Looking at the Evidence

As you may know, a few days ago the Journal of Health Psychology published a very important special issue critiquing in depth the controversial, deeply flawed PACE Trial, a study which purported to provide evidence for the use of graded exercise and a very specific type of CBT in the treatment of ME (myalgic encephalomyelitis, also known – misleadingly – as chronic fatigue syndrome or CFS). Congratulations to the journal’s editor Prof David F Marks for taking the trouble to inform himself about the true situation regarding ME. He is one of very few scientists and health professionals who despite having no personal or pre-existing professional interest in the condition has made the effort to look at the facts and realise that – unlikely as it may seem to many – the PACE Trial and similar ‘research’ into ME by those with a fixed biopsychosocial mindset really is every bit as flawed, misleading and potentially damaging as patients have been claiming for years. Dr David Tuller, Prof James Coyne, and Prof Jonathan Edwards are other rare free thinkers who have not been afraid to get informed and challenge the status quo – or to put it another way, to point out that the emperor is naked because that is what he is.

By contrast, those who persist in defending PACE give the impression that they have simply taken the word of the PACE investigators rather than study the actual evidence. Prof Malcolm Macleod, who was trotted out by the Science Media Centre as an ‘expert’ in response to the special issue, seemed only aware of one of PACE’s many flaws and seemed to base his defence of the study chiefly on the ‘doubtful provenance’ of some of its critics. It is another example of people being judged on the basis of who they are, rather than what they say or where the truth lies.

As for Prof George Davey Smith, who left the JHP’s editorial board in protest at the PACE-related special issue, he seemed to positively gloat about his ignorance of ME at last year’s CMRC conference, this in spite of his involvement with the much vaunted though controversial MEGA study, and even referred to it as CSF rather than CFS, apparently mixing up chronic fatigue syndrome with cerebrospinal fluid.

Speaking on Twitter, David F Marks described his disappointment that George Davey Smith did not ‘offer a pro-PACE commentary instead of leaving in a huff’. He (Marks) has offered to debate with PACE supporters in a public forum at any time. I don’t suppose he’ll get any takers. That would put them to the trouble of actually sitting down and informing themselves of the true situation.

Marks, meanwhile, has studied the facts and has drawn his own conclusion. He says: ‘“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.’ To which I would add: ‘also an exercise to try to protect the reputations of a small number of health professionals who have built their illustrious careers on the back of an unproven ‘biopsychosocial hypothesis’.

Meanwhile the proponents of PACE continue to take the cream of the research money here in the UK, so inhibiting much-needed biomedical progress; unsuspecting patients are given potentially damaging courses of graded exercise; and the number of parents threatened with ME-related child custody proceedings appears to be spiralling upwards, all this fuelled by the unproven biopsychosocial hypothesis.

As The Times article reported with great relish, James Coyne allegedly called the departing Davey-Smith ‘a disgusting old fart neoliberal hypocrite’. This may seem a little harsh but if language like that helps to get the truth about PACE in the newspapers, then so be it as far as I am concerned. And in view of the human suffering which underlies the farce that is PACE, perhaps such language is restrained.

Note: David Tuller’s response to the Science Media Centre’s ‘expert comments’ on the JHP special issue is here.

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Heat of Battle

In my previous post relating to the controversy surrounding the NIH study, I wrote that disagreements were only to be expected. I still stick by those words, yet I – like many – have looked on in some distress since then as angry reactions have escalated to a potentially catastrophic extent, threatening a very serious setback in our battle to expose the PACE trial and win recognition for the true nature of ME.

I myself do not believe that anything any patient has said about the NIH study has been more outrageous than the NIH’s own decision to appoint Dr Walitt as study director. When you put this in the context of the promises made about the study after all the years of neglect and betrayal it is scarcely surprising that some patients have got very angry or that bitter disputes have arisen about how best to respond.

But we must not lose sight of what we hope to achieve. David Tuller and Professor James Coyne have built on years of painstaking work by patients to put us in reach of finally exposing the slick tricks of the PACE trial. It will be tragic if we lose that chance because of a few angry exchanges in the heat of battle.

I think we need to accept that Professor Coyne is the way he is. He fights hard and says what he thinks in no uncertain terms. That’s what makes him such a fearsome opponent for those who are ranged against us. But if we ask a lion to fight for us, we can’t be surprised if he roars in our direction from time to time. If that weren’t his essential nature, he wouldn’t have taken on this battle of ours which nobody else would touch. He has been willing to stand up for truth on our behalf. We need his support and he deserves ours in turn.

No one deserves to have been upset over this. All that anyone was trying to do was to speak up in whatever way seemed appropriate to them to achieve our common goal of true recognition, research and treatments for this devastating, misunderstood, neglected condition. Continue reading “Heat of Battle”

Keep Watching

‘Somatoform disorders’ have reared their heads in the ME-related news recently. First there was the announcement that one of the control groups for the upcoming and eagerly anticipated US National Institutes of Health (NIH) study of post-infectious CFS would be people with ‘functional movement disorder’, a strange choice which has made a lot of ME patients feel uneasy. The NIH explained: “Functional Movement Disorder was chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation.”

But why not compare us with, say, AIDS or MS patients, people have asked? Why choose these ‘functional’ patients? It is difficult to avoid the suspicion that the NIH may be secretly looking for similarities rather than contrasts between people with ME/CFS  and those with this so-called ‘functional’ disorder. And if such similarities are found, what then?

There is, after all, no proof that any condition is ‘functional’ or ‘somatoform’ or ‘psychogenic’ or whatever you want to call it – as Doctor Speedy explains here. These diagnoses are based entirely on the opinion – and in many cases, as we shall see, the presumption – of the doctor. When it comes to such so-called ‘psychogenic’ conditions, otherwise known as ‘medically unexplained symptoms’, evidence-based medicine seems to go out of the window.

So these poor people with movement disorders may have conditions which are no more ‘psychogenic’ than ME is, yet according to the NIH they have ‘clear psychological illness’. So if we have similarities with such patients, what does that mean for us in the eyes of the NIH?

Perhaps I am being unduly suspicious here. There is plenty that seems to be good about the NIH study. It is large scale, it is studying post-infectious CFS (i.e. patients whose CFS started with an infection) and there is going to be a particular focus on the cardinal symptom of post exertional malaise. Continue reading “Keep Watching”

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”