Beyond the Bounds of NICE

A long time ago, in the early years of my ME, a small study in The Lancet suggested that intramuscular magnesium injections could be beneficial for CFS (as they called it). I took a copy of the study to show my GP, the late Dr Paul Moxon here in Leeds, UK, who read it and started injecting his ME patients in line with the study protocol. In a matter of a few weeks, I went from being largely housebound to up and about again. I made this transition gradually but it is worth recording, by the by, that any deconditioning which might have occurred while I was being looked after by my parents for several years did not present any significant impediment to my remobilisation. When my body got what it needed, I was able to function again. I was by no means cured but the improvement was substantial.

Since then, my ME has fluctuated and at one time I became largely housebound again. On that occasion, magnesium sulphate failed to pull me round – and I understand that subsequent trials of magnesium injections failed to replicate the success of that first study.

Nevertheless I am clear that magnesium injections helped me on that first occasion. I had several courses of six weekly injections. Each time, I began feeling better after the third week. The improvement would be sustained until a few weeks after the course but then tail off again. We eventually discovered that the best regime for me was an ongoing course of injections every three weeks. I kept this up for several years, stopping from time to time to see what would happen. Eventually I reached the stage Continue reading “Beyond the Bounds of NICE”

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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.

Action for ME and the PACE Trial

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”

Letter to Sunday Times

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”

Medically Unexplained Assumptions

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”

Message to Planet PACE

Prof James Coyne’s Freedom of Information request for data from the PACE Trial has been refused and he has shared the letter he received in explanation. It makes astonishing reading.

There have of course been numerous previous refusals concerning this data but the excuses given are increasingly desperate and unconvincing.

Prof Coyne was told: ‘The university considers that there is a lack of value or serious purpose to your request. The university also considers that there is improper motive behind the request. The university considers that this request has caused and could further cause harassment and distress to staff.’

The letter goes on to say: ‘The active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.’

The letter concludes: ‘The university considers that when applying a holistic approach, this request can properly be considered to be vexatious.’

Bearing in mind that James Coyne requested the data so that he could ‘verify the substantive claims of the article through reanalysis’, it is difficult to see why his request should be thought to ‘lack value or serious purpose’ or why it should be considered that he has ‘an improper motive’.

It is also hard to see why the PACE researchers’ apparent ‘distress’ and their fears of ‘public criticism and reputational damage’ can possibly be considered adequate justification for refusing access to their data. Continue reading “Message to Planet PACE”

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”