Action for ME has now joined the ME Association in asking for the release of data from the PACE Trial. This is a very encouraging development. Well done to all who wrote in – and to Clark Ellis whose blog encouraged us to do so.
Action for ME have supported PACE in the past and let down their members and ME patients in general very badly in the process, but they are now under largely new leadership, with a new CEO and new Medical Advisors. The contributions of CEO Sonya Chowdhury in the media have been noticably more robust in recent months and her profile page on their web site speaks of ‘a bold and ambitious agenda for change’.
There are those who will not forgive Action for ME for their past mistakes but, like it or not, they are frequently called upon for comment by the media and it seems to me that it is in the interests of people with ME to have an Action for ME that is on our side, which is stridently putting our case with our support, rather than one we perceive to be our enemy.
According to the Feb 12th statement by the AfME Board of Trustees, “The Board is continuing to consider Action for M.E.’s position on the PACE trial and related issues more widely, and will make a further statement in due course”. So it seems to me that this is a good time for ME patients to let them know what we would like this position to be. I have just sent them a message to this effect which I have pasted in below.
Please consider contacting Action for ME yourself, especially if you are a member. Feel free to reproduce my message, in part or in full, though if you have the spoons available to write in your own words, then so much the better. I don’t think the message has to be long or complicated: perhaps the shorter and more to the point it is the better. Not everyone is as long-winded as I am! I strongly suggest that you keep it polite and supportive though, however annoyed you maybe with AfME’s previous actions. Anger can get in the way of the message. The truth is powerful enough by itself.
My message follows:
Dear Ms Chowdhury – I am writing to thank you and Action for ME for joining your voice to those who are asking for the release of the PACE Trial data. Continue reading “Action for ME and the PACE Trial”
This material will not be new to most regular readers but I wanted to share with you a letter I have just written to Brian Appleyard of the Sunday Times. It’s no good giving a link because it will be stuck behind their annoying paywall but what he said (in passing, as part of a book review) was:
“Chronic fatigue syndrome (CFS), for example, can be relieved by cognitive behavioural therapy. Oddly, some CFS sufferers don’t want to hear this because it implies their affliction is ‘all in the mind’. Perhaps they should realise that ‘all in the mind’ is rapidly becoming an obsolete or even meaningless diagnosis.”
All in all, it was quite a good piece about the power of placebos but what concerns me is that this misinterpretation of our objection to CBT is becoming widespread, to the extent that it just keeps on getting trotted out as a given without any question as to where it came from or whether it’s true. This is my own little modest attempt to hold back this tide of repeated misapprehensions:
Dear Bryan Appleyard,
I usually enjoy your contributions to the Sunday Times so I was disappointed this weekend when you repeated the assertion (which seems to be widespread in the media these days) that people with CFS object to CBT ‘because it implies that their affliction is all in the mind’. As you say, ‘all in the mind’ is pretty much meaningless given what we now know about mind and body. It makes no sense to separate the two – indeed it never has done. Yet to be honest this misguided concept is perpetuated as much by the medical profession itself as by anyone else these days.
But the reason those of us with CFS (or ME, to use the less misleading name) object to the use of CBT is nothing to do with this. It is because the primary use of CBT in ME/CFS treatment is to try to convince patients to push on and increase their level of activity in spite of worsening symptoms. If only it were possible to do so! Unfortunately the primary symptom of ME/CFS is post exertional malaise, a worsening of symptoms in general following even modest levels of activity. This has been demonstrated by the work of Prof Mark Van Ness et al, who measured a deterioration in the exercise capability of patients with ME/CFS on the second day of testing. Continue reading “Letter to Sunday Times”
Does Esther Crawley’s latest research really tell us anything about the prevalence of pediatric CFS/ME?
After a quiet time over the holidays and into the new year, ME/CFS has been back in the news again. This time the coverage has in many ways been rather helpful. Dr Mark Porter, writing in The Times painted quite an accurate portrait of the condition: usually starting after an infection; involving numerous symptoms rather than only fatigue; the fatigue itself “persistent and recurrent”; and “exacerbated by physical or mental exertion”. There was even a description (though not by name) of the all-important post-exertional malaise. Pacing was also well described: “some of the strategies are counter-intuitive”, “it is important to avoid the boom-and-bust cycle”, only the exhortation to avoid daytime sleep seemed to me to be off the mark: in some situations this is a useful strategy to restore natural rhythm but in my experience as a patient it’s not always feasible or desirable. Nevertheless I liked Dr Porter’s perspective on the possible psychological repercussions of having ME: “feeling awful for months on end will dampen the spirits of the hardiest person” and severe ME at least gets a mention: “when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)”. Not that the hospital is likely to have a clue what to do about it but at least there is some acknowledgement of severity.
The piece on the BBC News website focused more on the new study from the University of Bristol which served as the trigger for this latest splurge of publicity. Chronic Fatigue Syndrome at Age 16 Years claimed that the prevalence of pediatric CFS was 1.9% in 16-year-olds, higher than previously thought. The BBC article rounded this up to 1 in 50 and contrasted it with the 1 in 1000 (it said) who are actually diagnosed. Hmm.
The study also claimed that CFS affected almost twice as many girls as boys at age 16 and was more likely to affect children from disadvantaged backgrounds. According to the article, the study authors said this dispelled the commonly held view that CFS/ME was a “middle-class” illness, or “yuppie flu”.
I think I would dispute the fact that this is a widely held view any more (except perhaps among journalists), most of the general population having either forgotten about yuppies or being too young to have heard of them at all. But I suppose it is a useful enough finding – if it can be trusted, that is, but more of that in a moment… Continue reading “None The Wiser…”
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”
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”
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”
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”
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”
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…
An overview of David Tuller’s comprehensive critique of the PACE Trial
Sign a petition calling for the retraction of unfounded PACE trial claims