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. Yet many veteran patients who know the NIH a lot better than I do are suspicious – and this suspicion was further fuelled by the extraordinary announcement that the study director would be Dr Brian Walitt, who apparently believes that fibromyalgia and CFS are somatoform disorders. He explains that this is because of the ‘discordance between the severity of subjective experience and that of objective impairment‘.

So here we have the same old wrong presumption all over again: that because there is considered to be inadequate evidence of objective abnormalities, a condition is assumed to be psychogenic, in spite of the fact that this approach has proved to be mistaken time and again since at least the 19th century. As I have described previously, conditions such as epilepsy, Parkinsons and MS have all been dismissed in this way until medical science advanced enough to detect the physical abnormalities which had, of course, been there all along. There is enough evidence already to suggest that this will also be the case with ME and fibromyalgia.

You can find an interview with Dr Walitt in which he describes his bizarre ideas about fibromyalgia in this post from #ME Action, while Jeanette Burmeister provides an in depth critique of the interview here. She says: “rarely have I seen anything less rational”, and you can understand what she means.

Just to give you a flavour of the interview, Dr Walitt says about fibromyalgia: “you’re not sick, bad, or weak, you’re just dealing with the difficulties of being a human” and “what may be required is not saying that fibromyalgia is not real, but finding a new narrative in which to discuss it“. All of which might go down very nicely as part of a school philosophy project but it seems to me it will probably be less welcome to fibromyalgia patients, who may believe that what is required is  research and treatment.

Dr Walitt’s appointment as Director of such an important project is deeply troubling, not least because of what it suggests about the NIH’s attitude to CFS. After all the years of neglect and misrepresentation, did they really think that patients wouldn’t have a problem with this appointment – or was it that they thought we wouldn’t notice?

The ever-optimistic Cort Johnson, however, conjures up a defence of Walitt in his post on Health Rising, remarking ‘it’s best to assess researchers on their broad bodies of work’. He points out: ‘Walitt does not propose altering disease beliefs or mindsets; the problems in these diseases are more entrenched than these simple solutions. Nor does he believe that one can push through these diseases; patients should allow the symptoms produced in them to guide them in their behaviors… He proposes these diseases are immunologically caused and that immunological treatments will ultimately be used to defeat them.’ Which might be reassuring enough, but it’s clear that at the very least Walitt needs to do a lot more work on that ‘narrative’ of his. The trivialisation of ME has fuelled many years of neglect, and wacky ideas about symptoms reflecting ‘the difficulties of being a human‘ are hardly likely to help things along very much.

Such expositions on the human condition might be entertaining for those who write them but they’re of little practical use in the real world. The false dichotomy between physical and mental health conditions seems to be in vogue in the media, but most doctors are too concerned with the realities of treating their patients to have much time for such things – and certainly aren’t about to import them into their practice any time soon. After all, they work in a structure that is organized along dualistic lines. Where I live there’s an entirely separate Trust for ‘mental health’. How is it where you are? Any different?

The truth is that however true the opposing argument may be, most doctors still think along dualistic lines, and the way they categorize your condition can have serious consequences for your diagnosis and treatment. As I’ve discussed previously, the tendency of doctors to dismiss any condition as ‘psychogenic’ if it isn’t fully explained in the textbooks is still prevalent today, not only with ME and fibromyalgia but with many other conditions. Indeed, to judge from this NHS website here in England, there appears to be a presumption that any patient with multiple symptoms has a psychogenic condition. The page is about multiple symptoms, yet its title is ‘Management of Somatoform Disorders’. This gives the impression that the two may be considered synonymous.

The introduction to the page reads: ‘the evidence for effective treatment of patients with chronic multiple symptoms are very sparse‘ but they don’t let this lack of evidence get in the way of making recommendations.

They go on to say: ‘look out for signs rather than symptoms, if necessary a brief physical examination‘. There seems to be no possibility that a thorough medical examination may be necessary.

The page continues: ‘use appropriate investigations to exclude physical cause, but discuss implications of negative test beforehand; avoid tests and procedures unless indicated‘. If this were an open minded assessment, you would expect the implications of negative test results to be discussed at a later stage – like if the test results were negative for instance – while the exhortation to ‘avoid tests and procedures unless indicated‘ seems a bit unnecessary. Why would you do otherwise? But it seems to fit in with the mindset of not expecting anything to be wrong.

I won’t work through the web page line by line. There is all the stuff you might expect to be there about the patient’s ‘illness beliefs‘, ‘psychosocial problems‘ and ‘maladaptive responses‘ but there are three points in particular that I find really chilling. Here they are:

  • Attempt to be the patient’s only physician and to minimise patient’s contact with other healthcare professionals
  • Understand worsening and new symptoms as an emotional communication rather than a manifestation of new disease
  • Build up a therapeutic alliance with the patient’s nearest relative by informing them of the management plan

Taking the last of those first, the idea of a doctor in this situation building a ‘therapeutic alliance’ with the patient’s nearest relative sounds positively Orwellian. This is ganging up on the patient: deliberately setting out to challenge their experience of reality by enlisting the help of their nearest and dearest against them. And they’re quite upfront about it. It’s here on a public website. How would you describe this? Some might say ‘evil’. At any rate it seems likely to risk a very stressful home situation, one which might possibly lead to genuine mental illness and/or a permanent rift in family relations: all to reinforce what is the purely unsubstantiated opinion of the doctor that the symptoms are ‘psychogenic’.

Equally horrifying are the exhortations to keep the patient away from other doctors and to dismiss new or worsening symptoms as ‘emotional communication‘ rather than a new disease. This is surely irresponsible. One of the most important pieces of advice for people with ME is that if you get new symptoms, don’t assume it’s ‘just’ ME, go to the doctor and get them checked out. If the doctor won’t do this, we suggest they try a different doctor. Not to do this runs the risk of a potentially serious and/or treatable condition being ignored. Yet here is this NHS website advising doctors specifically to ignore new symptoms and convince the patient that they are psychogenic – and to keep them away from other doctors in case they have different ideas.

This is ludicrous thinking. If you follow it though to its ‘logical’ conclusion, it is based on the premise that none of these people who have been told they have ‘psychogenic’ symptoms will ever get a physical illness ever again. And if they do, they will be told to ignore it and be kept away from other doctors.

Is this a responsible way to practice medicine?

It seems to me that to treat people with ‘multiple symptoms’ as if they are necessarily psychogenic and to employ the strategies suggested here is outrageous. Many people have multiple symptoms because they have more than one condition, often interacting with each other in unpredictable ways that are not in the text book. As the population gets older because advances in medicine have improved life expectancy, more and more elderly people are going to have multiple symptoms too, because similar advances have not been made in the treatment of chronic illness. Are these people going to be classed as ‘psychogenic’ too? Are they all going to be kept away from other doctors? Are their relatives to be enlisted in the battle to convince them that their symptoms are not what they think they are?

It doesn’t surprise me that some doctors think like this. What does surprise me is to see it set out in plain view on a public webpage. It is is a measure of just how warped the thinking is that they obviously think this is OK and will stand up to public scrutiny. Well, perhaps it is time it was subjected to exactly that. The health advocate who alerted me to this site will be taking action about it locally. Perhaps it should also be addressed on a national level. Maybe when David Tuller and James Coyne have sorted out PACE, they could have a go at ‘medically unexplained symptoms’ as well! It’s another case of outrageous behaviour passing for normal – and I’m not talking about the patients.

And of course it’s the same sort of distorted view of the world that makes the NIH think it’s OK to appoint Brian Walitt as Study Director. I’m sorry to be disrespectful here but I really can’t think of any other way to describe it. And like the somatoform people in Bristol, they think that they can get away with it because nobody’s watching. Even though they’re aware of patient concern, they still assumed that no one would be paying attention. Apparently they have now been shocked to discover that people are watching, that people actually care.

Some patients had already been calling for the NIH study to be abandoned. I really hope that won’t happen. It is too good an opportunity for us to pass up. But it has to be done properly. The PACE trial is an all too obvious example of how bad things get when the interests of patients are not represented as they should be. We have to keep pushing for things to be right. I know that patients have asked for Dr Walitt to stand down. Hopefully that will happen and the NIH will start to really co-operate with patients instead of talking about it then doing whatever they please.

So far away across the water, I am not best placed to understand the full complexity of the NIH situation – or even to keep abreast of all the acronyms – but I am grateful for those who are speaking on our behalf. There have been disagreements between advocates and this is only to be expected.The issue is both important and complex. There is a lot at stake. The main thing is that we have to keep on watching – and make sure they know we’re watching. We may be more powerful than we think. I shall keep abreast of the news through the #ME Action website and I urge you to do the same. There may be letters to write, petitions to sign. We’ll see….

Update: Prof James Coyne has kindly drawn my attention to an in depth critique he wrote recently on a questionable study into psychotherapy intervention for ‘medically unexplained symptoms’. There seem to be parallels with the PACE trial. I’ve discussed it in my response to Polly at the top of the comments on this post.

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8 thoughts on “Keep Watching

  1. Another excellent blog – thank you. The choice of control group certainly seems unusual and I can see why it could ring alarm bells for the ME community. And ditto re the choice of lead clinician. I hope you are right and that the NIH don’t throw away money on a trial which isn’t entirely credible from the outset.

    Meanwhile I am sorry to report that I have been unable to take local action over the North Bristol Trust’s demonstration of the highly controlling behaviour some clinicians feel the need to indulge in. My only avenue was the Advice and Complaints team and they only deal with complaints on an individual basis rather than on general points of policy and management. I was informed that the page had probably been on their site for about two years so it’s certainly time these practices were challenged. But the GMC say they can’t back a public enquiry. Again it seems that they (and the Parliamentary and Health Service Ombudsperson) only work on individual, case by case complaints. I may talk to my local health watchdog but am beginning to realise that each time I approach official bodies about my concerns I get similar responses, broadly along the lines of ‘this is not in our remit’. As a basic rule of thumb I work from the notion that repeating the same actions and expecting a different outcome probably isn’t healthy so I am considering my next steps. All suggestions welcome – especially if they stop me from feeling like I am banging my head against a brick wall. I get quite enough of that sensation from having migraine.

    Somewhat ‘off topic’ (still, stay with me because it could be relevant to the ME trial design) but in the run up to Rare Diseases Day I saw a graphic from RareConnect who had done a survey about what people wanted from rare conditions support groups. The third bullet point out of six read ‘I was misdiagnosed as having a psychiatric disorder when doctors could not identify my symptoms. How do I deal with that?’ I believe this problem of misdiagnosis is not exclusive to the rare conditions patient population (because comments like this are so common on the migraine sites). This leads me to conclude that the misdiagnosis stats for so-called ‘functional disorders’ would merit further scrutiny. Given the diagnostic delays experienced by rare diseases patients, migraine patients and many vestibular patients etc a longitudinal study is necessary. As is an investigation as to whether or not the clinicians are making the diagnosis of ‘functional disorders’ in the approved way. If they’re not, those control group members for the ME trial might want to know about it. So that they can keep watching too.

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    1. Hi Polly – Glad you liked the blog. There’s also another control group: people who have recovered from Lyme Disease. This is another strange choice in view of the difficulty in making a diagnosis of Lyme. Some ME patients suspect that the NIH wouldn’t see a trial that was unsatisfactory from our point of view as a waste of money at all because their intention would be to ‘bury’ ME in the same way they have for decades. I don’t like to buy into conspiracy theories but the truth is I don’t know enough about the situation in the US to say if that’s true or not. Certainly we have highly-placed ‘enemies’ in the UK – enemies in the sense that their best interests do not align with ours – but I shall try to view the NIH trial with as much optimism as I can muster, and I am glad there are many astute advocates over there who can speak up on our behalf.

      Prof James Coyne referred me to a detailed critique he did of a dodgy study into ‘psychotherapy intervention’ in MUS. He calls his critique ‘Stalking a Cheshire Cat’ – it may interest you:
      http://blogs.plos.org/mindthebrain/2016/01/13/stalking-a-cheshire-cat-figuring-out-what-happened-in-a-psychotherapy-intervention-trial/

      He sums things up as follows: ‘The study that I will review twice switched outcomes in its reports, had a poorly chosen comparison control group and flawed analyses, and its protocol was registered after the study started. Yet, the study will likely provide data for decision-making about what to do with primary care patients with a few unexplained medical symptoms. The recommendation of the investigators is to deny these patients medical tests and workups and instead provide them with an unvalidated psychiatric diagnosis and a treatment that encourages them to believe that their concerns are irrational.’

      Sounds like there are parallels with the PACE trial.

      You mentioned ‘whether or not clinicians are making the diagnosis of ‘functional disorders’ in the approved way’. Prof Coyle comments on the fact that this particular study refers to ‘abridged somatization disorder’.

      He says: ‘The brief introduction displays a decided puffer fish phenomenon exaggerating the prevalence and clinical significance of the unvalidated “abridged somatization disorder.” Essentially, the authors invoke the problematic but accepted psychiatric diagnostic categories somatoform or somatization disorders in claiming validity for a diagnosis with much less stringent criteria. Oddly, the category has different criteria when applied to men and women: men require four unexplained medical symptoms, whereas women require six.’

      He continues: ‘I haven’t previously encountered the term “abridged” in psychiatric diagnosis. Maybe the authors mean “subsyndromal,” as in “subsyndromal depression.” This is a dubious labeling because it suggested all characteristics needed for diagnosis are not present, some of which may be crucial… References to symptoms being “subsyndromal”often occur in context where exaggerated claims about prevalence are being made with inappropriate, non-evidence-based inferences about treatment of milder cases from the more severe.’

      So it seems like they made this specific diagnosis up.

      It’s hard to guess why women and men need a different number of symptoms to qualify. You might surmise that more symptoms might be needed to qualify for a full ‘unabridged’ diagnosis. I’d be willing to guess, though, that many patients find themselves with an MUS diagnosis with fewer symptoms than six, or even four, just because they happen to be bugging their GP.

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  2. Another great piece Simon.That NHS page strikes me as encouraging malpractice, and I think that legal advice should actively be sought. I think that Phil Shiner at Public Interest Lawyers, is the man most likely to win a test case on this.  http://pil.uk.net/?page_id=84
    The link actually is to a contact form. It might be enough to just to write an intro, and then put this blog post in. I used to know Phil in FoE before he set the firm up, and he’s a very sharp and astute man. (He won’t remember me, but I tried to get a planning test case through via him, but my local ‘argrieved farmer’ chickened out after I’d produced reams of paperwork, and we couldn’t object on behalf of the whole community. 😦 Doctors have been using that ‘divide and rule’ technique for a long time. They broke up what I had thought was a lifelong relationship, by taking away the support of the one person I really needed to believe in me. It caused so many arguments: the last thing anyone needs when they’re ill. Sorry that I’ve not read the earlier piece you sent me for comment yet. I wanted to do it on pc, but I’ve not been able to use it for a couple of weeks.Good to see you’re on form! S

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    1. Thanks, Steve. I’ll pass the message on re Phil Shiner. Really sorry you were the victim of ‘divide and rule’ in that way. An entirely forseeable consequence of that kind of tactic on the part of the very people whose job it’s supposed to be to help. You can see how all this has come about. GPs get fed up with ‘problem’ patients so it suits them to be able to send them off for a nice cosy chat with a therapist to convince them that nothing’s wrong. But so often it doesn’t turn out like that. Patients find themselves being treated with disdain and having close relationships put at risk or destroyed because of ‘divide and rule’ (as you have found to your cost), plus having their diagnosis delayed, sometimes with fatal consequences. All to save the doctor admitting they don’t know what to do. It’s crazy. Patients in general have great respect for doctors, respect which I believe would only be enhanced if they were simply honest about their limitations.

      No problem re your comment on that other piece I sent – no hurry!

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  3. Incidentally: that ‘must stick to signs’ thing is a red herring too. Doctors won’t look at signs and they then take the piss out of your attempts to make them look. I even logged, grouped, and photographed mine to make it easy for them, but they literally shy away if I try to show them.‎ My illness has always been obvious: I blow up like a beachball at the slightest bit of muscular effort. Most of them just think this excruciating fact is funny.

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