This letter from Professor Fiona Watt of the Medical Research Council in support of the PACE Trial appeared a few days ago in response to the Times article about the growing pressure on The Lancet concerning the trial:
CHRONIC FATIGUE
Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the treatment of chronic fatigue syndrome (also known as ME) was unsound. The Pace trial was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed. Other research groups have drawn similar conclusions. Chronic fatigue syndrome/ME remains a priority for the Medical Research Council (MRC), and it is important that researchers are not discouraged from working on the disease because of concerns that they could be subject to the level of hostility that Pace researchers have experienced. Medical research can only flourish when there is mutual respect between all parties.
Professor Fiona Watt Executive chairwoman, Medical Research Council
There have been other responses from patients. Here is mine, which I decided to send directly to Prof Watt.
Maybe she will see it. Maybe she will read it. Maybe she will do as I ask! I’ve sent it anyhow. You don’t win the lottery if you don’t buy a ticket…
Dear Professor Watt,
Like many patients with M.E. I was surprised and disappointed by your letter to The Times wholeheartedly supporting the PACE trial. There are so many misconceptions in the letter that it is clear that you have not investigated this matter yourself but have – apparently- assumed that what the PACE authors tell you about it is correct and what patients tell you is not. I can only assume that this is because they are doctors and we are merely patients.
Yet you say in your letter that ‘medical research can only flourish when there is mutual respect between all parties’. I would certainly not disagree with that. Please then show patients the respect of being open to the possibility that what we (and indeed many distinguished researchers and other informed parties) say about PACE may actually be correct.
I am not asking you to take us at our word, but please look into the matter yourself instead of simply believing what you are told by the PACE authors and their friends. It will not take you long. I have provided a few references at the end of this letter which you will find useful. For the sake of the patients you say you wish to respect, please take the trouble to do this.
Thank you,
Useful references:
Rethinking the Treatment of Chronic Fatigue Syndrome – A Reanalysis and Evaluation of Findings from a Recent Major Trial of Graded Exercise and CBT by Wilshire et al. – Jan 2018 (A comprehensive re-evaluation of PACE following the release of data from the Freedom of Information Act Tribunal.)
A letter to The Lancet signed by over a hundred scientists, clinicians, academics, MPs and other experts plus over sixty local, national, and international patient organisations, calling for an independent re-analysis of PACE and setting out the reasons why.
Allegations were made at the Tribunal by a representative of the PACE proponents that ME patients, described as ‘activists’ were ‘borderline sociopathic and psychopathic’ and posed ‘a serious threat of violence to trial participants and researchers’ but the Commissioner described these as ‘wild speculations’ which did the representative ‘no credit’ (see pages 22 and 36). PACE researcher Prof Chalder accepted that ‘there had been no threats made either to researchers or participants’ The Commissioner stated that the ‘assessment of activist behaviour was grossly exaggerated. The only actual evidence was that an individual at a seminar had heckled Prof Chalder.’ (see page 40)
Your letter also suggests that researchers might be ‘discouraged from working on the disease because of concerns that they could be subject to the level of hostility that PACE researchers have experienced’. The idea that researchers are being discouraged in this way is another often repeated misconception which seems to be intended to vilify patients. Working for the MRC, you will be fully aware of how little funding M.E. has received over the years. Nevertheless there is research going on worldwide, strongly supported by patients and often funded by them. (Many of these researchers are critical of PACE and have signed the letter to The Lancet requesting its independent reassessment – see above.) Patients do however object – in the form of letters such as this and other peaceful means – to the squandering of funds on poorly conducted research such as PACE, money which is desperately needed for high quality biomedical research into the condition.
Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.
The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.
Can you guess what results this trial has achieved?
Well, the researchers reported that LP combined with standard medical care produced better results than standard medical care alone. If you look at how they assessed this, the outcome was scarcely surprising. In common with other similar trials assessing ‘psychological’ treatments for M.E. (including the controversial £5m publically funded PACE trial) it was unblinded and there was very little in terms of objective assessment of outcomes. The results were almost entirely assessed using self-completed questionnaires. So in other words what they did was to tell the children they were better and then ask them if they were better. Just in case this didn’t achieve the desired outcome, remember that the children had also been told that the process would only work if they believed in it and if they didn’t recover it would be their fault.
Remember too that these were children being questioned by adults in positions of perceived authority.
Now what was that answer again, children?
Apparently we are supposed to treat this extraordinary procedure as a piece of serious science. After all, we have the science editors at the BBC and the Guardian as our role models. As with the many previous papers from the PACE researchers and their colleagues, these so called professional journalists swallow the whole thing without so much as a grimace and repeat it all back just as they have been told it, like performing parrots. The source on which they rely to tell them what to think is the Science Media Centre, a shadowy organisation which purportedly exists to provide a balanced view of science but in fact appears to promote the agenda of vested interests: in this case those who have built careers on the backs of patients with M.E., promoting their unproven psychological theories, misdirecting patients and their families, and effectively diverting funds from much-needed biomedical research.
On top of all the nonsense they spouted in Thursday’s coverage about the trial itself, these ‘journalists’ have also been coached to repeat yet again the habitual misinformation about M.E. researchers being abused by patients, apparently to such an extent that most of them have left the field altogether. This simply isn’t true. While one or two psychiatrists have announced their retirement, at least one purportedly in fear of his life, this doesn’t seem to stop them continuing to write about M.E. or, in at least one case, issuing further papers on the subject. These accusations against patients reached their peak at the Freedom of Information Tribunal which released important data about the PACE Trial. The Tribunal ruled that the accusations had been greatly exaggerated. Apparently the sole piece of evidence produced for all the so-called threats was that one of the researchers had been heckled at a lecture. In reality, while any abuse which may occur is regrettable, by far the bulk of what these researchers complain about is simply legitimate criticism about abysmal so-called ‘science’ such as the Smile trial.
Meanwhile, those scientists researching the biomedical roots of M.E., of whom there are many worldwide – though precious few in the UK where psychiatrists take most of the funding – get on extremely well with patients, who in many cases raise the money they need to do their work.
Though such research remains grossly underfunded, progress is slowly being made. As Prof Jose Montoya announced at a conference just last week, it is no longer true to say that this is a mystery illness. It is one whose pathogenesis is slowly being unveiled.
Only a small proportion of such progress is reported in the UK media. The Science Media Centre don’t tell the journalists about it and, it seems, they can’t be bothered to look for themselves.
To add to the misinformation: on BBC Radio Four’s Today programme (approx 7-50 am), lead Smile researcher Esther Crawley grossly misrepresented the patient support group the M.E. Association by claiming that they didn’t want M.E to be researched in children. In fact, their complaint was not against research for children with M.E. in general, but the Smile Trial in particular, which they considered to be unethical. I have to say that I agree with them. Children frame their view of the world at least partially according to what adults tell them, so for them to be told they are not ill, contrary to their own perceived experience and to what is now understood about the physical reality of this neuroimmune condition, appears to be a betrayal of their trust. Research evidence by VanNess et al, among others, strongly suggests that it is harmful for M.E. patients to ignore the way they feel and push themselves beyond their capability. This can bring about a long-term deterioration in their condition. Unlike adults, children have a good chance of making a full recovery if they are simply allowed to take the rest they need. To encourage them to ignore the way they feel, as does the lightning process, is therefore particularly unfortunate. It can push children who might otherwise have recovered into a lifetime of chronic illness.
This is not the only potential damage to children. Others have been driven into anxiety and depression under the pressure of being made to act as if they are well when they are not. Some have even attempted suicide under the strain of this.
“I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’. “
How many more children will be subjected to these various forms of harm following Thursday’s inaccurate coverage? And how long will it be till UK journalists start reporting M.E. responsibly?
The conversation on this You Tube ‘video’ took place on BBC Radio 4’s PM programme on 11th July 2017 when Andy Burnham, prompted by host Eddie Mair, proposed the adoption of a ‘Hillsborough law’ to shift the balance in the many instances where ordinary people bring genuine complaints but are dismissed and even denigrated by the establishment. He described the latter in terms of a cosy network of relationships between high ranking people in public bodies and the media. Burnham, a former Health Secretary and now Mayor of Greater Manchester, was speaking after the announcement of an inquiry into the massive blood contamination scandal which cost the lives of over 2400 people who received transfusions in the UK in the seventies till the nineties. He compared this to other scandals such as the Hillsborough disaster, in all of which the complaints of those involved and their families have been dismissed and ignored for decades.
I’m sure there are many other examples of such injustices. Hopefully the recent Grenfell Tower disaster will be dealt with more swiftly.
The conversation reminded me of an issue in which I am very much involved, that of ME (myalgic encephalomyelitis), also known – misleadingly- as CFS (chronic fatigue syndrome). This may seem like a trivial issue compared to the others I have mentioned, but therein lies the primary injustice. Unfortunately the term ‘chronic fatigue’ gives the impression of patients who are just ‘tired all the time’ so this is the view that many people have of this condition.
The truth is that the lives of people with ME are more severely impacted than those with a great many other illnesses including MS, HIV, and congestive heart failure. They suffer with a wide range of symptoms, far more than just fatigue. Even those who are ‘moderately affected’ are severely ill by any normal standards, while those termed ‘severely affected’ are often confined permanently to bed, in continuous pain, unable to sit up, tolerate light, or even communicate with their loved ones. To make matters worse, the sicker they become, the less medical attention they get. Doctors don’t understand the condition or know what to do, so they just stay away. Many people have died from ME, though this is rarely acknowledged by the authorities.
ME has been trivialised by the medical authorities for decades, notably by two British psychiatrists who studied an outbreak of the illness at the Royal Free Hospital in the fifties and concluded that it had been due to ‘hysteria’. The only ‘evidence’ they cited for this was that most of those affected had been female.
The misconception that ME is a mental health issue has persisted over the years, in part due to what has seemed to be the deliberate intention of those in authority. They have spread this confusion by adopting the trivialising name ‘chronic fatigue syndrome’ and also by using a wide range of mutually contradictory diagnostic definitions. Many of these are so vague that they include other, less serious, forms of chronic fatigue which therefore get lumped in together with ME. This has led to inappropriate ‘therapies’ such as GET (graded exercise therapy) and CBT (cognitive behavioural therapy) being recommended for ME.
CBT can be a helpful therapy to assist patients to live with a wide range of physical conditions but its most common use in CFS/ME is very different. It is used to convince patients that there is nothing physically wrong with them and that all they need to do is to slowly increase their level of activity (using GET) and they will recover. This approach may be moderately successful for some forms of chronic fatigue (such as that due to depression) but it is likely to be extremely damaging for ME. It flies in the face of research evidence which has revealed substantial physical abnormalities and an abnormal response to exercise. It also runs contrary to numerous patient surveys which report that GET makes many ME patients considerably worse, sometimes permanently so.
It is interesting to note that the PACE Trial, a large scale UK study which purported to illustrate the efficacy of CBT and GET for ME, was part funded by the DWP (Department of Work and Pensions) who are of course responsible for the payment of sickness benefits but are not normally involved in funding medical research. This draws attention to the fact that the governmental authorities have a vested interest in ‘proving’ ME to be a minor condition which responds well to short courses of relatively inexpensive ‘treatments ‘ like CBT and GET – even though this approach contradicts research evidence.
The PACE Trial itself has been a subject of substantial controversy, concerned patients having discovered a great many irregularities, the most astonishing of which was the change of patient entry criteria after the trial was started, thereby allowing patients to be ill enough to enter the trial, deteriorate during it, yet still be classed as ‘recovered’ at the end. This has naturally resulted in an upward distortion of the success rate.
PACE, in common with other research into ME/CFS by related researchers, contains a great many such defects, any one of which could have resulted in failure in a high school practical exam. Concerns have prompted more than forty eminent doctors and researchers who work in the field of ME/CFS to write to The Lancet, the journal which published the original PACE paper, calling for an independent review of the study.
A substantial critique of PACE’s many defects has been produced by the investigative journalist and public health lecturer David Tuller, who has also produced critiques of other studies by related researchers. A list of links to these articles can be found here. Building on the initial work of concerned patients, Tuller demonstrates glaring errors in these studies, yet the researchers and the supposedly reputable journals which publish them have responded to such criticisms with dismissive, unconvincing replies or else no response all.
As Andy Burnham suggested on the radio, there is a cosy network of people in authority who close ranks to defend each other against the criticisms of ordinary people. He mentioned politicians and the media but unfortunately – though it might damage the career of a politician like Burnham to suggest it – this is equally true of the medical profession. The PACE researchers seem to believe so strongly in their own preconceptions that they see nothing wrong in they or their colleagues ‘tweaking’ their studies to get the result that they believe to be the right one, and their friends in high places have such confidence in the integrity of their clubbable friends that they defend them without question, not feeling there is any requirement to take a look at the actual facts of the matter.
Part of their strategy – again as Burnham suggested – is to denigrate those who try to hold them to account. Patients had to fight hard to get vital data from PACE released under the Freedom of Information Act and met with vilification from the researchers for trying to do so. They were accused of making ‘vexatious’ requests for information, of ‘harassing’ the researchers, and even – in their attempts to unravel the complex sleights of hand that had been employed to get the researchers the results they wanted – of having ‘obsessive attention to detail’. At the FoA Tribunal which eventually ruled that the data should be released, patients were accused of presenting ‘a serious risk of violence to trial participants and researchers’ but this was deemed by the tribunal to be ‘grossly exaggerated’ and the ruling noted that the only evidence presented of such ‘violence’ was of one of the PACE researchers being heckled at a lecture.
Patients feel intense frustration that in spite of all the work done to expose the shortcomings of PACE and associated studies, they have not been retracted, and GET and CBT remain the recommended ‘therapies’ for ME/CFS in the U.K. Furthermore one of the PACE researchers’ associates – herself the source of numerous flawed and misleading papers on the condition – is now giving lectures in which she routinely vilifies the patients who question her research and accuses them of being ‘anti-science’. In view of the quality of the research in question, this is beyond irony.
Sadly, the cosy network even extends as far as some of the organisations which supposedly exist to further the interests of patients. The two main national organisations belong to a research committee whose Vice Chair gives the lectures mentioned in the previous paragraph and who seems to believe that severe ME in children is really ‘pervasive refusal syndrome’, a mental health condition for which no evidence exists. The use of this alternative diagnosis can lead to children being taken away from their parents and forcibly given a course of GET, even though this is not recommended for the severely affected and can result in severe disablement.
One of the patient organisations, Action for ME, has supported and enabled the PACE Trial itself, supposedly being involved to support the interests of patients yet singularly and spectacularly failing to do so. Increasingly, the patients whose financial contributions enable these organisations to exist are complaining about their actions and the company they keep – but sadly the cosy network described above seems to extend to their trustees and celebrity patrons, who themselves prefer to support those in authority rather than patients.
So yes, in the case of ME, we patients feel that the odds are stacked against us. A Hillsborough law would indeed be useful. As things stand, we ordinary patients seem to have very little power against the network of those with vested interests who believe that they and their friends must be right because of who they are. We have the truth on our side and we have the evidence to prove it – but that does not appear to be enough.
A quick PS: The national patient organisation I didn’t mention by name above is the ME Association. I would like to make plain that I have a great deal of respect for their work and that of their Medical Advisor Dr Charles Shepherd, who much of the time do a very good job of representing our interests. An example of this work is their recent petition to NICE regarding the decision not update the guidelines on ME/CFS (do consider signing if you haven’t already – this is important). However, MEA’s decision to stay in the CMRC and continue to work with those who malign patients and whose research contributes further misinformation about ME seems to me – and to many other patients – to be a serious error of judgement. They really should listen to the voice of informed patients.
PPS Sorry my first YouTube video isn’t exactly a multimedia extravaganza. It’s been a steep learning curve. Many thanks to Nigel B for helping me get as far as this.
Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response to criticism from a doctor who got in touch to say:
“Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any complaint you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME, where any suggestion that there might be a psychological or social component leads to criticism. That CBT is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”
It does become tiresome having to deal with such ‘arguments’ time and time again. Once upon a time it was ‘yuppie flu’ that popped up in every article about ME. Now, at long last, that is slowly fading away. Yet now we have to deal with this endlessly repeated idea that ME patients have an unreasonable and unsubstantiated resistance to any suggestion that there might be a psychological component to our illness. People with cancer are happy enough to go for CBT, we are told. So what’s our objection? Continue reading “Spreading the Word”
Over the past 48 hours, many patients have been expressing concern about the involvement of Prof Peter White in the proposed MEGA biomedical ‘big data’ study of ME/CFS. It seems extraordinary that someone who believes in the simplistic ‘fear-avoidance’ model of ME/CFS should even wish to be involved in this study. Of what relevance is psychiatry to genomics?
Then, yesterday, came a timely reminder of why we can’t allow Prof White anywhere near this project. His Guardian article in defence of PACE was an extraordinary illustration of a) his refusal to accept the truth about his fatally flawed research and b) his determination to say whatever it takes to try to defend the trial, however much deceit this may involve.
It has long been obvious to those who have studied PACE that the trial involved blatant trickery, juggling outcome measures to produce the results they wanted, but these deceits were not always obvious to those unschooled in statistics and/or without the time to sit down and read through the details. Just recently, however, as the whole PACE edifice comes closer to collapse, the lies seem to be getting both more desperate and more transparent. Yesterday’s article contains a real transparent whopper, but I’ll work through the piece in order, saving the whopper for last:
White dismissively mentions an earlier post which claimed that sexism was part of the cause of ME patients’ mistreatment. He must surely be aware, however, that McEvedy and Beard, the two psychiatrists who first claimed ME to be a ‘hysterical’ condition cited ‘the high attack rate in females compared with males’ as part of their argument. Sexism therefore certainly played a part in the emergence of the PACE authors’ view of the condition.
White goes on to make several mentions of ‘fear’ among patients. “The idea of exercise was scary for some patients” he writes, though he seems to have forgotten his own 2005 study which demonstrated that “CFS patients without a comorbid psychiatric disorder do not have an exercise phobia”.
White speaks disparagingly of the newspaper articles which followed the various PACE announcements, accepting that headlines such as “just get out and exercise, say scientists” were harmful and misleading. At the time, however, he and his fellow PACE authors did little or nothing to try to correct such coverage. Furthermore, these very articles were written by journalists who had been briefed by the Science Media Centre, the shadowy organisation purporting to support “balance” in science reporting, which in turn was briefed by the PACE authors themselves and their associates.
White continues to quote his figure of 22% for ‘recovery’ in patients receiving GET or CBT, making clear that by ‘recovery’ he really means ‘remission’. (This was another sleight of hand. White and his fellow authors failed to correct media reports which – not unreasonably – assumed that ‘recovery’ meant ‘recovery’). Yet those of us who have been following the PACE saga know that the 22% result no longer stands. Alem Matthees, Tom Kindlon and their colleagues have shown in their reanalysis that the true result is only 7% for CBT and 4% for GET, a statistically insignificant outcome, being scarcely above the 3% figure for standard medical care which everyone on the trial received anyway (including those on CBT and GET.)
This leads on to the whopper, for White gives the impression in the Guardian article that Matthees and his team got their result by playing around with the figures. The implication is that this was a fiddle. In actual fact, of course, Matthees used the original trial protocol which White and his colleagues had said they would use but changed when (we can only assume) it failed to give them the results they wanted. Yes, there was fiddling going on, but it wasn’t Matthees that was doing it.
White must know that Matthees was using the original protocol. This was explicitly why Matthees requested the data – because White and his team had protested they didn’t have time to do the calculations themselves. White must have sat through – or at least paid close attention to – the Freedom of Information Tribunal which issued the order to release the data. It can’t have escaped his attention that it had been requested specifically to reanalyse the figures according to the PACE authors’ own original protocol. Yet in the Guardian article, White gave the impression that Matthees and his team had simply been making random tweaks to fiddle the figures. The only possible explanation for why he wrote it like that was to deliberately mislead Guardian readers. He must have known better. He did know better. He was telling a barefaced lie to try to save his reputation.
I’m sorry. A man who will do something like that is not to be trusted. It is totally unreasonable for the ME organisations who are supposed to be protecting patients’ interests to think it is OK for him to be involved in an important piece of biomedical research into this illness. Why they even talk to him any longer is beyond me. It is high time we move on from PACE – and move on from Peter White. We’re really suffering here. We deserve better.
Note: I’ve been asked to include details of ‘unsigning’ in case you previously signed the MEGA petition and wish to un-sign pending further information about the study. I covered it here
We’ve had to put up with decades of nonsense about ME in the press but today’s Guardian article by Peter White of the PACE Trial has to be the worst I’ve seen. It wasn’t easy to leave a comment on the article while shaking with anger but I did my best. Here’s what I wrote. I’m pleased to say that many others were making powerful points at he same time.
Following the recent release of data from Peter White’s PACE trial (by order of a Freedom of Information tribunal, £250,000 having been spent in attempting to stop it) PACE has finally been revealed as the travesty of the truth it always has been. Rather than give the appropriate heartfelt apology, however, Prof White continues in denial.
The blog to which he disparagingly refers was written by patients who have used energy they can ill afford to spend in a David-and-Goliath struggle to reveal the truth about this reprehensible study. With the aid of expert statisticians they have not distorted the figures, as Prof White implies. What they have done is to use the newly released data to analyse the results in line with the trial’s original protocol, which White and his fellow authors originally declared they would use but then changed their minds as it didn’t give them the outcomes they wanted. They never gave a satisfactory explanation for this change but it now seems pretty obvious why it happened. The newly reanalysed results show that GET and CBT are of no more use than a placebo. They are worthless for ME/CFS, but White and his associates refuse to admit it as they have built their life’s work on these therapies. Therapies which, moreover, have been shown to be harmful for patients with ME/CFS in numerous surveys. Patients have ended up housebound or bedbound for years on end because of the efforts of White & Co, but still they refuse to admit they have done anything wrong.
This change of protocol was only the tip of the iceberg in terms of the study’s shortcomings. The Criteria used to select subjects for the study included patients with other fatigue conditions; the numerous changes in protocol meant that patients could be ill enough to join the study, deteriorate during it, yet still be classed as ‘recovered’ at the end; objective outcome measures which actually measured patients’ abilities were abandoned in favour of questionnaires; conflicts of interest on the part of the investigators were not disclosed to study participants, the list goes on and on…. In years to come, PACE will be used as an example of how NOT to conduct a research study.
P.S. The most complete analysis of the many shortcomings of the PACE trial is by David Tuller. The article, Trial By Error, is in several parts. There are links to all of them here. If you just read the summary though, at the opening of part one, that tells you a lot.
Following my earlier post about the tenuous argument put forward for the recent PACE Trial Freedom of Information Act refusal, I’ve been digging a bit deeper and I think it is now absolutely clear that the ‘evidence’ cited in the refusal notice totally fails to support QMUL’s case. It also appears that it has been deliberately quoted out of context by QMUL to create a misleading impression.
Just to remind you, here is my summary of the argument used for refusing the request:
“The argument seems to go like this: in spite of the fact that this specific request is not onerous and in spite of the fact that the complainant has not previously made an FOI request, he has been adjudged to be part of a coordinated campaign to discredit PACE (because he has talked to other people about PACE on the internet). Therefore the issue has been judged not on this specific request but on the overall burden of PACE-related FOI requests on QMUL, which are accepted not to be overwhelming but have nevertheless caused ‘disproportionate irritation and stress’ to Prof White and his team and are therefore vexatious. Therefore the request for this important piece of information is refused.”
What got me looking at things more closely was this comment by Chrisb on the Phoenix Rising forum in response to my post:
“Mr Spoonseeker has referred to and dealt with the point about the sheer weight of requests but I think there is another point.
“The Guidance apparently states that “if a public authority has reason to believe that several different requesters are acting in concert as part of a campaign to disrupt the organisation by virtue of the sheer weight of FOIA requests being submitted……”
“This guidance appears to be primarily, and quite reasonably, directed at and applicable to an entirely different type of campaign where the object is to bring about the disruption of the organisation, rather than a bona fide attempt to obtain information. Has any evidence been presented with the purpose of demonstrating that the requesters intent was disruption of the organisation of QMUL rather than obtaining the information which we believe to be the real object of the request?
“Given the Commissioner’s acceptance that this particular request on its own would not impose a significant burden, the onus of proof to establish whether the person was acting in concert with others, whose intent was disruption, ought to be significantly higher.
“In order to show that the request constituted part of a campaign one might expect it to be necessary to adduce evidence of a campaign predating the request. It seems to me that the examples quoted by QMUL probably were made after the request and in response to the initial refusal. Alternatively one might attempt to show a link to subsequent requests, but as I recall it there was no such attempt.”
spoonseekerdotcom 
Following the recent release of data from Peter White’s PACE trial (by order of a Freedom of Information tribunal, £250,000 having been spent in attempting to stop it) PACE has finally been revealed as the travesty of the truth it always has been. Rather than give the appropriate heartfelt apology, however, Prof White continues in denial.
The blog to which he disparagingly refers was written by patients who have used energy they can ill afford to spend in a David-and-Goliath struggle to reveal the truth about this reprehensible study. With the aid of expert statisticians they have not distorted the figures, as Prof White implies. What they have done is to use the newly released data to analyse the results in line with the trial’s original protocol, which White and his fellow authors originally declared they would use but then changed their minds as it didn’t give them the outcomes they wanted. They never gave a satisfactory explanation for this change but it now seems pretty obvious why it happened. The newly reanalysed results show that GET and CBT are of no more use than a placebo. They are worthless for ME/CFS, but White and his associates refuse to admit it as they have built their life’s work on these therapies. Therapies which, moreover, have been shown to be harmful for patients with ME/CFS in numerous surveys. Patients have ended up housebound or bedbound for years on end because of the efforts of White & Co, but still they refuse to admit they have done anything wrong.
This change of protocol was only the tip of the iceberg in terms of the study’s shortcomings. The Criteria used to select subjects for the study included patients with other fatigue conditions; the numerous changes in protocol meant that patients could be ill enough to join the study, deteriorate during it, yet still be classed as ‘recovered’ at the end; objective outcome measures which actually measured patients’ abilities were abandoned in favour of questionnaires; conflicts of interest on the part of the investigators were not disclosed to study participants, the list goes on and on…. In years to come, PACE will be used as an example of how NOT to conduct a research study.