it is, all those psychiatrists could be better employed treating the mentally ill. Any money saved could be spent on researching a reliable diagnostic tool.

    Reply

    This incredibly flawed trial has been treated as though it was hallowed ground for the past 5 years. To avoid scrutiny, the authors have instead sought to cast critics as militant and unstable. And yet, the critics have been vindicated because PACE is the junk science that critics have been pointing it out to be. The medical profession is slow to respond, but we will press on regardless. This particular ship is sinking and we are looking towards the quality research in the field (of which there is much). Thank you, David, for your incisive and relentless analysis of these authors’ work, and for holding them to account.

    Reply

    Thank you for unmasking the quackery! Now let’s demand ACTUAL SCIENCE to discover more on etiology and helpful treatments for ME/CFS! These frauds set us bacl too long already.

    Reply

    Thank you so much for your continuous support on the PACE trial.

    Despite all the great work on publishing the flaws of the PACE trial and re-analysis of the results it somehow seems like were not able to reach the clinicians. So sad that we still can’t seem to make a change for millions of ME/CFS sufferers worldwide.
    I agree with Anil (earlier reply) that probably many clinicians can’t believe that this truly has happened (or there are way more published misleading trials….which should not be discovered).
    If clinicians truly only ‘believe’ what is published in the Lancet and PlosOne, than the Lancet and PlosOne should publish the re-analysis. They need to take responsibility and set things straight to not loose credibility. They owe it to the ME/CFS sufferers, as they were kept away from a real treatment as ME/CFS research has been lacking funding due to this supposed cure according to the PACE trial.
    As for the credibility of medical journals: how will they prevent publishing misleading information? What is more important nowadays? The ego of the scientist (publishing is more important than accuracy of results)? Introducing predecided treatments covered by a fake trial? or decent health care based on accurate reliable scientific research?

    Reply

    Millions of patients are affected with myalgic encephalomyelitis and suffers from the consequences of bad science widely promoted by the British psychiatrists. Physicians from around the world erroneously believe that patients have erroneous illness beliefs when in fact they are physically ill.

    i would like to thank Dr David Tuller for bringing this injustice to the world’s attention.

    Reply

    Thanks to David Tuller for another excellent article exposing the monstrosity that is the PACE trial. Sadly, no one of influence in the UK is listening, no mainstream health/medical journal editors are picking up this hugely important story. Instead, it is business as usual for key players, Wessely, Sharpe, White (retired), Chalder, Crawley, Moss-Morris…and the rest… they don’t appear to care about the reality of ME sufferers. They don’t appear to care at all.

    Reply

    What’s arguably the worst part of this fraud is that these therapies aren’t simply useless, they’re harmful. Like one patient said in an interview, it’s like pushing diabetics to increase their sugar intake.
    If pushing one’s limits physically, and convincing oneself that one isn’t really sick, were the cure, I’d never have had ME to begin with! For many years as it worsened, I kept up my beloved career (physical, long days) and my number one hobby of fitness, and I was deeply in denial, always making excuses like I’d overslept or underslept or maybe had a cold coming on. I pushed my body and I told myself I wasn’t sick, and yet, the ME got worse & worse.
    Now that I’ve been diagnosed, a savvy dr has advised me to limit my activity, and I’ve seen good results- no more crashes where I’m in bed for 20h a day. It’s obvious to most of us patients and savvy drs that pushing WORSENS the disease, and restraint in activities IMPROVES it. I am scared for all the patients who go to a dr who read this vile study and hasn’t noticed that it was debunked. People who are following that advice will get worse and possibly never regain the health GET steals from them.
    As for pushing CBT, it’s disgusting a study was ever approved to do something so cruel as bully sick people into believing that they’re only sick because they choose to be. Imagine if they did that to cancer patients!
    We need to get the word out that this study was a fraud, so all the entities influenced by it will change their ME protocols! And after that we need to get some money into REAL studies and find out useful info.

    Reply

    Another excellent article on the smoke and mirrors called the PACE trial. What astounds me is that the Lancet would not at minimum publish both the PACE trial teams reanalysis of their results after the data were forced released by the tribunal and the independent analysis. One would expect them to withdraw the paper as they have with so many others. This exception causes wonder as to their motivation – cronyism?

    Reply

    The Lancet, NHS, British government, insurance companies, at least two ME “charities”, and the healthcare and research community don’t care that the PACE trial was and is a research lie. They don’t care.

    Everyone wants to save face and keep the torture chamber ME Clinics and the jobs they provide going. Not providing real research saves money and the fake Esther Crawley research will go on providing her and her minions jobs and salaries.

    Reply

    Today I am in agony reading your much appreciated and admired article. The injustice I was put through in 2010 whilst dealing with the diagnosis of fibromyalgia and cfs in 2009 was made exceptionally difficult by fabrication of #PACE . My Leading global employer from whom I was seeking compensation for overwork, was meeting with David Cameron at Chequers whom we all know funded this debarcle of a falsified study. Always left wondering if there was a link.

    Reply

    Actually, PACE was approved and funded during premiership of Tony Blair. It fit perfectly with Blairite (New Labour) plans to “reform” benefits as well as tailor research to suit government policy.

    Reply

    I firmly believe that eventually good science will correct bad. Now that it has, in this case, the original papers should be retracted, simply because they have been so influential.

    Thank you for spreading the word about the mounting evidence against the badly flawed PACE study.

    Reply

    Thank you so so much David, for showing what a failure PACE and GET is for M.E
    I am so struggling at the moment, so we need great men like you as our voice.
    From mild ME to severe because of GET & PACE, despite being an ex triathlete and Personal Trainer. Any form of repeated exertion causes severe relapses.
    Keep up the amazing work, you are so appreciated from the ME community

    Reply

    Thank you so much for your continuing support. This whole PACE debacle is nothing short of wicked.

    Reply

    It’s tragic that these “researchers” are so willing to put the health of their own egos before the health of the patients they supposedly want to help. You’re fighting the good fight, Tuller, and it’s much appreciated.

    Reply

    Thanks again for your crucial work in drawing attention to the PACE farce.
    The stigma and disbelief encountered by people with ME exacerbates their suffering so much as well as hijacking vital funds needed for essential biomedical research

    Reply

    The medical community should be embarassed to have been misled so badly for so long, when the problems are fairly obvious.

    In fact, there is an elephant in the room in the form of this sort of study being very common in some branches of psychiatry. The amount of harm done to patients and broader society by wrong health information generated by studies so flawed as to be virtually guaranteed to be misleading must be enormous.

    Reply

    You have no idea how grateful the international ME-patients community is for the balanced journalistic and scientific work from David Tuller and others. We, as a group, have suffered greatly from the ‘results’ of the PACE trial and other ‘research’ that promotes CBT (combined with mandatory GET) as a ‘proven remedy’ for our debilitating disease. It has taken us back half a century. Not only in the scientific approach, but also in the recognition and care that we receive from society. This bias-based researched is a disgrace for science as a whole. It is giving medical psychology a bad name and the flawed research should be retracted as soon as possible. I have been very ill for over 17 years and all this time I have been waiting for a real cure. Can we please turn this page for once and for all? I hope to live the day when the ME-puzzle is finally solved. The responsible ‘scientists’ for the Pace disaster carry a heavy burden on their shoulder. Persisting in denial, as they tend to do, will only make this burden heavier. Stop labeling us as fake-patients that can be treated with fake-remedies. Let the real science finally prevail.

    Reply

    Questions remain such as why was in excess of £250,000 public money spent denying access to public funded research, until there is accountability for such decisions it can and will happen again. There will not be a fault line between the way we did medicine (secretive, clubbable) and the way we shd do medicine (transparent, shared) that the PACE trial should mark.

    Reply

    Thank you for continuing to put this out there. How can we help to get it into other journals with scientific cred? And more mainstream publications? I sense that until PACE is fully retracted funding for ME/CFS at the NIH will continue to be tepid at best. While it stands, so do ideas that block better funding, despite their own advisors saying otherwise.

    Reply

    Thank you – you are doing a fantastic and very important work about this. Greetings from Denmark.

    Reply

    Thank you David Tuller for posting this.

    Very interesting that you mentioned that this was misleading to patients but also to clinicians.

    Indeed. Many clinicians are still in denial that a trial like the PACE-trial could be flawed. Peer reviewed, published in the Lancet and Plosone, with “scientists” from top universities. This is the system that they trust. The west doesn’t offer this type of fraudulent stuff right?? If this is true, what should they believe in or hold on to. And sadly it is true.
    In the Netherlands general practitioners have to recommend CBT first before anything. Cause it’s “evidence based”. I think the shock of being fooled by the PACE trial authors and the western medical system will be a huge blow. And of course we have the same in Nijmegen with Blijenberg, van der Meer and Knoop.

    The PACE-trial needs to go down cause it was THE example of a huge CBT /GET trial to prove that this type of treatment works. But in every country the same trials show the same result. Based on variations of the Oxford criteria they all mean nothing. They show people with chronic fatigue can improve. That has nothing to do with ME and the cardinal symptom Post Exertional Malaise.
    Hopefully clinicians will start thinking for themselves and listen to the patients.

    “There is only one cardinal rule ; one must listen to the patient” – Oliver Sacks –

    Reply

    Thank you, Dr. Tuller, for your outstanding work exposing the truth about the PACE Trial and the scope of unethical conduct of the study authors. It is unfortunate, indeed, that the study authors lack the courage and integrity to respond to questions about science and scientific methods.

    Reply

    I suspect these days their reluctance to respond may be on the advice of their lawyers as much as anything else, albeit the same as they have always done anyway. Hopefully the time is coming when they will need them. With the excellent work of David Tuller and others continuing to tell the truth, the whole truth, and nothing but the truth, that day surely gets closer.

    Reply

    Thanks to everyone involved in rebutting the PACE study which has done so much damage to the ME/CFS cmmunity. Science works.

    Reply

    Thank you, David Tuller, for continuing to bring the jaw-droppingly bad science in the PACE trial to public attention.

    The silence of the editors of Psychological Medicine, and of the study authors, on the appalling flaws in the “recovery” analyses is a disgrace.

    They all bring shame on British science.

    Why won’t they do their jobs and put patients first?

    Reply

    Thank you, Mr. Tuller and UnDark, for continuing to cover this story. The only proper action that the Lancet and Psychological Medicine can take is to retract both papers. All of the institutions and medical associations that rely on these flawed data for treatment recommendations must also revise their guidance. Patients are being harmed, right now. If these kinds of flaws were found in a pharmaceutical trial, the drug would be immediately withdrawn from the market and all doctors would be notified.

    Reply

    Thank you to all who have prevailed in uncovering the misconduct of the researchers, authors and all those who have supported PACE and its recommendations. The PACE publication, which has masqueraded as science has harmed so many ME/CFS patients and their family’s. It is time for it and all subsequent citations to be relegated as junk, not even science.

    Reply

    Thank you for this. I’m going to pass this information to the families of Sophia Mirza, Lynn Gilderdale & Karina Hansen. The unimaginable horror of living with Severe Myalgic Encephalomyelitis these 3 young women had to suffer with can now be validated. It’s too late for the Mirza & Gilderdale but they will be comforted. Karina has now been reunited with her family and this news is something that will be helpful should the Danish Health Care system decide she needs further “deconditioning”.

    Reply

    I do hope this latest study will be included in the wealth of information NICE should be looking at when deciding whether to update CG53 next year. PACE is no longer credible in supporting the guideline as it stands. Time for change. Thank you for highlighting.

    Reply

    Down with that junk science. The patients always knew this. Anybody who has looked at any of the thousands of biomedical research papers knew this. Psychiatry has no business involving itself with this serious and debilitating condition. No more than they should be involved with something like cancer or AIDS. This was fraud. And i’m happy to finally see that it is now being publicly revealed as such.

    Reply

    Thanks for your work exposing this line of fraudulent and harmful research.

    Reply

    Thank you for continuing to expose this so-called research – it has negatively impacted ME patients’ access to biological research funding and appropriate treatments. No doubt the PACE trial and its proponents will be medically infamous and cited in textbooks as a prime example of unchecked and egregious egos run amok right next to the Tuskegee ‘research’.

    Reply
Join the discussion

Your email address will not be published. Required fields are marked *

Top