Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.

By Jerome Burne

Would any doctor continue to prescribe a drug which they had been told would benefit 20 per cent of patients with a specific illness, once the truth was revealed to be around 7 per cent, only one percent better than no treatment at all? You’d have to hope not and that concerned and angry doctors would then shout loudly that they had been lied to and that patients had endured years of pointless treatment.

Something like this has just been discovered about the official treatment for a condition that affects an estimated 150,000 people in the UK. Many are bedridden or on disability allowance and refusing to follow this NICE-approved treatment, can lead to a withdrawal of benefits.

The condition is Myalgic Encephalitis (ME) or Chronic Fatigue Syndrome (CFS) and the discovery that exercise plus psychotherapy are effectively useless was the result of a remarkable and very unexpected legal victory last month. It’s potentially a grave embarrassment for several senior psychiatrists and the Lancet, a respected medical journal.

Doctors and patients have long disagreed about the causes and treatment for ME/CFS. The official position is that the cause is unknown but that there is a strong psychological component to the disorder and that the best treatment at the moment is a form of psychotherapy called CBT (cognitive behavioural therapy) along with ‘graded exercise’ – doing a bit more every day.

The very serious effects of ME/CFS

Patients point to thesevere and debilitating symptoms which include:profound fatigue, poor memory and problems with thinking, irregular changes in blood pressure and waking up feeling as tired as when you went to bed. They argue that these are far more likely to be the result of a serious and fundamental biological disorder perhaps in involving infection and the immune system.

What’s just happened involves hidden clinical trial data – an issue which is becoming increasingly important if doctors are going to give the best information to patients.

In justifying their position doctors have relied on a big trial of CBT and exercise lasting five years and costing £5 million, which reported that 61 per cent of patients benefited.

But following the legal victory last month some of the data from this trial has been re-analysed and the result, published last week, suggests that the size of the benefit has been massively exaggerated. It had been claimed that 60 per cent mproved and 20 per cent recovered but the new analysis found that 20 per cent improved while the recovery rate was around 5 percent. (Details here.)

The trial known as PACE (link to article) was published in the Lancet in 2011 and persuaded NICE that CBT and exercise should be the standard treatment. Campaigning patients were far from persuaded, however, and ever since then they have been trying to get access to unpublished trial data because they suspected something seriously dodgy had been done with the statistics to make the results so positive.

Refusal to release data due to fear of criticism

Their letters and Freedom of Information requests for the data sent to the researchers at Queen Mary University in London (QMUL) have been rejected for the last five years on various grounds such as risk of revealing patient identities and being vexatious or a form of harassment.

But it turned out that these objections were either exaggerated or simply untrue. We know this because one of the FoI requests was supported by the Information Commissioner’s Office and earlier this year QMUL was ordered to cough up. The university refused and then spent over 200,000 pounds to have the order dismissed.

At a tribunal hearing in August, QMUL’s claims were put to the test. There might well be good reasons for keeping trial data confidential but if there aren’t, then continued secrecy is simply unscientific arse-covering, damaging patients and undermining trust in doctors.

The most plausible sounding objection was that the patient data ‘wasn’t sufficiently anonymised’ so some of those taking part in the trial might be identified. But it emerged that unpublished data had already been shared with academics considered friendly, so anonymity had possibly already been breached. Besides which, the commissioner pointed out, sharing only with sympathetic colleagues looks like an attempt to avoid criticism. Not a good reason for challenging an FoI.

University claims dismissed as wild speculation

During the years after the PACE trial was published those supporting it often raised doubts about the sanity and motives of those challenging the findings. It’s a line that the tribunal also rejected. An example of such claims can be seen in this extract from the transcript of an interview with Richard Horton, editor of the journal the Lancet, which published the trial, on an Australian radio station in 2011.

He described his critics as: “a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”

QMUL was relying on a similar reason for declining to meet their critics requests. One of the expert witnesses explained that they were ‘young men, borderline psychopaths’ a claim dismissed by the Information Commissioner as ‘wild speculation’.

A similar wild claim – that their critics had been making threats – collapsed under cross- questioning when a witness admitted that there hadn’t been any threats. The only specific example that emerged was that one of the authors of the PACE trial had been heckled at a seminar.

How biased, unscientific and indeed evil

What’s striking about the report of the tribunal hearing (full report.)

is that the justification for keeping data secret, which is widely agreed not to be a good strategy in general, was so insubstantial. As the man who submitted this FoI – Alem Matthees, a bed-ridden patient in Australia – remarked: ‘False or misleading claims of recovery or remission for a debilitating illness have no place in the scientific literature’.

There is undoubtedly much anger among a substantial section of ME/CFS patients and they have been angry for a long time. I first wrote about this area over ten years ago after receiving a large bundle of documents in the post, supporting the idea of a biological cause, together with a note which read: ‘If you are able to expose just how biased, unscientific and indeed evil Wessely is, you would be regarded as a saviour of mankind.’ Excessive indeed but the material was plausible and scientifically literate.

The Wessely referred to is now Professor Sir Simon Wessely President of the Royal College of Psychiatrists who was then strongly identified with the psychological approach to ME/CFS. He wasn’t one of the authors of the PACE trial but was one of the doctors treating the patients and he has been a firm supporter. Last year he wrote a long blog post supporting the way the authors had handled their data.

When asked by an ME/CFS blogger last week about the finding that the effectiveness had been greatly exaggerated he was quoted as saying: ‘OK folks, nothing to see here, move along please.’He added thatthat patients did improve and that the treatments were moderately effective. You can see how such a response could make patients who were getting no benefit from treatment furious, incandescent even. It’s a variant on the infuriating: don’t you worry your pretty little head over it.

Not just report by ME/CFS patients that are ignored

Being alternately patronised or ignored, however much research you do, however forensic your critique, must have contributed to the anger that obviously fuels many patients. But the dismissive response to critics that emerged in responses such as Horton’s radio interview shows up in other medical fields. For example, with the cholesterol lowering drugs statins. Recently statin critics have been accused of killing people by discouraging them from taking these life-saving drugs. Complaints that doctors fail to listen to patients’ reports of side-effects from taking or trying to come off anti-depressants are common

The idea that the critics of the PACE trial form a small group of disturbed people with a dangerous agenda doesn’t really stand up to scrutiny. Over the past year twelve thousand CFS/ME patients signed a petition to put pressure on QMUL to release data for independent analysis along with over two dozen charities in 14 countries. Among those who analysed the released data and signed an open letter to the Lancet published online last year calling for a reassessment of the PACE trial were such senior clinicians and academics as:

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University

Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London

Leonard A. Jason, PhD
Professor of Psychology
DePaul University, Chicago

Bruce Levin, PhD
Professor of Biostatistics
Columbia University

The aspect of the trial they were all worried about was crucial to whether it showed CBT and exercise as effective or not. To decide if a treatment helps people recover, you have to have to be able to define what recovery looks like. Is it getting up for an hour longer or staying up all day? Being able to dress yourself or going back to work? If you make it easier to meet the definition, the number of people recorded as having recovered will shoot up. The critics claimed that the psychologists running the trial had dramatically weakened all of their “recovery” criteria long after the trial started, without seeking approval.

The result, claimed the patient blogger Julie Rehmeyer, was that participants could enter the trial, get worse on two out of four criteria, and then be called “recovered.” ‘It was possible to have poorer physical function than 92 percent of the British working-age population and still have ‘recovered’.

By getting some of the raw data from the trial, the independent researchers were able to assess what the recovery rates would have been if the original criteria had been stuck to.

A victory for patients seeking proper therapies

It’s not clear what the effect of the re-analysis is going to be. The activists obviously feel spectacularly vindicated. ‘It’s a victory on multiple fronts,’ says Vincent Racaniello professor of microbiology and immunology at Colombia University in New York. ‘For patients seeking the proper therapies but also for transparency in science and the need to have data available for review by others.’

But like Professor Wessely, the authors are simply continuing to deny there is a problem. ‘It makes not a ha’p’orth of difference,’ says the lead investigator on the trial Dr Peter White responding to the reanalysis. ‘Cognitive behavioural therapy and graded exercise are still statistically significantly better than pacing or specialist medical care.’

This seems to ignore a crucial fact – that the percentage benefiting was greatly lower than the trial had claimed. And far from making no difference, this result strongly suggests that there is a serious lack of any effective system for reassessing clinical results once they have been accepted. It took five years of informed campaigning plus a lucky legal action initiated by a bed ridden man in Australia to trigger a review; this cannot be the best way to do it.

If the findings of the reanalysis are confirmed – and there will have to be a lot more checking of them – it should prompt UK medical institutions to take a far more proactive approach to the biological underpinnings of ME/CFS. This is already happening in the USA. Earlier this month a ground-breaking study was published in a top journal – the Proceedings of the National Academy of Sciences. It claims to have discovered the ME/CFS holy grail – a clear metabolic signature that accurately distinguishes patients from healthy individuals.

The team, which carried out the research at the University of California San Diego also says that it has linked the biochemical changes that indicate ME/CFS to a down-regulation of mitochondria – the tiny power plants found in every cell. As a result, the scientists are claiming that:’(ME/CFS) is an objective metabolic disorder that affects seven of the body’s key functions.’ These include mitochondrial energy metabolism, immune function, GI (the guts) function and the autonomic nervous system. For a reader-friendly summary: see.

It would also be good if what’s happened with ME/CFS wasn’t regarded as just a little local difficulty. The need to take patient voices into account is much wider than that.

Jerome Burne

Jerome Burne

Jerome Burne is the editor of HealthInsightUK. He is an award-winning journalist who has been specialising in medicine and health for the last 10 years and now works mainly for the Daily Mail. His most recent book “10 Secrets of Healthy Ageing” was written with nutritionist Patrick Holford. He blogs at “Body of Evidence” – jeromeburne.com. 2015: Finalist for 'Blogger of the Year' award from Medical Journalists' Association.

46 Comments

  • ‘The official position is that the cause is unknown but that there is a strong psychological component to the disorder and that the best treatment at the moment is a form of psychotherapy called CBT (cognitive behavioural therapy) along with ‘graded exercise’ – doing a bit more every day’.

    That sounds spookily similar to the English “public school” formula for “building character”. Boys with “deficient moral fibre” were wakened with the dawn, forced to go on cross-country runs followed by cold baths, submitted to lots of physical exercise and team sports in an attempt to help them “snap out of it”.

    Not, perhaps, the most scientific treatment.

    • Drifting off the original topic (which is seriously scary) but what you describe sounds more like having a personal trainer these days. Up early, lots of physical exercise, group activities…oh, and eat lots of (moral) fibre. :-)

      • Editorial

        Sure does which is why it would be so horrible if there was a serious physical disorder underlying your inability to get out of bed

  • Mitohcondrial dysfucntion as an underlying issue with CFS has already been long identified see
    http://www.ijcem.com/files/IJCEM812001.pdf

    • Editorial

      Yes that is true and I greatly admire Dr Myhill but she ran into official trouble for it – for treating patients on the basis of it (?)- and has work has been shamefully trashed and ignored. So bringing up similar findings from a different source and with, I suspect, some different angles seems good idea. Ideas have their time and seems to me that mitochondria have been belatedly moving up the importance scale.

      • Thanks for this piece and good luck getting something into the mainstream media. Also, as a patient, I would say that while PACE trial is harmful junk science, there are a lot of problems with Myhill’s work too.

        • Editorial

          This is probably not the forum to discuss it but it is interesting you say that as my sense is that in ME/CFS politics you are either for her or for the psychologists.

          • While there are some who would see it that way I’d really disagree, and think that seeing things in those terms can play into the hands of the PACE trial researchers (and their colleagues). They are able to distract attention from the problems with their work by pointing to the flaws in the work of those like Myhill. PACE is junk, and there are a lot of problems with Myhill’s work, but the two are best kept as separate as possible imo. We need to fight for higher standards everywhere, not pick sides between flawed researchers.

      • Everyone in the UK who opposes the White/Wessely biopsychosocial dogma — and worse yet, proves them wrong with evidence and successful patient care — gets trashed by your medical council.Dr. Nigel Speight more recently has been banned from talking about ME at all, due to having helped a patient formerly mis-treated by yet another biopsychosocial school adherent.

  • NICE should not approve any treatment until all data is publicly available. Statins should be withdrawn from low to medium risk patients on these grounds alone. Is NICE there to represent the public or vested interests? I fear it’s a silly question.

    • Editorial

      Sounds a good idea although would get into a tangle of claims of commercial confidentiality and patient confidentiality if the news feature to the latests cfs/me results in the BMJ is to be believed.

  • At last, an intelligent and well-informed piece by a U.K. journalist on M.E. and the PACE trial! Thank you! Any chance of its being published in a mainstream newspaper? The Times article on the topic yesterday (‘Exercise and therapy cures for M.E. ‘seriously flawed”, 28th September) was very disappointing, biased and ill-informed despite promising headline.

    • Editorial

      Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth

      • That’s a sad thing to hear… though one, as patients, we’re used to hearing. But surely the ICO decision has breached that impasse to some degree?

        Thank you, however, for this excellent overview… as a patient of 46 years I am much indebted.

      • It’s not really a civil war though – it’s more like a bizarre oppressive dictatorship where everything is controlled to the dictators agenda.

        Is this the same mainstream press who didn’t investigate Jimmy Saville or the Hillsborough disaster ?

        Thanks for a great article, hope to read plenty more ! It’s refreshing to read a good article on PACE.

        Don’t forget the PACE authors links to the insurance industry still need to be explored ….

      • But there has been so much false publicity around the pace trial it more an issue of science editors not wanting to go against the Science Media Centre who have been instrumental in spinning this story in favour of the trial authors for years. https://peterkempblog.wordpress.com/2016/09/23/the-science-media-centre-and-the-pace-trial-a-deceptive-partnership/

        • Editorial

          SMC certainly seem to have played a part in the general perception that CBT does work and those who criticise it are deranged or vexatious.It also is pretty much on side with other official positions such as statins being safe and effective.

          But mainstream papers don’t avoid ME/CFS so much becasue of the power of SMC (although it may well give them a misleading steer) but because these days there are few resources put into investigating health stories – the normal pattern is to report recent publications in reputable journals backed up by senior scientific figures.

          A staff health journalist with severely limited time is likely to get badly lost trying to put together an ME/CFS story from the huge range of articles and comments on the web by patients and then to balance that with quotes from mainstream psychiatrists. So it is easier not to start.

          • Hey Jerome, why would you have to balance it with ‘mainstream’psychiatrists? Science is science, balance isn’t necessarily good if it doesn’t represent the truth, I can’t figure that one out.
            It’s like David Tuller doing a wonderful scientific analysis and then White says something meaningless and false and it gets equal prominence to an unsuspecting reader?

          • Editorial

            So you asking a journalist to make decision about whose “science” is right and who’s is wrong. Really? Balance as a principle is not perfect – but without something like that you get Fox news.

      • Please try pitching this story to mainstream press. It is important — there are 17-20 million ME patients in the world. We need help from journalists who understand and can communicate the issues.

    • I agree completely with Pamela! But it seems so hard to crack the old boy network that sustain such attitudes.

      Thanks for writing such a clear and thorough piece.

  • I was hoping you would cover this story again after your last big piece in the Guardian.

    Great article but should be in the mainstream broadsheet press possibly as a feature length. This is a major scientific, medical and financial scandal. The media usually go to great lengths to expose such scandals and am surprised as the media deal with many controversies and cover war zones without any problem!!

    I remember your article on the Chief Medical Officers report of 2002. Good article.

    https://www.theguardian.com/society/2002/mar/30/health.lifeandhealth

    It looks like Prof Hooper was right all along and there are legitimate concerns over these psychiatrists involvement.

    I would add this recent report that explains the financial and economic basis for the psychiatrists involvement in a neurological disease. Download the PDF for ‘Expectation for Recovery’ on the right. This is a must read.

    http://www.centreforwelfarereform.org/news/misleading-mability-cuts/00270.html

    I have added the open letter referred to above which was ignored by the Lancet and then resubmitted with 42 signatories.

    http://www.virology.ws/2016/02/10/open-letter-lancet-again/

    Thanks and hope you can cover this on mainstream press. It would be well received.

    • Editorial

      So impressed that you remember an article from so long ago -makes a change from “yesterdays’ papers” attitude
      Am trying for wider coverage

      • Thank you for your brilliant articles. Still need much more mainsteam publicity to highlight the tremendous uphill battle we are still facing. A BBC documentary would fit the bill nicely. Hope it happens in my lifetime. I am 63 and totally housebound by this hideous neuro/immune illness

      • Hi Jerome

        Thanks for responding to this comment and all the others.

        How could anyone forget that article. It stands out above all other articles on ME. It was good proper journalism from the old days not the regurgitated press release reports of today.

        In fact after the court case in August I was meaning to write to you with an update of the issue. It’s great that you have been aware of it and covered it.

        Great to hear your reasons why the reluctance to cover this story. I concur with your conclusion. However it would be amazing for whichever newspaper covers it for its sales. It is a bit of a vicious cycle as one of the reasons people don’t pay for media is because of the quality which reduces investment and quality journalism and so on.

        This is one of the biggest medical, scientific and financial scandals. Which ever journalist chooses to break with this story will become a household name. The public have been misled by a small clique of psychiatrists for decades. Thousands in the UK and millions worldwide have been harmed and injured medically and been caused severe financial detriment by this scandal. However in the UK media one only hears of the victim as the psychiatrist who feels safer in Iraq and Afghanistan rather than central London because of militant ME narrative orchestrated by him and the SMC which was completely rejected by the courts in 2016 as with out any evidence.

        Many with ME were successful and intelligent people who have no reason or ulterior motive to be bed ridden for decades and losing out on life.

        I have seen many a scandal recently where no-one took any notice of people alerting authorities until it was too late and the damage done. In fact this is becoming a far too common phenomenon in the UK. This was seen in the financial crisis of 2008, celebrity child abuse scandal, Hillsborough etc. It would be great to report the truth on this issue before all the players have retired or even died.

        This is a, major story and post Levinson there is no need for the media to hack any phones in this case- it is all there in black and white!

        The media should “comfort the afflicted and afflict the comfortable” but with ME it has been the opposite.

        Cheers

  • Standing ovation for this. Thank you for representing the bad science of PACE and the effect on patients in such a thorough and accurate way. From: an ME patient who did Graded Exercise in good faith and was made permanently disabled by it.

  • Thank you so much for an honest, unbiased and thorough assessment of this matter. It makes for absolutely amazing reading, I can’t understand how this has not made national papers. This story needs to be heard not only for CFS suffers but for the entire country of people placing their lives in the hands of supposed best practice medicine. It is appalling to believe even one study of such questionable quality should become the foundation for a gold standard treatment for a condition. It truly is in the public interest that this be publicised. Thank you again.

  • Thanks for a balanced article. Very restrained. The harm caused by GET and CBT to many is enormous influence severe worsening of health, loss of benefits, loss of insurance claims, stigmatisation by family, friends, the medical profession. How a country addresses a severe miscarriage of justice speaks volumes for the moral fibre of the country. It’s ability to remedy wrongs and take care of the people it has harmed.
    Looking at the proposed MEGA trial is that going to be more of the same?
    Some of the names are Wesley school proponents – what safe guards are in place for an unbiased study? How can this study be unbiased and not another very expensive attempt to prop up the beliefs of the biopyschosocial mob’s faulty beliefs?
    What entry criteria will be used for the MEGA trial- Canadian Consemsus Criteris? International Consensus Criteria??
    The idea of “inclusive criteria” ie people without ME/CFS- CCC or ICC – ME – smells off.
    It’s like running a trial on melanoma and including everyone with moles as after all there isn’t a clear line between moles and melanoma and some “inocemt moles” turn into melanomas ….. people would scream and shout if treatments to treat melanoma included people with non cancerous moles.
    Why when it comes to ME-ICC and ME/CFS-CCC is it deemed appropriate to have stuides of this severe and devastating neurological disease (with well defined diagnosis criteria and physiological symtooms as described in the CCC and ICC criteria), mixed in with any old fatigue disorder?
    There are many triggers for ME-ICC and ME/CFS- CCC but what is coming out of the USA studies is that at the cellular level the disease is remarkedly consistent with a distinct metabolic signature plus additional metabolic signatures that appear to vary between patients.
    PACE was a severely flawed study and to date we’ve not heard any whisper of an apology from the people who have upheld this misleading and flawed study.
    Will MEGA be just more of the same?

  • Has any analysis being done with the PACE data on the harm caused by GET and CBT?

  • FYI: Julie Rehmeyer is a science writer and journalist in the U.S. and not a blogger; the article cited appeared on STAT News, which is not a blog but a publication of the Boston Globe.

    • Editorial

      Thanks for clarification. Many people such as mysef,do both

  • The BASTARDS make my piss boil….what an utter fucking Con…Medical science my Arse.

  • Thanks for your post on this. It’s outrageous that Lancet allowed these authors to exaggerate their data so greatly.

  • Having just read Peter White’s outrageously dishonest defence of the PACE trial in the Guardian today, I feel even more strongly that your excellent article should be out there in the mainstream media. I appreciate your response to my earlier comment, but, judging from the many comments White’s article has provoked, it does seem that this is a hot topic deserving of a much more balanced analysis. Perhaps the Guardian would publish it in its Opinion page. It is high time that the influence that White and his associates have over the media is challenged.

    https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research

  • Hey, Jerome, Thanks so much for writing this. There is so much garbage written on ME, so refreshing to see someone in UK willing to dig deeper. I have been ill since contracting an enterovirus as a student in 1982, diagnosed by a cons neurologist in 1984 before psychiatry elbowed its way in. Can I just point out that ME stands for myalgic encephalomyelitis, not encephalitis? Many thanks.

    • Editorial

      Thanks for pointing out my confusion over the name – seems clear that “encephalitis” is wrong. But there also seems room from disagreement over “encephalomyelitis”.
      On its ‘about’ pages the ME Association website says this: Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis). I’m aware that definitions have long been an issue in this field. I am happy to be guided on this point.

  • It seems to me that we are finding more and more health conditions to have an underlying metabolic origin (root cause). This, it appears, is an indicator that the dietary changes (high bad carbs (including sugars), low unhealthy manufactured fat {all resulting in a bad gut biome}) made mandatory about 40+ years ago is becoming /has become increasingly unsupportable. A wicked and unsustainable situation where it appears that profit not your health is the primary objective.

    The wide availability of medical knowledge plus doctor to public and patient to patient communication on a massive scale (all via the internet) is raising a vociferous revolution by skeptics and patients who are increasingly refusing to bow to medical orthodoxy because medical orthodoxy is seen to be unhealthy and flawed (i.e. medical guidelines) at best and possibly with fraudulent (by some) intent. This is a massive user driven revolution that can only end badly – with many reputations deservedly discredited and in tatters.

  • It’s not easy to get this into the mainstream media in the US, either.

    Keep in mind that David Tuller is a respected independent journalist in the US and holds a position at Berkeley – but he couldn’t get that remarkable report in any regular newspapers. They wanted to cut it dramatically (which then makes it hard to understand), and they wanted the British BPS psychiatrists to have a say (and they say it’s all baloney).

    Nevertheless, he pursued the story to its end, knowing he would not see one penny of income from that work – because as a public health journalist, he believed it had to see the light of day. And Vince Racaniello, a virologist at Columbia, gave him his platform, his virology blog. So while the rather ugly story of PACE and the BPS (biopsychosocial) psychiatrists is depressing – the behavior of Tuller and Racaniello was admirable and encouraging.

    You may not be able to break through the British mainstream press, deeply enthralled by the SMC (and the influence of Simon Wessely) – but you did write an excellent article that is currently being passed around internet.

    Thank you for that.

    The sole thing that is missing is that graded exercise not only doesn’t work – it can harm patients with this disease. One of the symptoms is a worsening of the disease (usually temporary but sometimes permanent) after exertion. This has been demonstrated by researchers using CPET scores (testing the amount of oxygen used by the body and the amount of carbon monoxide expelled during peak exercise two days in a row) [Snell and Stevens, https://www.ncbi.nlm.nih.gov/pubmed/23813081 ]. UK researcher Julia Newton found excess lactic acid in ME patients. The new metabolics research suggests that ME patients are already operating with much less fuel than the normal population, and pushing them to exercise more and more is clearly dangerous. Finally, in a poll of patients with ME conducted by the ME Association, of 277 patients who underwent Graded Exercise Therapy, 70% said that it made them worse.

    So what we have here is the equivalent of a drug that was touted as curing 60% of patients, when it cured no more than a placebo – at the same time patients who used the drug suffered serious adverse events. And yet it is the main treatment for ME and CFS offered by NHS.

    This is what the MCS is hiding. Not pretty, is it?

    Ultimately, BPS psychiatrists have had their 25 years of Kuhnian paradigm hegemony – it’s really time for them to find something else to do with their time.

    But thank you again for this brilliant article.

  • Excellent article. I suspect the power of the web has come as a very rude shock to the PACE authors, who seem to still think their best defence is trying to bully and bluster people into silence and submission. Such tactics almost certainly worked before the modern information age, but – with high-integrity journalism like this – is now doomed to fail for PACE. They will keep on trying to defend the indefensible for as long as they can but, like the walls of Jericho, their flawed defences will crumble. It does make you wonder how many other, equally flawed and damaging clinical trials went unnoticed in the past. Given the attitudes exhibited by the PACE authors, what – really – are the chances it was the first?

    Maybe once PACE is fully resolved, there might be a case for looking further.

  • Thank you, those researchers in my eyes committed fraud leading to many being harmed including myself. They knew they were misleading things worldwide, they knew they were inflating their research figures and hence why they fought so hard for the data not to get out so others who would of outed them couldnt analyse it.

    Governments worldwide have based their health policies etc on this false research. Where I am in Australia Ive had doctors start preaching the PACE trial to me and I cant even get home support for ME/CFS due to the views around this illness (Ive been told to try to push myself harder) though Im extremely ill and cant look after myself well or my home so my house living environment is an unhygienic mess.

    I have faeces, urine, glass over my floors which Im not well enough to clean. I dont have support to get to doctors etc (and due to this illness need a wheelchair when out which I cant push myself) so cant even get things like my asthma dealt with and have trouble getting food etc.

    I even twice have myself into prison to escape how Im trying to currently live unable to look after myself. Others deal with not being able to take care of themselves and their homes due to damage this study has done and the disbelief its caused that our illness is a real one have committed suicide. This study and the impact its had on things worldwide certainly lead to some deaths and the impacts of this study are going to be with us for a while yet.

    Its beyond belief even when they have been caught out that these researchers are still trying to make out they did nothing wrong.

  • Rory Collins should note that the days of researchers hiding research data are numbered because WE DON’T BELIEVE YOU. Your integrity is suspect at best. Scientific method demands that data and meta data is available for independent scrutiny at a MINIMUM.

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