PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release

This is an excellent idea of Clark’s (reprinted from his blog): a way of making our feelings known about the release of the PACE Trial data. Please consider joining in.

The Self-Taught Author

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I recently wrote about the Freedom of Information (FOI) request that the Information Commissioner upheld, ordering Queen Mary University of London (QMUL) to release the data requested from the PACE trial. I provided an example of exactly what data was requested to demonstrate that the release would not include any personal identifiers of patients from the trial. I also highlighted the scaremongering of the PACE authors and their institutions that is misleading people into thinking the data is personal data when it is not. Before that, I wrote about why we must be allowed to see the data.

QMUL released a statement about the case, stating that they were seeking advice of patients, but they have not explained how this advice is going to be sought or under what conditions.

Many ME/CFS patients will obviously want to have their opinions taken into account. It is clearly a matter that patients…

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Unexplained, Misdiagnosed, Untreated

In my previous post I discussed what seems to have been a grand tradition in medicine, dating back to at least the 19th century, of assuming that any set of symptoms which is not understood or does not fit the template of an acknowledged illness must be psychological in origin. This seems to be based on the premise that everything physical is fully understood by doctors. So if a set of symptoms are ‘medically unexplained’ they can only be the result of some kind of faulty thinking on the part of the patient.

If this kind of logic had been left behind in Victorian times, it might have been thought to be quaint and perhaps even amusing. But the fact that it seems to not only survive but positively flourish in the present day is beyond a joke.

For the fact is that not everything physical is by any means understood. It never has been and it most probably never will be. Medicine is constantly evolving. More is being learned all the time. This is a good thing. So conditions that were previously dismissed as psychological in origin, such as epilepsy, Parkinsons, multiple sclerosis, even stomach ulcers for goodness’ sake, have gradually been understood to have a physical basis. And new advances in genomics and computer simulation – to name but two evolving fields – will no doubt lead to further such progress.

So if you ask yourself “are all physical illnesses fully understood even today?” you should only have to think for a moment to answer “no – of course not”.

So why is the medical profession still acting as if they are? Why are patients with symptoms that aren’t understood still automatically passed on to psychiatrists?

As I wrote that earlier post, it seemed to me that people with ME/CFS, dismissed as we so often are (in spite of evidence to the contrary) as people who are out of condition due to an irrational fear of exercise, have become the unwilling recipients of this grand tradition of blaming the patient. I was aware that others are dismissed in the same way of course: those with fibromyalgia and Gulf War Syndrome for instance. And I’m sure I’d have thought of a lot more if I’d put my mind to it, which – to be honest – I didn’t. I’m afraid most of us who are chronically ill are guilty, to some extent, of knowing a lot more about our own illness than we do about other people’s. So it wasn’t until I read the comments which people kindly left on the previous post and followed up a few leads they gave me that I realized the full extent to which the ‘medically unexplained symptoms’ (MUS) industry is flourishing in the present day. It seems that there is not so much a niggling problem with these ‘imaginary illnesses’ as a veritable plague of them. If you believe what some health professionals say – and I shall share what is said in a moment – there are more ‘imaginary illnesses’ than there are real ones. Continue reading “Unexplained, Misdiagnosed, Untreated”

Medically Unexplained Assumptions

Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—–  who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and subjected to psychological therapy,  which won’t have done very much to cure his concussion.

Charcot did not invent the concept of ‘hysteria’ but his interest popularized its use and over the years it was applied to epilepsy, multiple sclerosis, Parkinsons disease, cerebral tumours, and a great many other conditions which were not at the time recognized as the physical problems they were later acknowledged to be.

The diagnosis ‘hysteria’ is not in use today but the medical profession’s habit of labeling any patient with symptoms that don’t fit the pattern of a currently recognized pathology as ‘psychologically ill’ remains as prevalent as ever. These days, they use terms like ‘somatization’, ‘conversion disorder’, and ‘medically unexplained symptoms’ but the concept remains the same. Any set of symptoms which aren’t in the medical textbooks is assumed to be ‘all in the head’. Continue reading “Medically Unexplained Assumptions”

Message to Planet PACE

Prof James Coyne’s Freedom of Information request for data from the PACE Trial has been refused and he has shared the letter he received in explanation. It makes astonishing reading.

There have of course been numerous previous refusals concerning this data but the excuses given are increasingly desperate and unconvincing.

Prof Coyne was told: ‘The university considers that there is a lack of value or serious purpose to your request. The university also considers that there is improper motive behind the request. The university considers that this request has caused and could further cause harassment and distress to staff.’

The letter goes on to say: ‘The active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.’

The letter concludes: ‘The university considers that when applying a holistic approach, this request can properly be considered to be vexatious.’

Bearing in mind that James Coyne requested the data so that he could ‘verify the substantive claims of the article through reanalysis’, it is difficult to see why his request should be thought to ‘lack value or serious purpose’ or why it should be considered that he has ‘an improper motive’.

It is also hard to see why the PACE researchers’ apparent ‘distress’ and their fears of ‘public criticism and reputational damage’ can possibly be considered adequate justification for refusing access to their data. Continue reading “Message to Planet PACE”

Time to be Heard

Six weeks on from the infamously unhelpful article by Sarah Knapton in the Daily Telegraph, the online version of the newspaper has published an article on ME by Dr Charles Shepherd of the ME Association with a view to correcting some of the misinformation. This was part of a deal which was struck by way of redress for the Telegraph falling so short of the truth on this occasion, as part of which they also published a ‘clarification’ of their assertion that ME isn’t really a chronic illness. As the clarification stated that the study they had reported actually said no such thing, it might have been more appropriate to call it  a ‘correction’ but I suppose you can’t expect a leading national newspaper to have such a precise grasp of the English language.

As for Dr Shepherd’s article, it doesn’t appear in the print edition, this in marked contrast to Knapton’s article which was linked from the front page. We have elderly relatives who read the original article but will only receive Shepherd’s piece because we’ll print it out and send them it. Many other Telegraph readers will sadly remain in ignorance.

This sort of imbalance is pretty much standard, of course, in situations like this, and Dr Shepherd and the ME Association are to be congratulated for at least getting the deal they did. It is worth, too, saying a word or two extra in praise of Charles Shepherd, who has been performing duties like this on our behalf for the best part of three decades now, plodding time and again to the barricades to call out the truth into the no man’s land of ignorance, doubt and incomprehension, then plodding patiently back again in the knowledge that he will probably have to do the same thing all over again in an another week’s time. And another. And another. The man is a hero. We are very fortunate to have him.

We are also lucky to have ME patients such as Tom Kindlon who have been plugging away with well reasoned comments for years, slowly exposing the fracture lines in the PACE Trial and counteracting other misconceptions. Not all of us are capable of such exhaustive feats of analysis, and yet there is a growing understanding that we all have a part to play in getting the truth out there. Continue reading “Time to be Heard”

Telling It Like It Is

It’s been a gruelling and messy few weeks for those of us who try to keep up with developments in the world of ME (myalgic encephalomyelitis). On the plus side, there’s been a comprehensive and damning critique of the PACE Trial by investigative journalist David Tuller. As you may be aware, the 2011 UK PACE Trial purported to demonstrate the efficacy of CBT (cognitive behavioural therapy) and GET (graded exercise therapy) as treatments for ME, findings which have been hotly contested – and for very good reasons – by patient advocates and informed health professionals alike. Now, Tuller’s series of articles has provided an invaluable and comprehensive summary of the numerous failings of the trial all in one place for the very first time.

Then, just as the PACE researchers were firing up their response – a very damaging response, of which more soon – influential Professor of Health Psychology James Coyne joined the fray to explain the shortcomings of the latest PACE follow-up study; while in what may be the most significant PACE development of all, the Information Commissioners Office ordered the release of raw data from the trial, a move which may provide its many critics with the ammunition to finally expose the truth behind the study’s spin and bluster.

Lastly, as far as the positive side of the equation is concerned, though you could be forgiven for overlooking it amid the drama of what is coming to be known as ‘PACE-gate’, the US National Institutes of Health has announced a major new CFS/ME research initiative, the main objective of which will be to investigate ‘at a biological and molecular level’ what happens when someone develops ME following an infection. Furthermore, US CFS/ME research will now be under the wing of the ‘National Institute of Neurological Disorders and Stroke’ as opposed to ‘Women’s Health’, which seems like a more sensible way to proceed, given that men get ME as well.

On the negative side, the PACE researchers published another follow-on study, the latest in a series of number-crunching re-imaginings based on data from the trial, studies which keep the fires of PACE burning over and over again, long after reasoned argument should have extinguished them. This time, unfortunately, the fires were stoked not only by the study itself, yet another triumph of spin over substance, but by a couple of press reports from the Daily Mail and – worst of all – a front page piece from the Daily Telegraph which took the nonsense from the study and transformed it into something so outrageous, unrecognisable and – unfortunately – damaging that even Prof Michael Sharpe, lead researcher on the dodgy study itself, described the article as ‘misleading and insulting’. Continue reading “Telling It Like It Is”

How to deal with layer upon layer of misinformation?

So you think social media are really empowering.

But then you have the PACE Trial, a £5million study of ME (myalgic encephalomyelitis) largely funded by the British Taxpayer which used diagnostic criteria that included people with other conditions; which changed entry and recovery criteria mid-study so that it was possible for participants to get worse and still be classed as ‘recovered’; which jettisoned most of its objective measures of assessment mid-study because they didn’t give the desired results; which despite therefore relying almost entirely on subjective ‘tick-box questionnaire’ measures of outcome nevertheless issued a newsletter for participants mid-study telling them how well the therapies were working; whose authors claimed that these therapies (GET and CBT) led to the ‘recovery’ of many patients with ME even though their physical functioning at the end of the trial was similar to those with congestive heart failure; which has now spawned a follow-on study showing that GET and CBT are actually no more effective long term than the other therapies studied but which nevertheless is spun to give the impression of providing further proof of how wonderful they are; which in turn leads on to a front page story in the Daily Telegraph which is so divorced from any kind of reality that even the lead researcher of this latest manifestation of the mind-numbingly flawed, woefully mismanaged trial itself describes the story as ‘misleading and insulting’.

Try addressing that little lot in a Tweet.

Meanwhile the Telegraph reader looks at the front page, reads the misleading headline and, now feeling reliably informed about ME, turns to the sport…

Further reading:

An overview of David Tuller’s comprehensive critique of the PACE Trial

Sign a petition calling for the retraction of unfounded PACE trial claims