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”

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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”

Open Letter to Healthwatch

If you took part in the Healthwatch survey of NHS ME/CFS services, you will be disappointed to read the following open letter from ME patient Karen Morris, who initiated the project. The information from such a large survey will be a very valuable resource and it is a matter of great concern that it is not apparently being shared in the way that was promised.  After so much effort and – presumably – expense, why should the anonymised results be kept under wraps? Karen has given permission for the letter to be reposted.

Update: Following this post, there have been some very helpful responses on Twitter from Healthwatch Trafford offering to make the survey info available when it has been anonymised and explaining that they are still hard at work on the survey. All of which sounds promising. It will be interesting to see the results…

Open letter to:
Healthwatch Trafford
Trafford MPs: Kate Green, Graham Brady, and Mike Kane.
Cc: Healthwatch England

In November 2014, I created a project for Healthwatch Trafford to allow M.E. (CFS) patients to give good and bad feedback on health and care services through a survey. Healthwatch Trafford made this available to M.E. patients throughout England.  I am extremely grateful to Healthwatch Trafford for this.

Healthwatch told me told that this is one of the most successful responses, with 880 patients from England completing the survey within the first month (by 14 June 2015) and probably a lot more since.

The results were to be: –

1. Placed in a report written by Healthwatch Trafford.

2. Sent to the other relevant local Healthwatch.

3. Sent to Healthwatch England, to see if it was a national issue.

4. To use the information to improve health and care services for patients with ME (CFS).

To my knowledge, this has not happened, except results being forwarded in Greater Manchester. I have sent regular emails and given a reasonable period of time – It is now March 2016. Continue reading “Open Letter to Healthwatch”

Heat of Battle

In my previous post relating to the controversy surrounding the NIH study, I wrote that disagreements were only to be expected. I still stick by those words, yet I – like many – have looked on in some distress since then as angry reactions have escalated to a potentially catastrophic extent, threatening a very serious setback in our battle to expose the PACE trial and win recognition for the true nature of ME.

I myself do not believe that anything any patient has said about the NIH study has been more outrageous than the NIH’s own decision to appoint Dr Walitt as study director. When you put this in the context of the promises made about the study after all the years of neglect and betrayal it is scarcely surprising that some patients have got very angry or that bitter disputes have arisen about how best to respond.

But we must not lose sight of what we hope to achieve. David Tuller and Professor James Coyne have built on years of painstaking work by patients to put us in reach of finally exposing the slick tricks of the PACE trial. It will be tragic if we lose that chance because of a few angry exchanges in the heat of battle.

I think we need to accept that Professor Coyne is the way he is. He fights hard and says what he thinks in no uncertain terms. That’s what makes him such a fearsome opponent for those who are ranged against us. But if we ask a lion to fight for us, we can’t be surprised if he roars in our direction from time to time. If that weren’t his essential nature, he wouldn’t have taken on this battle of ours which nobody else would touch. He has been willing to stand up for truth on our behalf. We need his support and he deserves ours in turn.

No one deserves to have been upset over this. All that anyone was trying to do was to speak up in whatever way seemed appropriate to them to achieve our common goal of true recognition, research and treatments for this devastating, misunderstood, neglected condition. Continue reading “Heat of Battle”

Keep Watching

‘Somatoform disorders’ have reared their heads in the ME-related news recently. First there was the announcement that one of the control groups for the upcoming and eagerly anticipated US National Institutes of Health (NIH) study of post-infectious CFS would be people with ‘functional movement disorder’, a strange choice which has made a lot of ME patients feel uneasy. The NIH explained: “Functional Movement Disorder was chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation.”

But why not compare us with, say, AIDS or MS patients, people have asked? Why choose these ‘functional’ patients? It is difficult to avoid the suspicion that the NIH may be secretly looking for similarities rather than contrasts between people with ME/CFS  and those with this so-called ‘functional’ disorder. And if such similarities are found, what then?

There is, after all, no proof that any condition is ‘functional’ or ‘somatoform’ or ‘psychogenic’ or whatever you want to call it – as Doctor Speedy explains here. These diagnoses are based entirely on the opinion – and in many cases, as we shall see, the presumption – of the doctor. When it comes to such so-called ‘psychogenic’ conditions, otherwise known as ‘medically unexplained symptoms’, evidence-based medicine seems to go out of the window.

So these poor people with movement disorders may have conditions which are no more ‘psychogenic’ than ME is, yet according to the NIH they have ‘clear psychological illness’. So if we have similarities with such patients, what does that mean for us in the eyes of the NIH?

Perhaps I am being unduly suspicious here. There is plenty that seems to be good about the NIH study. It is large scale, it is studying post-infectious CFS (i.e. patients whose CFS started with an infection) and there is going to be a particular focus on the cardinal symptom of post exertional malaise. Continue reading “Keep Watching”

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”