Probing the Holes in MUS

This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all the way back to the nineteenth century (just like a character from Netflix) to take a look at the case of the unfortunate Mr Le Log, who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage.

The accident was unfortunate of course but what made things worse for Le Log was that he had no external head injuries. He most likely had internal ones, but at that time medical science did not recognise the existence of such injuries as they didn’t have the technology to detect them. As far as the doctor who examined him was concerned, therefore, there couldn’t possibly be any physical reason for Le Log’s symptoms of memory loss etc. The doctor could only conclude that they were the result of ‘hysteria’.

In the many years since then, similar assumptions have been made about many other presentations of symptoms, such as those relating to epilepsy, multiple sclerosis and Parkinsons disease, to name but a few, yet subsequent advances in technology have revealed that these conditions too are really physical in nature and have nothing to do with ‘hysteria’ at all.

The habit of assuming that any condition which is not understood by doctors  must be a rooted in mental health continues to this day, however. It has been shown to be wrong over and over again, and you would have thought that gradually, over the years, it would have fallen into disuse. But no. The medical profession continue to insist that they already know everything there is to know about illness, so any set of symptoms they don’t understand can’t possibly be a ‘proper’ disease – this in spite of the fact that they really know they don’t know everything, and are happy enough to admit this in other contexts.

The word ‘hysterical’ is rarely used these days, but plenty of other names have come along to replace it in describing such conditions: medically unexplained symptoms (MUS), which we are using here, is one of them, as are the terms ‘functional‘ and ‘somatised’. ‘Functional’ is especially misleading, I think, as it sounds like it is describing a physical fault in a system. (You could almost think that doctors were deliberately setting out to mislead their patients…)

Far from falling into disuse, these terms seem to be gaining in popularity at the moment. As I mentioned last time, up to 45% of GP appointments and half of all new hospital visits are now considered to be due to MUS. This really is an extraordinarily large number, and new MUS services are being encouraged into existence to deal with it all. The IAPT (Improving Access to Psychological Therapies) scheme, originally intended to address anxiety and depression, is now being extended to deal with MUS (and long term conditions). Nimnuan, Wessely, and Hotopf, authors of the paper “Medically Unexplained Symptoms -an epidemiological study in seven specialties” which seems to have been the source of the ‘50% of hospital visits’ figure, announce rather grandly: “It is now time to acknowledge that the management of medically unexplained symptoms is one of the important tasks facing the specialist in internal medicine – indeed, in some clinics, it constitutes the majority of the work.”

Is all this really true? Is the vast mountain of MUS that Wessely et al have brought to our attention real? Sir Simon Wessely’s presence amongst the authors of the ‘seven specialties’ paper was bound to increase my doubts about this, especially bearing in mind his favourable opinion of the calamitous PACE trial. So I was interested to take a look at how he and his colleagues arrived at their figures for the prevalence of MUS .

I found I had a number of concerns:

“Medically unexplained symptoms were defined as any current principal somatic complaint reported by patients for which no definite medical diagnosis could be found by physical examination and appropriate investigation… The physician’s opinion was determined by the final diagnosis stated in the clinical case notes. If the physicians gave a diagnosis of “functional,” or continued to defer the diagnosis because of no detected abnormality, we considered these as indicating that the symptoms were medically unexplained… Case notes were reviewed to ascertain the final diagnosis approx three months after the initial visit.”

So in other words, if the doctor hasn’t come up with an explanation for a symptom in three months, then it is officially “medically unexplained” as far as this research is concerned. The problem for me here is that, in my experience, most diagnoses take longer than three months to obtain, so this three month cut-off seems unreasonable and likely to exaggerate the extent of the MUS problem.

  • The researchers developed a ‘system review questionnaire’ for use in the study but I haven’t been able to find it online. They describe it as follows:

“It consists of 11 main symptoms, which correspond to 13 recognised functional somatic syndromes, with 25 additional symptoms, including somatic symptoms, sleep, and psychological complaints. A total of 27 individual somatic symptoms were enquired about.“

I don’t find that all that easy to interpret, so it’s a shame we don’t have a copy of the questionnaire. But the impression I get is that if a patient has at least one of those 27 individual somatic symptoms which has not been ‘explained’ by the doctor by the time the 3 months are up, then they will be categorised as having medically unexplained symptoms. In my opinion, however, it is a natural part of the human condition to have one or two aches and pains and other bodily malfunctions of unknown origin at any one time. So it seems to me that once again these figures will be inflated. (If you would like to take a look at this for yourself and see if you think I am representing it correctly, then please do so. The full paper is freely available online.)

  • As quoted above, the 11 “main symptoms“ correspond to “13 recognised functional somatic syndromes”. Not all of these are named in the paper but three of them are mentioned in the introduction:  IBS, fibromyalgia, and – you guessed it –  CFS. Well the World Health Organisation classes IBS as ‘a disease of the intestines’, and fibromyalgia as a ‘soft tissue disorder’. They have nothing to say about CFS but myalgic encephalomyelitis is a classed as a neurological condition of course and as the Department of Health apparently believes ME and CFS to be one and the same, a strong case could be made for CFS to be also classed as neurological. I can only presume that a patient presenting with the symptoms of any one of the ’13 recognised functional somatic syndromes’ mentioned would be categorised as ‘unexplained’ by the researchers. However, as the three ‘syndromes’ mentioned are in fact officially recognised as ‘somatic’ (ie physical) conditions, a case could be made that once again the number of patients with MUS are being inflated – and we haven’t even looked at the remaining so called ‘functional somatic syndromes’ yet. The chances are that some of those aren’t really ‘functional’ either. Is it reasonable of the government to recognise medical conditions as physical yet at the same time class them as MUS in the supporting statistics for a major initiative to expand services for such conditions? I don’t think it is.

So where does this leave us exactly? While this isn’t all as clear as I would like it to be, I feel there’s enough here to place a big question mark against these figures. If I was relying on them to support a substantial government initiative, I think I’d want to take a very good look at them first. Likewise the supporting figures for primary care. Has anyone done so? I wonder. They may well have simply relied on peer review to validate the research, but that didn’t work so well for PACE, did it?

While we’re on the subject of diagnosis: last time, I drew attention to some advice for GPs which seemed to suggest they should place undue focus on the mental health of patients presenting with physical symptoms in order not to miss any cases of MUS. If you’ve read the second of my original posts on MUS, ‘Unexplained, Misdiagnosed, Untreated‘, you’ll also know that MUS has been a substantial factor in the misdiagnosis of rare conditions, sometimes causing catastrophic delays in treatment. But there are also other concerns, most notably a gaping logistical gap which appears to lie at the very centre of the MUS strategy as it is described in the Guidelines for Commissioners (the very document which, supposedly, is supposed to kickstart the new range of services for MUS into action).

As I mentioned last time, MUS are described in these guidelines as: ‘bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology’. A similar definition was used by Wessely et al in their paper above. All this may seem reasonable enough at first glance, but if you think about it more carefully, you might start to wonder ‘how sufficient is ‘sufficient’ and ‘how adequate is ‘adequate’? As far as I can tell, the guidelines give no guidance on that. They do however warn against the danger of over-investigation. They say:

“Patients are often subjected to repeated diagnostic investigations, and unnecessary and costly referrals and interventions”

and

“Doctors can cause harm by pursuing inappropriate investigations in their efforts to discover the cause of symptoms. Such procedures can exacerbate anxiety. Over-investigation may cause unnecessary damage to healthy tissues and lead to over-treatment, including unknecessary surgery, with all its complications, and in extreme cases more invasive treatments such as urinary catheters and tube feeding, of various types. Doctors may also prescribe unnecessary medication that can lead to side effects, and addiction.”

Forgive me, but that last paragraph reads like a text book example of catastrophising, something I am led to believe is more typical of a MUS patient than a set of NHS guidelines. I suppose a doctor would explain it as follows: “I’m sorry Mr Smith but it’s really best if we don’t give you a gastroscopy to investigate your stomach pains or you’re very likely to end up in bed with several organs accidentally removed, being drip fed unnecessary medication. What would you like us to give you instead to help with your constant agonising pain: CBT or mindfulness?”

I’m not sure this is really striking a realistic balance between ‘adequate examination‘ and ‘over-investigation’. It’s more like freezing to death for fear of catching fire if you light a match.

The truth is that the more adequate the examination, the more likely it is to find sufficient pathology if it is present. But the guidelines stress again and again the need for less investigation. Is there not a danger of an enormous void opening up here, a void into which the physically ill may fall? Those whose pathology is overlooked by tests which turn out not to have been so adequate after all? Always assuming, of course, that they even managed to get a test. ‘Repeated tests’ seem to be especially frowned upon by the guidelines, so if you’ve been tested before, you may not get another chance. The impression given, rightly or wrongly, is that the NHS will no longer cater for patients who develop pathology for which they’ve previously been tested. Unless you want CBT of course, in which case your brand new local MUS clinic will be happy to help.

This is especially concerning in the light of the guidelines’ acceptance that ‘MUS may be caused by physiological disturbance, emotional problems or pathological conditions which have not yet been diagnosed’. (My italics.) For if that is indeed the case, there’s a problem, isn’t there? With all this desire to avoid investigation, how are these conditions which have not yet been diagnosed going to get diagnosed – especially once a patient has been judged to have MUS? I can find no answer to this important question in the guidelines. But it is a life-threatening question and surely one which requires an answer….

I’d like to complete this post with a brief overview of the current situation, as regards both MUS and IAPT. The underlying principles behind the original IAPT scheme seem to me to be praiseworthy: delivering therapies for mental health problems such as anxiety and depression which previously all too often went untreated. There are concerns, however, especially regarding the expansion of IAPT to include MUS and long term conditions. The official guide to this new ‘care pathway’, for instance, cites CFS as a MUS condition, repeating the error from the ‘seven specialties’ paper but this time in a government document; while IAPT as a whole is also under scrutiny following an audit by Michael J Scott which suggests that the therapies used (principally CBT) come nowhere near achieving the 50% curative rate which is claimed for them. This concern is covered in detail in the latest issue of the Journal of Health Psychology (ed David F Marks). 

As for MUS, if we stand back and look at the overall picture of that, is there even greater cause for concern? Not only must we have the same worries about the efficacy of the therapies, surely questions must be asked sooner or later about the vast numbers which are supposed to be affected by this phenomenon and the effect on the diagnosis of physical/somatic conditions if undue emphasis is placed on it.

Put in a single sentence, the question is this: do we have a situation where a massive new initiative is being rolled out to promote therapies with exaggerated efficacy for the purpose of combating an imaginary epidemic, at the same time encouraging doctors to overlook and under-investigate genuine pathologies?

Only asking…

 

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Spreading the Word

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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”

The Light of Day

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”

Make Sure We Speak

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”

101 Misconceptions About M.E.

  1. It’s all about fatigue.
  2. There are no distinctive symptoms
  3. There is no evidence of physical abnormalities
  4. It may not even exist
  5. Most people recover
  6. People with ME don’t want a psychiatric diagnosis because of the stigma
  7. Because we don’t have enough stigma already from having ME
  8. People with ME are scared of exercise
  9. You need more exercise
  10. You need more fresh air
  11. You’ll get better by fighting it
  12. You’ll get better if you think positive
  13. You’ll get better if you push on through the pain
  14. You’ll get better if you stop wearing shoes
  15. All your friends will understand
  16. If you can do something today, you can do it tomorrow
  17. You look as well the rest of the time as you do for the one hour a week when you see your friends
  18. I feel like that as well
  19. That’s how I feel on a Monday morning
  20. That’s how I feel on a Friday night
  21. You should have got better by this time
  22. You have to keep going
  23. You can’t let people down
  24. You’re probably just feeling stressed
  25. The doctor will know what to do
  26. Doctors are trained in ME
  27. You’ll be pleased to know that your bloods are normal
  28. We need to avoid extensive testing
  29. You wouldn’t get upset like that if you weren’t depressed
  30. Anti-depressants will make you better
  31. If you go to an ME clinic, you’ll see a doctor
  32. Oh yes, we all think it’s a physical illness here at the clinic
  33. Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) will make you better
  34. GET is perfectly safe
  35. Proven physical intolerance to exercise can be overcome by doing more exercise
  36. You’ve recovered if you can walk as far as patients with congestive heart failure
  37. If you don’t finish the course of GET then of course you must be recovered
  38. If you don’t attend appointments and we never hear from you again then of course you must be recovered
  39. If GET doesn’t cure you and you’ve told us so then you must have ‘illness anxiety’ instead
  40. Or one of numerous other ‘psychogenic’ conditions we’ve invented – you can take your pick
  41. We don’t rediagnose people to massage our outcome figures – that’s just a by-product
  42. Dividing illnesses into ‘physical’ and ‘non-physical’ is a mistake that patients make, not doctors
  43. People get ME because they want to be perfect
  44. It’s the patient’s fault
  45. It’s the parents’ fault
  46. You are making your children ill
  47. We have to set goals for your children
  48. Your children are safe with us
  49. Calling trials on children cute names like ‘Smile’ and ‘Magenta’ makes them less inherently evil
  50. The PACE trial is excellent science
  51. Eminent Consultant Psychiatrists can always be trusted
  52. 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
  53. This is one of the most robust findings about ME
  54. We’ll release our data but not to patients because their illness is nothing to do with them
  55. We’ll release our data as soon as we take the names off the anonymised data sets
  56. We’ll release the data when we’ve finished studying it (which we never will)
  57. We researchers get itchy about releasing data due to research parasites
  58. We at the PACE trial take confidentiality very seriously which is why we kept the data in unlocked drawers.
  59. People with ME are too vociferous for their own good
  60. We can’t get people to study ME because of the death threats
  61. It’s safer for psychiatrists in Afghanistan
  62. Why are you attacking us? We’re the very people who are trying to help you
  63. Sir Simon Wessely has to live in an iron bunker at the bottom of Loch Ness
  64. Some ME militants have to be chained up or they’ll savage passers by.
  65. There’s just not enough psychologists studying the lifestyle of people with ME
  66. There must be some secret, sinister reason why people with ME tend to stay at home and use the internet a lot
  67. Probably the same reason they don’t buy many shoes
  68. As soon as we understand these things, we’ll know a lot more about the causes of this illness.
  69. This helped me so it must help you
  70. If you buy one of these you’ll get better
  71. You look so well, you must be getting better
  72. You must feel better – you’ve slept so much
  73. You never sleep so you can’t be tired
  74. You must have a low pain threshold
  75. You should try taking a paracetemol
  76. You caught it off the internet
  77. You don’t have to know the first thing about ME in order to write about it
  78. This latest development has finally proven it’s not just ‘yuppie flu’
  79. So that’s all right then
  80. If you read something often enough in the papers, it must be correct
  81. The Science Media Centre is an accurate source of information
  82. Science journalists always look critically at the studies they report
  83. Especially in the UK
  84. ME is partly physical and partly psychiatric because that’s what the book I’m writing is about
  85. If you want to understand a neurological condition, the best person to ask is a sports physiologist in Cape Town
  86. 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
  87. ‘Chronic fatigue’ is another name for ME
  88. All people with a diagnosis of chronic fatigue syndrome (CFS) have the same condition
  89. So it makes perfect sense to compare patients in different studies – even though they’ve used different diagnostic criteria
  90. 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
  91. 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?
  92. All of which is very straightforward and not confusing at all
  93. People with ME have no reason to get upset
  94. 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
  95. It could never happen to you
  96. ME is not serious
  97. ME does not devastate lives
  98. ME is never fatal
  99. ME never leaves you stuck in bed, unable to sit up, tolerate light, or communicate with the ones you love
  100. If you ridicule people with ME for making a fuss they’ll stop doing it
  101. 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.

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”

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”