OK, here’s my take on the Freedom of Information Refusal Notice which came out a couple of days ago, not to be confused with the Tribunal outcome which (as I write) is expected imminently. Apologies for the fact that it’s about twice as long as it should be but I now have brain fog so I don’t have the intellect to edit it down! If you manage to read it, I hope you find it of interest. Me, I’m going to get some sleep….
The latest PACE Trial Freedom of Information Refusal Notice causes particular concern, not only for the PACE Trial and its implications for the future prospects of people with ME/CFS, but also for the Freedom of Information Act itself – and even for freedom of speech. The Notice incorporates twelve pages of repetitive arguments from QMUL (Queen Mary University of London, home of the PACE Trial) and three pages of what seem to me to be concise and clearly argued response from ‘the complainant’ (i.e. the guy who has made the request for information). Unfortunately, the Commissioner then goes on to reject the latter in favour of the former, apparently believing every word that QMUL have told him, i.e. that patients have launched a concerted campaign to discredit the PACE Trial by submitting a burdensome number of FOI requests in the desperate hope of finding something wrong with it and in the meantime bringing Lead PACE Investigator Prof Peter White and his staff to their knees under the resultant administrative load so that they aren’t able to do any more of their vital research. Or something like that. Their evidence is not so much a linear argument as a trip several times round the houses in the hope that if they say the same things often enough, some of them will eventually convince the Commissioner. Unfortunately, this strategy appears to have been successful.
The information the complainant requested relates to the data from the step test, an objective outcome measure which went unreported in the original PACE report but appeared in the form of a small scale graph in an appendix to one of the follow up studies. Continue reading “Closing the Door on Freedom”
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”
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”
‘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”
- It’s all about fatigue.
- There are no distinctive symptoms
- There is no evidence of physical abnormalities
- It may not even exist
- Most people recover
- People with ME don’t want a psychiatric diagnosis because of the stigma
- Because we don’t have enough stigma already from having ME
- People with ME are scared of exercise
- You need more exercise
- You need more fresh air
- You’ll get better by fighting it
- You’ll get better if you think positive
- You’ll get better if you push on through the pain
- You’ll get better if you stop wearing shoes
- All your friends will understand
- If you can do something today, you can do it tomorrow
- You look as well the rest of the time as you do for the one hour a week when you see your friends
- I feel like that as well
- That’s how I feel on a Monday morning
- That’s how I feel on a Friday night
- You should have got better by this time
- You have to keep going
- You can’t let people down
- You’re probably just feeling stressed
- The doctor will know what to do
- Doctors are trained in ME
- You’ll be pleased to know that your bloods are normal
- We need to avoid extensive testing
- You wouldn’t get upset like that if you weren’t depressed
- Anti-depressants will make you better
- If you go to an ME clinic, you’ll see a doctor
- Oh yes, we all think it’s a physical illness here at the clinic
- Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) will make you better
- GET is perfectly safe
- Proven physical intolerance to exercise can be overcome by doing more exercise
- You’ve recovered if you can walk as far as patients with congestive heart failure
- If you don’t finish the course of GET then of course you must be recovered
- If you don’t attend appointments and we never hear from you again then of course you must be recovered
- If GET doesn’t cure you and you’ve told us so then you must have ‘illness anxiety’ instead
- Or one of numerous other ‘psychogenic’ conditions we’ve invented – you can take your pick
- We don’t rediagnose people to massage our outcome figures – that’s just a by-product
- Dividing illnesses into ‘physical’ and ‘non-physical’ is a mistake that patients make, not doctors
- People get ME because they want to be perfect
- It’s the patient’s fault
- It’s the parents’ fault
- You are making your children ill
- We have to set goals for your children
- Your children are safe with us
- Calling trials on children cute names like ‘Smile’ and ‘Magenta’ makes them less inherently evil
- The PACE trial is excellent science
- Eminent Consultant Psychiatrists can always be trusted
- If you use CBT to convince someone they’re not ill and they say they’re not ill, that’s classed as recovery even though they’re just as ill as they’ve always been
- This is one of the most robust findings about ME
- We’ll release our data but not to patients because their illness is nothing to do with them
- We’ll release our data as soon as we take the names off the anonymised data sets
- We’ll release the data when we’ve finished studying it (which we never will)
- We researchers get itchy about releasing data due to research parasites
- We at the PACE trial take confidentiality very seriously which is why we kept the data in unlocked drawers.
- People with ME are too vociferous for their own good
- We can’t get people to study ME because of the death threats
- It’s safer for psychiatrists in Afghanistan
- Why are you attacking us? We’re the very people who are trying to help you
- Sir Simon Wessely has to live in an iron bunker at the bottom of Loch Ness
- Some ME militants have to be chained up or they’ll savage passers by.
- There’s just not enough psychologists studying the lifestyle of people with ME
- There must be some secret, sinister reason why people with ME tend to stay at home and use the internet a lot
- Probably the same reason they don’t buy many shoes
- As soon as we understand these things, we’ll know a lot more about the causes of this illness.
- This helped me so it must help you
- If you buy one of these you’ll get better
- You look so well, you must be getting better
- You must feel better – you’ve slept so much
- You never sleep so you can’t be tired
- You must have a low pain threshold
- You should try taking a paracetemol
- You caught it off the internet
- You don’t have to know the first thing about ME in order to write about it
- This latest development has finally proven it’s not just ‘yuppie flu’
- So that’s all right then
- If you read something often enough in the papers, it must be correct
- The Science Media Centre is an accurate source of information
- Science journalists always look critically at the studies they report
- Especially in the UK
- ME is partly physical and partly psychiatric because that’s what the book I’m writing is about
- If you want to understand a neurological condition, the best person to ask is a sports physiologist in Cape Town
- If I write an article about how people with ME are too lazy to get out of bed and spend all their time out in the streets shooting psychiatrists, I’ll look really clever and no one will complain
- ‘Chronic fatigue’ is another name for ME
- All people with a diagnosis of chronic fatigue syndrome (CFS) have the same condition
- So it makes perfect sense to compare patients in different studies – even though they’ve used different diagnostic criteria
- And to apply the findings to all people with a diagnosis of CFS even though some of them have ME and some of them don’t
- And with so many different diagnostic criteria already in use, it can’t do any harm to invent another one from time to time for no apparent reason, can’t it?
- All of which is very straightforward and not confusing at all
- People with ME have no reason to get upset
- You can’t just get an infection one day and never get better, so you spend the whole of the rest of your life being ill
- It could never happen to you
- ME is not serious
- ME does not devastate lives
- ME is never fatal
- ME never leaves you stuck in bed, unable to sit up, tolerate light, or communicate with the ones you love
- If you ridicule people with ME for making a fuss they’ll stop doing it
- It’s OK for things to go on the way they are.
Footnote: All the above statements are WRONG (unless I missed some, in which case please tell me!) I’ve mixed deadly serious stuff with stuff that I think is funny, which is always a bit precarious, so if I’ve offended anyone I didn’t intend to offend, I apologise.
I was prompted to write this by the recent extract from Jo Marchant’s book ‘Cure’ in The Observer, in which she repeated many of the misconceptions about ME I’ve already dealt with in previous posts. It seemed a bit dull just to say it all over again, so I thought I’d do it a different way this time.
If there’s any similar misconceptions about ME you’d like to share, please feel free to do so, either in the comments to this post, in tweets to me at @spoonseeker using the hashtag #MEmisconceptions or anywhere you like.
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”
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”