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’.

As if this wasn’t bad enough, Sir Simon Wessely, current President of the Royal Institute of Psychiatrists and godfather to the PACE Trial; and Rod Liddle, shock-jock journalist, both waded in with their own opinions to further fan the flames. If you didn’t know better you might have seen this as a co-ordinated attack in response to Tuller’s critique. Some might have been surprised by Wessley’s article in particular, as he had previously announced his retirement from the field of ME following the widely publicised death threats he has claimed to have received from ME activists. So either he is a very brave man or – conceivably – the death threats were exaggerated.

Such reported threats against researchers and the supposedly fractious nature of ME patient activists seem to feature strongly in media coverage of the condition, some journalists apparently believing that the suffering of these unfortunate academics is of greater public concern than that of the hundreds of thousands of people who have had their lives wrecked by ME, some 20% or more of them housebound or bedbound, many too ill to tolerate light or communicate with their loved ones, suffering helplessly while the research funding which might conceivably lead to treatments for their complex, physical, multi-systemic condition goes to psychiatrists.

An article on the Mosaic Science site which appeared the other day is not untypical. It paints a picture of ‘irrational patients’ who have ‘a total objection to anything psychological’. Apparently ‘anyone studying the disease is at risk’, even Consultant Paediatrician Esther Crawley, who says she was accused of ‘abusing children’. The patient community, we are led to believe, is out of control, turning on the very researchers who are trying to help them.

Well, I myself have been a member of this community for some years and my experience has been a rather different one. I have found that a great many patients seem more than happy to accept that their illness causes them psychological problems, just as tends to be the case with other long term physical conditions such as Multiple Sclerosis and Parkinsons Disease. If you have ME, your symptoms and your level of functioning vary from day to day, even from hour to hour. You can never embark on any task in the confident knowledge that you will be able to finish it. Your friends and family can rarely comprehend what you are going through and urge you on to efforts you know are beyond you. If you do too much you know that there is a danger of relapse. If this happens, you don’t know how long the relapse will last. It may be days, weeks, months or even years. This seems like an exaggeration and yet it is nothing more or less than the truth.

So yes, there are often psychological complications. How could there not be in such circumstances?

The reason why ME patients react so badly to the researchers who try to impose treatments such as GET and CBT, which are normally associated with mental health conditions, is not because they have a problem with such conditions. It is because they are inappropriate for ME. Because the research which purports to prove their efficacy is riddled with flaws, many of which by themselves would be enough to invalidate the research. Taken together, these flaws should be sufficient to reduce the research to ridicule. Only the high professional standing of the researchers involved serves to stave off such derision and maintain the illusion of ‘excellent science’, just like the fabled Emperor who managed to pass off his nakedness as a fabulous suit of clothes.

The use of GET and CBT for ME is based on the idea that people with ME have nothing physically wrong with them but are simply suffering from an unhelpful illusion of illness which keeps them locked in a cycle of inactivity and deconditioning. All they have to do to get out of this, so the story goes, is to let go of this illusion and slowly increase their level of activity until the deconditioning is overcome. The objection which people with ME have to this is nothing to do with a fear of the stigma of mental health. It’s because it simply isn’t true. There is ample evidence that people with ME do have something physically wrong with their bodies – and the experience of many patients who are persuaded to try GET is that far from overcoming the condition it makes them very much worse, sometimes permanently so. Their objection is not one of ‘irrationality’ but quite the opposite: it is a rational objection to a simplistic unproven hypothesis.

As for Esther Crawley, her current study involves the Lightning Process, something which has many similarities with CBT and GET. At its heart lies a technique which is used to persuade patients to ignore their symptoms and press on regardless as they slowly increase their level of activity. As with GET, there is anecdotal evidence that patients using this process can be made very much worse instead of better, sometimes permanently so. What causes particular concern is that Crawley, being a Paediatrician, is using children as her subjects. So it seems to many that the future healthy life of these children is being put at risk in this study. ‘Child abuse ‘ is a strong term and not one I would use myself, but you can see how some people – particularly those with direct experience of being made worse by the same or a similar process – might think it appropriate here. Is it irrational and irresponsible to make such an accusation in such a context? I honestly don’t know the answer.

What I do know is that death threats and the like, if such things have indeed been used, have done nothing to further the cause of finding a cure for our condition. They are not only grossly reprehensible in themselves, they provide unhelpful subject matter to divert the media from what should be the primary focus of how to discover the truth about ME.

I have to say, though, that I haven’t encountered any evidence that such threats have actually been made. This latest article in Mosaic Science repeats the story that Sir Simon Wessely ‘left the field of ME’ because of these threats. Yet he readily chats quite happily to ME patients on Twitter. As part of one recent such amicable exchange, he tweeted photos of the meal his family were cooking for dinner. I personally think it’s great that we can have such banter with our ‘enemies’, but Sir Simon’s behaviour doesn’t strike me as that of a man in fear for his life. And now, right in the wake of the recent front page Telegraph article, with feelings in the ME Community running higher than for many years in response to its outrageous misinformation, Sir Simon chooses this very moment to wade back into the ME arena, making himself a target for what is said to be the irrational baying mob of the ME Community. Yet he doesn’t seem to be worried. I wonder why that is?

The crux of the matter, surely, is that there are difficult people out there in social media. Everyone knows that is the case. So why should the ME community be any different? Having briefly dipped my toes into party political tweeting, I can vouch for the fact that the ME community are – by and large – politeness itself in comparison.

When you consider what we have to contend with, this is quite remarkable. There is the illness itself with its gruesome array of symptoms, an illness which – at best – requires you to build a life on foundations of shifting sand, and at worst reduces you to total and utter helplessness. There is the disbelief of family, friends, employers, and society at large; there is a medical profession which by and large ignores you, and the worse you get ignores you all the more; and top of all this there are those researchers who have built careers on the unfounded assumption that there is nothing physically wrong with you, who seem to feel they can get away with all manner of truth-bending statistical improprieties to keep themselves in a job, who spin their results to reflect the outcome they wish to find, who see their already spurious findings misrepresented in the media yet make precious little effort to correct such misinformation, in spite of the damage they know this must do to the patients they say they are trying to help. And in response to all this, what do we patient activists do? By and large, we write polite, reasoned, well-crafted comments attempting to pick through layer upon layer of misinformation to expose the truth. We do this time and time again, hoping that eventually those in power will pay attention for long enough to see that we are telling the truth. A few may resort to abuse. I don’t know – I haven’t seen it. It’s sad if happens. It’s unhelpful if it happens. But really: is it any wonder?

There are some of my friends in social media, people I respect, who say we should stop criticising the PACE Trial, that it represents the past, that we should concentrate instead on the more positive developments which are coming from America and even – in a few cases – from Britain. They say that to keep banging on about PACE only encourages those who are prone to spouting abuse. But it seems to me that such people will sound off anyway. Surely that is all the more reason for those of us who use reasoned arguments to do our best to get them out there?

I really wish the PACE trial would fizzle away into the irrelevance it will one day become. But for the time being, that doesn’t seem to be happening. In his latest article on PACE, Simon Wessely says ‘there are more trials in the pipeline’. It is not clear whether these are new trials or more follow-ups to PACE. Either way, we can rest assured that the media be primed to publicise them prominently – and it seems equally likely that they will be used as a launchpad for further misinformation about ME – whether by design or incompetence or both.

It seems to me we must do all we can to stop this behemoth of misinformation in its tracks. Articles such as Sarah Knapton’s front page in the Telegraph, spawned by the recent PACE follow-up study can literally wreck the lives of people with ME by undermining their relationship with friends, family, employees, and – yes – the medical profession, who are sad to say just as likely to take their information about ME from the Telegraph headlines as from the medical press, not that the latter are very much better informed.

As I bemoaned in my previous post, it is very hard to pick away at the many layers of misinformation which overlie the PACE trial, follow-up studies, and attendant coverage. The ME charities did the best they could to firefight the recent assault, but they were able to do no more than refute the ridiculous claims of the Telegraph: to explain that CFS is indeed a chronic illness, that CBT is not the same as ‘positive thinking’, that GET is not just random exercise but (when done ‘properly’) a carefully controlled programme. There was no time left to refute the study itself: to explain that GET is potentially harmful even when carried out ‘properly’ (which I suspect it frequently isn’t); to argue that the results as announced were spun to reflect the PACE agenda; that what they really showed was something entirely different, that CBT and GET were no better long term than the other therapies trialled.

Chief researcher Prof Michael Sharpe was happy to denounce the Telegraph coverage as ‘misleading and insulting’ when he appeared on TV. Very happy indeed, because he was grinning away to himself as he did so, perhaps aware that the smokescreen had done its work. In the space of a TV interview, you can only peel away so many layers of lies.

But the situation is not hopeless. We need to keep chipping away. I was very pleased to see the article by the Telegraph resident doctor James Le Fanu which appeared a few days ago. OK, so it wasn’t on the front page like the Knapton article was. It didn’t redress the balance. But many people will have seen it and some will have taken it in.

Le Fanu wrote: The researchers may be persuaded by their optimistic conclusions, but Telegraph readers certainly are not, as is clear from the impressive number (more than 1,200) of highly critical comments posted online, drawing attention to, for example, the remarkable absence of any measurable criteria for assessing what “recovery” entailed. It is far too good to be true to suppose that positive thinking and graded exercise should reverse a debilitating illness that… can last for decades – and it would be good to think the sheer implausibility of asserting otherwise could be the last hurrah for the psychological explanation for post-viral fatigue.

He also wrote: ‘Having reviewed all the medical evidence on chronic fatigue over the past 50 years, the Institute of Medicine advised it be classified as a physical brain disorder’.

OK, so he calls it ‘chronic fatigue’ rather than ‘chronic fatigue syndrome’ but you can’t have everything.

I find this heartening stuff. He has clearly read at least some of those 1200 plus comments and seems to be persuaded by what they have told him. OK, so perhaps the Telegraph is just scared of losing 1200 readers but even that is a victory of a sort. Without those letters – without 1200 people with ME and their supporters staggering to their keyboards to tap out the truth – that article would not have appeared. We can make a difference. We have to keep telling the truth. Politely. Calmly. Painstakingly…

…until we get there.

Notes

1. One of the problems with Graded Exercise Therapy (GET) is that it is a programme of exercise which is sometimes imposed rigidly on the patient by the therapist. If done ‘properly’, as used in the PACE Trial , the exercise programme is supposed to be flexible and applied in consultation with the patient. However, harm can still occur because the underlying assumption is that there is nothing physically wrong with the patient (other than deconditioning due to excessive rest). This is my understanding of things. However, this distinction is rarely discussed and I haven’t experienced GET myself, so I should be very interested to hear feedback from those who have undergone GET themselves.
2. Cognitive Behavioural Therapy (CBT) was used in the PACE Trial to convince people with ME that there was nothing physically wrong with them (other than deconditioning due to excessive rest). This is the form of CBT to which ME patients object. However, CBT can also be used in a different way to assist people with ME in using pacing to manage their illness by helping them drop feelings of guilt, the need to people please etc. I have received this form of CBT myself at one of the NHS CFS/ME clinics and found it useful.

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