Wearing a Forced Smile

Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.

The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.

Can you guess what results this trial has achieved?

Well, the researchers reported that LP combined with standard medical care produced better results than standard medical care alone. If you look at how they assessed this, the outcome was scarcely surprising. In common with other similar trials assessing ‘psychological’ treatments for M.E. (including the controversial £5m publically funded PACE trial) it was unblinded and there was very little in terms of objective assessment of outcomes. The results were almost entirely assessed using self-completed questionnaires. So in other words what they did was to tell the children they were better and then ask them if they were better. Just in case this didn’t achieve the desired outcome, remember that the children had also been told that the process would only work if they believed in it and if they didn’t recover it would be their fault.

Remember too that these were children being questioned by adults in positions of perceived authority.

Now what was that answer again, children?

Apparently we are supposed to treat this extraordinary procedure as a piece of serious science. After all, we have the science editors at the BBC and the Guardian as our role models. As with the many previous papers from the PACE researchers and their colleagues, these so called professional journalists swallow the whole thing without so much as a grimace and repeat it all back just as they have been told it, like performing parrots. The source on which they rely to tell them what to think is the Science Media Centre, a shadowy organisation which purportedly exists to provide a balanced view of science but in fact appears to promote the agenda of vested interests: in this case those who have built careers on the backs of patients with M.E., promoting their unproven psychological theories, misdirecting patients and their families, and effectively diverting funds from much-needed biomedical research.

On top of all the nonsense they spouted in Thursday’s coverage about the trial itself, these ‘journalists’ have also been coached to repeat yet again the habitual misinformation about M.E. researchers being abused by patients, apparently to such an extent that most of them have left the field altogether. This simply isn’t true. While one or two psychiatrists have announced their retirement, at least one purportedly in fear of his life, this doesn’t seem to stop them continuing to write about M.E. or, in at least one case, issuing further papers on the subject. These accusations against patients reached their peak at the Freedom of Information Tribunal which released important data about the PACE Trial. The Tribunal ruled that the accusations had been greatly exaggerated. Apparently the sole piece of evidence produced for all the so-called threats was that one of the researchers had been heckled at a lecture.  In reality, while any abuse which may occur is regrettable, by far the bulk of what these researchers complain about is simply legitimate criticism about abysmal so-called ‘science’ such as the Smile trial.

Meanwhile, those scientists researching the biomedical roots of M.E., of whom there are many worldwide – though precious few in the UK where psychiatrists take most of the funding – get on extremely well with patients, who in many cases raise the money they need to do their work.

Though such research remains grossly underfunded, progress is slowly being made. As Prof Jose Montoya announced at a conference just last week, it is no longer true to say that this is a mystery illness. It is one whose pathogenesis is slowly being unveiled.

Only a small proportion of such progress is reported in the UK media. The Science Media Centre don’t tell the journalists about it and, it seems, they can’t be bothered to look for themselves.

To add to the misinformation: on BBC Radio Four’s Today programme (approx 7-50 am), lead Smile researcher Esther Crawley grossly misrepresented the patient support group the M.E. Association by claiming that they didn’t want M.E to be researched in children. In fact, their complaint was not against research for children with M.E. in general, but the Smile Trial in particular, which they considered to be unethical. I have to say that I agree with them. Children frame their view of the world at least partially according to what adults tell them, so for them to be told they are not ill, contrary to their own perceived experience and to what is now understood about the physical reality of this neuroimmune condition, appears to be a betrayal of their trust. Research evidence by VanNess et al, among others, strongly suggests that it is harmful for M.E. patients to ignore the way they feel and push themselves beyond their capability. This can bring about a long-term deterioration in their condition. Unlike adults, children have a good chance of making a full recovery if they are simply allowed to take the rest they need. To encourage them to ignore the way they feel, as does the lightning process, is therefore particularly unfortunate. It can push children who might otherwise have recovered into a lifetime of chronic illness.

This is not the only potential damage to children. Others have been driven into anxiety and depression under the pressure of being made to act as if they are well when they are not. Some have even attempted suicide under the strain of this.

The Guardian article reported that Esther Rantzen’s daughter Emily had been cured of M.E. by the Lightning Process: another piece of misinformation. It was reported some years ago that Emily actually had coeliac disease, not M.E., and she described the pressure of going for several years after her so called ‘recovery’ pretending she was well when she wasn’t:

“I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’. “

How many more children will be subjected to these various forms of harm following Thursday’s inaccurate coverage? And how long will it be till UK journalists start reporting M.E. responsibly?

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Barefaced

Over the past 48 hours, many patients have been expressing concern about the involvement of Prof Peter White in the proposed MEGA biomedical ‘big data’ study of ME/CFS. It seems extraordinary that someone who believes in the simplistic ‘fear-avoidance’ model of ME/CFS should even wish to be involved in this study. Of what relevance is psychiatry to genomics?

Then, yesterday, came a timely reminder of why we can’t allow Prof White anywhere near this project. His Guardian article in defence of PACE was an extraordinary illustration of a) his refusal to accept the truth about his fatally flawed research and b) his determination to say whatever it takes to try to defend the trial, however much deceit this may involve.

It has long been obvious to those who have studied PACE that the trial involved blatant trickery, juggling outcome measures to produce the results they wanted, but these deceits were not always obvious to those unschooled in statistics and/or without the time to sit down and read through the details. Just recently, however, as the whole PACE edifice comes closer to collapse, the lies seem to be getting both more desperate and more transparent. Yesterday’s article contains a real transparent whopper, but I’ll work through the piece in order, saving the whopper for last:

  • White dismissively mentions an earlier post which claimed that sexism was part of the cause of ME patients’ mistreatment. He must surely be aware, however, that McEvedy and Beard, the two psychiatrists who first claimed ME to be a ‘hysterical’ condition cited ‘the high attack rate in females compared with males’ as part of their argument. Sexism therefore certainly played a part in the emergence of the PACE authors’ view of the condition.
  • White goes on to make several mentions of ‘fear’ among patients. “The idea of exercise was scary for some patients” he writes, though he seems to have forgotten his own 2005 study which demonstrated that “CFS patients without a comorbid psychiatric disorder do not have an exercise phobia”.
  • White speaks disparagingly of the newspaper articles which followed the various PACE announcements, accepting that headlines such as “just get out and exercise, say scientists” were harmful and misleading. At the time, however, he and his fellow PACE authors did little or nothing to try to correct such coverage. Furthermore, these very articles were written by journalists who had been briefed by the Science Media Centre, the shadowy organisation purporting to support “balance” in science reporting, which in turn was briefed by the PACE authors themselves and their associates.
  • White continues to quote his figure of 22% for ‘recovery’ in patients receiving GET or CBT, making clear that by ‘recovery’ he really means ‘remission’. (This was another sleight of hand. White and his fellow authors failed to correct media reports which – not unreasonably – assumed that ‘recovery’ meant ‘recovery’). Yet those of us who have been following the PACE saga know that the 22% result no longer stands. Alem Matthees, Tom Kindlon and their colleagues have shown in their reanalysis that the true result is only 7% for CBT and 4% for GET, a statistically insignificant outcome, being scarcely above the 3% figure for standard medical care which everyone on the trial received anyway (including those on CBT and GET.)

This leads on to the whopper, for White gives the impression in the Guardian article that Matthees and his team got their result by playing around with the figures. The implication is that this was a fiddle. In actual fact, of course, Matthees used the original trial protocol which White and his colleagues had said they would use but changed when (we can only assume) it failed to give them the results they wanted. Yes, there was fiddling going on, but it wasn’t Matthees that was doing it.

White must know that Matthees was using the original protocol. This was explicitly why Matthees requested the data – because White and his team had protested they didn’t have time to do the calculations themselves. White must have sat through – or at least paid close attention to – the Freedom of Information Tribunal which issued the order to release the data. It can’t have escaped his attention that it had been requested specifically to reanalyse the figures according to the PACE authors’ own original protocol. Yet in the Guardian article, White gave the impression that Matthees and his team had simply been making random tweaks to fiddle the figures. The only possible explanation for why he wrote it like that was to deliberately mislead Guardian readers. He must have known better. He did know better. He was telling a barefaced lie to try to save his reputation.

I’m sorry. A man who will do something like that is not to be trusted. It is totally unreasonable for the ME organisations who are supposed to be protecting patients’ interests to think it is OK for him to be involved in an important piece of biomedical research into this illness. Why they even talk to him any longer is beyond me. It is high time we move on from PACE – and move on from Peter White. We’re really suffering here. We deserve better.

 Note: I’ve been asked to include details of ‘unsigning’ in case you previously signed the MEGA petition and wish to un-sign pending further information about the study. I covered it here

White In Denial

We’ve had to put up with decades of nonsense about ME in the press but today’s Guardian article by Peter White of the PACE Trial has to be the worst I’ve seen. It wasn’t easy to leave a comment on the article while shaking with anger but I did my best. Here’s what I wrote. I’m pleased to say that many others were making powerful points at he same time.

Following the recent release of data from Peter White’s PACE trial (by order of a Freedom of Information tribunal, £250,000 having been spent in attempting to stop it) PACE has finally been revealed as the travesty of the truth it always has been. Rather than give the appropriate heartfelt apology, however, Prof White continues in denial.

The blog to which he disparagingly refers was written by patients who have used energy they can ill afford to spend in a David-and-Goliath struggle to reveal the truth about this reprehensible study. With the aid of expert statisticians they have not distorted the figures, as Prof White implies. What they have done is to use the newly released data to analyse the results in line with the trial’s original protocol, which White and his fellow authors originally declared they would use but then changed their minds as it didn’t give them the outcomes they wanted. They never gave a satisfactory explanation for this change but it now seems pretty obvious why it happened. The newly reanalysed results show that GET and CBT are of no more use than a placebo. They are worthless for ME/CFS, but White and his associates refuse to admit it as they have built their life’s work on these therapies. Therapies which, moreover, have been shown to be harmful for patients with ME/CFS in numerous surveys. Patients have ended up housebound or bedbound for years on end because of the efforts of White & Co, but still they refuse to admit they have done anything wrong.

This change of protocol was only the tip of the iceberg in terms of the study’s shortcomings. The Criteria used to select subjects for the study included patients with other fatigue conditions; the numerous changes in protocol meant that patients could be ill enough to join the study, deteriorate during it, yet still be classed as ‘recovered’ at the end; objective outcome measures which actually measured patients’ abilities were abandoned in favour of questionnaires; conflicts of interest on the part of the investigators were not disclosed to study participants, the list goes on and on…. In years to come, PACE will be used as an example of how NOT to conduct a research study.

 

P.S. The most complete analysis of the many shortcomings of the PACE trial is by David Tuller. The article, Trial By Error,  is in several parts. There are links to all of them here. If you just read the summary though, at the opening of part one, that tells you a lot.

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.