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”
After long opposition (and substantial expense) from the trial investigators and Queen Mary University of London, data from the £5m publicly funded PACE Trial, which studied graded exercise (GET) and CBT therapies for ME/CFS, has finally been released under the Freedom of Information Act. ME patients Alem Matthees, Tom Kindlon and Carly Maryhew, with the support of two prominent US statisticians, have reanalysed the data according to the original trial protocol and illustrated that the recovery results were exaggerated by a factor of four due to unexplained protocol changes. The revised results were in fact statistically insignificant. This means that , in spite of what the investigators claimed, the trial provided no proof that GET and CBT help people with ME/CFS to recover.
Though those who have studied the trial have long suspected that the results as originally presented were grossly misleading, it is still a “gosh- wow” moment to actually witness the proof of this. One is tempted to ask “How did they think they would get away with what appears to be such a deliberate attempt to mislead?”
The answer appears to be that they calculated quite cleverly: they almost did get away with it. The professional reputation of the investigators had led many prominent people to assume that they must be in the right, and that the ME patients who have been fighting to expose the truth (whom the PACE investigators branded as ‘a fairly small, but highly organised, very vocal and very damaging group of individuals’) were unreliable obsessives, eager to discredit the trial simply because its conclusions did not agree with their own beliefs about ME. (In actual fact, the attempt to besmirch the patients in this way appears to have been a classic case of ‘projection’, the investigators having apparently twisted the figures to fit their own mistaken beliefs about the condition.)
Even now, it seems likely that they will stick to the strategy of claiming that black is white and relying on their reputations to Continue reading “The Light of Day”
After a difficult few weeks in the world of ME advocacy, it’s been really heartening to see the new critique of the PACE trial and accompanying editorial on the Sense About Science USA/ American Statistical Association website. After 7000 words of searing analysis, Rebecca Goldin concludes that the flaws in the study design “were enough to doom its results from the start”, while Trevor Butterworth’s editorial pronounces “a terminal prognosis” on the study. As far as patients are concerned, this demise cannot come too soon – and it remains to be seen if the British media, who have uncritically lauded the study on so many occasions, will consider this latest development to be worth reporting.
Nevertheless, it is encouraging for patients to receive such clear validation of what we have been saying for so long from such a reliable source. It has to be another important step in the right direction.
Trevor Butterworth writes: “David Tuller may not get a Pulitzer Prize for investigating PACE trial on a blog; but his service to—and we do not exaggerate—millions of sufferers around the world make it hard for us to think of another work of journalism so deserving of commendation.” Patients – including those who produced the initial critiques which first attracted Tuller to the issue – will heartily agree with that analysis, likewise with Butterworth’s acknowledgement of the important contribution of Julie Rehmeyer in drawing attention to the flaws of the trial. Let us hope their work pays off very soon and the study is deservedly retracted. Lead PACE investigator Peter White still has his finger in the dam but sweat is breaking out on his forehead. He must be wondering how much longer he can hold back the torrent of truth. Continue reading “Make Sure We Speak”
- It’s all about fatigue.
- There are no distinctive symptoms
- There is no evidence of physical abnormalities
- It may not even exist
- Most people recover
- People with ME don’t want a psychiatric diagnosis because of the stigma
- Because we don’t have enough stigma already from having ME
- People with ME are scared of exercise
- You need more exercise
- You need more fresh air
- You’ll get better by fighting it
- You’ll get better if you think positive
- You’ll get better if you push on through the pain
- You’ll get better if you stop wearing shoes
- All your friends will understand
- If you can do something today, you can do it tomorrow
- You look as well the rest of the time as you do for the one hour a week when you see your friends
- I feel like that as well
- That’s how I feel on a Monday morning
- That’s how I feel on a Friday night
- You should have got better by this time
- You have to keep going
- You can’t let people down
- You’re probably just feeling stressed
- The doctor will know what to do
- Doctors are trained in ME
- You’ll be pleased to know that your bloods are normal
- We need to avoid extensive testing
- You wouldn’t get upset like that if you weren’t depressed
- Anti-depressants will make you better
- If you go to an ME clinic, you’ll see a doctor
- Oh yes, we all think it’s a physical illness here at the clinic
- Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) will make you better
- GET is perfectly safe
- Proven physical intolerance to exercise can be overcome by doing more exercise
- You’ve recovered if you can walk as far as patients with congestive heart failure
- If you don’t finish the course of GET then of course you must be recovered
- If you don’t attend appointments and we never hear from you again then of course you must be recovered
- If GET doesn’t cure you and you’ve told us so then you must have ‘illness anxiety’ instead
- Or one of numerous other ‘psychogenic’ conditions we’ve invented – you can take your pick
- We don’t rediagnose people to massage our outcome figures – that’s just a by-product
- Dividing illnesses into ‘physical’ and ‘non-physical’ is a mistake that patients make, not doctors
- People get ME because they want to be perfect
- It’s the patient’s fault
- It’s the parents’ fault
- You are making your children ill
- We have to set goals for your children
- Your children are safe with us
- Calling trials on children cute names like ‘Smile’ and ‘Magenta’ makes them less inherently evil
- The PACE trial is excellent science
- Eminent Consultant Psychiatrists can always be trusted
- If you use CBT to convince someone they’re not ill and they say they’re not ill, that’s classed as recovery even though they’re just as ill as they’ve always been
- This is one of the most robust findings about ME
- We’ll release our data but not to patients because their illness is nothing to do with them
- We’ll release our data as soon as we take the names off the anonymised data sets
- We’ll release the data when we’ve finished studying it (which we never will)
- We researchers get itchy about releasing data due to research parasites
- We at the PACE trial take confidentiality very seriously which is why we kept the data in unlocked drawers.
- People with ME are too vociferous for their own good
- We can’t get people to study ME because of the death threats
- It’s safer for psychiatrists in Afghanistan
- Why are you attacking us? We’re the very people who are trying to help you
- Sir Simon Wessely has to live in an iron bunker at the bottom of Loch Ness
- Some ME militants have to be chained up or they’ll savage passers by.
- There’s just not enough psychologists studying the lifestyle of people with ME
- There must be some secret, sinister reason why people with ME tend to stay at home and use the internet a lot
- Probably the same reason they don’t buy many shoes
- As soon as we understand these things, we’ll know a lot more about the causes of this illness.
- This helped me so it must help you
- If you buy one of these you’ll get better
- You look so well, you must be getting better
- You must feel better – you’ve slept so much
- You never sleep so you can’t be tired
- You must have a low pain threshold
- You should try taking a paracetemol
- You caught it off the internet
- You don’t have to know the first thing about ME in order to write about it
- This latest development has finally proven it’s not just ‘yuppie flu’
- So that’s all right then
- If you read something often enough in the papers, it must be correct
- The Science Media Centre is an accurate source of information
- Science journalists always look critically at the studies they report
- Especially in the UK
- ME is partly physical and partly psychiatric because that’s what the book I’m writing is about
- If you want to understand a neurological condition, the best person to ask is a sports physiologist in Cape Town
- If I write an article about how people with ME are too lazy to get out of bed and spend all their time out in the streets shooting psychiatrists, I’ll look really clever and no one will complain
- ‘Chronic fatigue’ is another name for ME
- All people with a diagnosis of chronic fatigue syndrome (CFS) have the same condition
- So it makes perfect sense to compare patients in different studies – even though they’ve used different diagnostic criteria
- And to apply the findings to all people with a diagnosis of CFS even though some of them have ME and some of them don’t
- And with so many different diagnostic criteria already in use, it can’t do any harm to invent another one from time to time for no apparent reason, can’t it?
- All of which is very straightforward and not confusing at all
- People with ME have no reason to get upset
- You can’t just get an infection one day and never get better, so you spend the whole of the rest of your life being ill
- It could never happen to you
- ME is not serious
- ME does not devastate lives
- ME is never fatal
- ME never leaves you stuck in bed, unable to sit up, tolerate light, or communicate with the ones you love
- If you ridicule people with ME for making a fuss they’ll stop doing it
- It’s OK for things to go on the way they are.
Footnote: All the above statements are WRONG (unless I missed some, in which case please tell me!) I’ve mixed deadly serious stuff with stuff that I think is funny, which is always a bit precarious, so if I’ve offended anyone I didn’t intend to offend, I apologise.
I was prompted to write this by the recent extract from Jo Marchant’s book ‘Cure’ in The Observer, in which she repeated many of the misconceptions about ME I’ve already dealt with in previous posts. It seemed a bit dull just to say it all over again, so I thought I’d do it a different way this time.
If there’s any similar misconceptions about ME you’d like to share, please feel free to do so, either in the comments to this post, in tweets to me at @spoonseeker using the hashtag #MEmisconceptions or anywhere you like.
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”
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”