By David Tuller, DrPH
One of my goals next year is to write more about so-called “medically unexplained symptoms,” also known as MUS. The term MUS might be useful as a descriptive name for the large category of phenomena that lack a proven pathophysiological pathway. But in the medical literature, and in the minds of those who present themselves as experts in the field, it is framed as an actual diagnosis that can be delivered with full confidence rather than a provisional construct based on the current state of medical understanding.
Different specialties have their own sub-categories of MUS. In neurology, these are called “functional neurological disorders,” or FND. This term has generally replaced older ones for this concept, including “conversion disorders” and “psychogenic disorders.” As with MUS overall, the evidence for these conditions has resided primarily in the absence of standard signs indicating organic dysfunction. The phrases “conversion disorder” and “psychogenic disorder” mean exactly what they say–the idea is that unexpressed psychological distress is transformed into physical symptoms, although how this “conversion” would occur is not really clear.
In contrast, FND is considered a kinder, gentler phrase. It does not automatically convey the notion of a psychiatric disorder, so the presumption is that the diagnosis is more likely to be acceptable to patients, who can resist being told they do not have an organic illness. The field of neurology has also taken to analogizing FND to “software” rather than “hardware” problems–the latter referring to known neurological disorders with recognized mechanisms. But as with MUS, FND appears to be deployed as a definitive diagnosis rather than as a tentative acknowledgement that doctors simply cannot at this moment pinpoint what the hell is going on and what is generating the troubling symptoms.
A 2018 paper–“You’ve made the diagnosis of functional neurological disorder: now what?” —generated some recent discussion on the Science For ME forum. The authors were affiliated with the neurology and/or psychiatry departments at Harvard Medical School and Brown University, and the paper appeared in Practical Neurology, a BMJ journal. The paper did not raise concerns about the epistemological foundation of the FND category but advised clinicians on how to “enhance diagnostic acceptance and address patients’ doubts.” In other words, patients apparently have a tendency to reject diagnoses that presume their symptoms do not have an organic explanation.
The paper included a statement that triggered my interest; specifically, the authors noted that “there have been significant advances in the diagnostic approach for FND, emphasising a “rule-in diagnosis based on neurological examination and semiological features.” Hm. What evidence now exists that would allow for a “rule-in”diagnosis of FND, as opposed to diagnosing it solely after ruling out other causes?
One of the cited references was a 2013 paper called “The value of ‘positive’ clinical signs for weakness, sensory and gait disorders in conversion disorder: a systematic and narrative review.” This review, from Swiss researchers, was published by the Journal of Neurology, Neurosurgery and Psychiatry, another BMJ title. Its findings demonstrate the paucity of the evidence behind assertive pronouncements that physical symptoms must have non-organic or psychogenic origins.
Here’s part of the abstract from the review:
“Experts in the field of conversion disorder have suggested for the upcoming DSM-V edition [Diagnostic and Statistical Manual of Mental Disorders, whose fifth edition was published shortly after the review] to put less weight on the associated psychological factors and to emphasise the role of clinical findings. Indeed, a critical step in reaching a diagnosis of conversion disorder is careful bedside neurological examination, aimed at excluding organic signs and identifying ‘positive’ signs suggestive of a functional disorder. These positive signs are well known to all trained neurologists but their validity is still not established.”
The last sentence is telling. I’d rephrase it like this: “Neurologists are all trained to recognize these ‘positive’ signs that can identify people with conversion disorder, and we are certain that these signs can identify people with conversion disorder. Unfortunately, we have no actual evidence that these signs can identify people with conversion disorder.”
The review reports a growing demand for proof of claims that symptoms are not organic beyond the clinician’s failure to identify a pathophysiological cause. Diagnoses in this domain are now expected to be based not just on the lack of evidence for known diseases but also on the presence of clinical findings purportedly characteristic of FND. As the authors write, “This distinction [between organic and functional disorders] is based on the exclusion of neurological signs pointing to a lesion of the central or peripheral nervous system, together with the identification of ‘positive signs’ known to be specific for functional symptoms.”
This emerging evidentiary demand presents neurologists and other clinicians with something of a dilemma, according to the review. As the authors note, “In the era of evidence-based medicine however, clinicians are facing a lack of proof regarding the validity of those clinical ‘positive signs.’”
Uh, oh!
First, it should be noted that clinicians faced this “lack of proof” long before “the era of evidence-based medicine.” The difference is that in previous years they presumably did not confront the same demands for documentation of these unsupported claims. Under the present circumstances, it is not clear why neurologists and psychiatrists retain such confidence in their pronouncements that some physical symptoms are of non-organic origin. This approach to medicine–making dogmatic declarations and diagnoses despite minimal or no valid evidence–is suggestive of the state of mind known as “emperor-has-no-clothes-ism.”
The review concludes that eleven studies have provided “some degree of validation” for 14 “positive” signs, such as involuntary reflexes, for FND in the categories of “weakness, sensory and gait disorders.” Ten of these eleven studies included 23 or fewer subjects identified with FND. One study included 107 patients identified with FND. In ratings of study quality per the American Academy of Neurology’s classification system, nine of them were designated as Class III–the third out of four grades of quality. Only two included blinding. None included information on inter-rater reliability of these “positive” signs, raising the chances of inconsistencies in how data were interpreted.
According to the authors, overall these “positive” signs have low sensitivity–meaning they would miss many of those who supposedly suffer from FND. The review reports that, in contrast, these signs generally have high specificity–meaning those identified are likely to have the disorder in question. But the review’s account of its own limitations makes clear that even these findings of high specificity cannot be taken at face value.
As the authors write: “As no gold standard exists for functional weakness, sensory and gait disturbances, precise diagnostic criteria on how a diagnosis of functional disorder has been made are not always provided [in the studies reviewed] and wrong attribution of subjects could have occurred. More importantly and more likely, this could have introduced a circular reasoning bias (self-fulfilling prophecy): if the studied sign is also used in the diagnosis process, the reported specificity is overestimated.”
That passage raises a critical point. In studies included in the review, it is possible or even likely that some or many participants were diagnosed at least partly based on “positive” signs that all trained neurologists apparently interpret as suggestive of FND. If that’s the case, then it would not be surprising that assessing the presence of these same signs among these patients would result in high prevalence rates and high specificity. As the authors themselves suggest, this would mean that claims about the diagnostic usefulness of the signs were the result of a self-fulfilling prophecy.
And yet, despite these serious caveats, the study wholeheartedly recommends these signs as helpful tools for diagnosing FND. (The study makes other points as well, of course: about the need for better quality studies to further validate these and other signs for FND, etc.)
From this and related studies, it appears that some neurologists and psychiatrists are engaged in a spirited search for robust data to prove their claims about FND–even as they continue to present these claims as unchallenged knowledge, not as the hypotheses and speculations they actually are. This backward approach to science–seeking evidence for what you have already asserted as fact–strikes me as very Trumpian.
Comments
20 responses to “Shaky Evidence for Signs of Functional Neurological Disorders”
Another worrying feature of MUS is that its proponents often suggest undertaking clinical assessments should be avoided as it reinforces patients false beliefs that they have a biomedical rather than a psychiatric condition.
Given MUS is a diagnosis of exclusion with incredibly diverse physical symptoms, I am unsure how it is expected to identify it without allowing any meaningful exclusion process.
One could argue with equal logic and perhaps more evidence that refusing to undertake medical assessments reinforces these physicians false beliefs that MUS is a specific unitary psychiatric condition.
On the basis of the history of medicine it is strongly arguable that physicians have in the past more often misdiagnosed physical conditions as psychological than the reverse. One wonders how many preventable deaths will be required before the internal logical problems of this approach are acknowledged.
An unquestioned dogma in medicine is that any symptoms that cannot be explained with current technology and knowledge have a psychological origin. This belief then leads physicians to create a variety of constructs such as functional neurological disorder, or bodily distress disorder, conversion disorder and so on.
There seems to be approximately zero reliable evidence for this, despite the widespread application of this idea. Why is it so difficult to say that medicine does not have an understand of, and an answer to everything yet? I think patients would appreciate the honesty, and it would help create the necessary conditions for research to take place that can reveal what is actually happening.
I’m very glad to see you attack this subject matter head on. Neurology (as I understand it from a very impeccable source) has long been the laughing stock of the medical profession.. neurologists being seen as failed neurosurgeons in the main. I guess that’s rather cruel and perhaps there are exceptions to this low expectation of the profession, but I have yet to meet one.
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Neurologists seem not only to spend far too much time trying to shoe-horn in phoney evidence to fit their flimsy gas-lighting preferences but also seem to spend a great deal of energy trying to ensure patients do NOT get the tests that they deserve, and which are regarded as gold standard in the general literature, for fear of ..well what exactly? For fear of proving their own prejudices wrong perhaps? My own long travails in attempting to get a punch biopsy to rule in or out SFPN being a case in point.
My local ‘SFPN Expert’ has refused me a punch biopsy via an NHS referral despite my presentation suggesting one ought to be performed and also (prior to that refusal) fleeced me of £300 via a private consultation ( I had made my desire for punch biopsy as being the sole reason for seeing him in a very detailed email in advance of the appointment) trying to dissuade me from having a punch biopsy on the basis that ‘people like you’ don’t have positive punch biopsies and so we don’t offer them! Go figure! If you never look you’ll never find (and in the US they are looking and they are finding!) This is the level of stupidity and anti-science at which neurologists seem to largely function.
I have no idea if having a punch biopsy will be positive or negative.. weirdly I cannot predict that result just by looking at myself … isn’t that strange? But obviously ‘SFPN Experts’ are able to assess this using some superior power of theirs … aren’t they clever? I have been told that negative nerve conduction studies could rule out SFPN… that is a lie. I know it’s a lie from various sources… not only the rather compelling work from people like Anne Oaklander @ Harvard but also from the pathology lab at KCL who actually carry out the histology on samples from punch biopsy.
This is just one example of how someone who has read the literature and knows what good practice is supposed to look like can be treated. But what about the many who haven’t already lived decades of being abused by modern medicine and are only now finding their health failing and are thus searching for answers that can help them? I see so many newly diagnosed patients enthuse on social media about what a relief it is to get a proper diagnosis at last! And what *is* that diagnosis?: FND. FND patients are given websites to visit to understand what their diagnosis means. This gives credence to what is essentially yet another lie: a fake diagnosis borne of ruthlessness, cruelty, stupidity, unscientific ignorance and ego from a so-called ‘profession’ that cannot admit that it doesn’t have answers … that cannot say ‘I’m sorry I don’t know what’s wrong with you’ .
This situation is not limited to ME nor to neurology of course. FND is just one long arm of MUS. Anyone accessing any sort of ‘care’ at any level, be it privately or via the NHS, is at the mercy of this mindset.. Doublespeak at its worst, because it removes the voice of people at their most fragile.
For myself I will get carry on. I will get my punch biopsy. I hope it’s negative because a positive result does not augur well at all. If it is positive then I’ll be considering my options. When neurology consultants are not up to date with the literature in their field they contravene GMC guidance. I will consider my experiences within the light of that guidance. We have to start fighting back as best we can. Thank heavens David Tuller is going to expose this… it’s a scandal that is far far bigger than the average Joe can begin to imagine.
Perhaps it’s worth investigating whether those labelled with MUS &/or FND would be exclusionary when claiming Medical Health Insurance or Social Security?
The oxymoron for those diagnosed with M.E., then labelled with MUS or FND, is the British Commonwealth blood donation policy. Anyone with a historical diagnosis of M.E. (or even the MUS precursor [Oxford] CFS) are prohibited from blood donation for life, even if considered recovered. Surely, a so-called Conversion disorder, by any name, shouldn’t permanently prohibit blood donation? https://www.transfusionguidelines.org/dsg/wb/guidelines/ch013-chronic-fatigue-syndrome
I propose the concept of FAES: false attribution error syndrome. It affects many in the medical profession and symptoms include asserting opinions as facts without evidence, lowering the bar for evidence to zero, dismissing everything reported by patients (unless it confirms the false attribution, then it is irrefutable), reversing causality in arguing the consequence of is the cause of and mindlessly speculating on cherry-picked correlations as obvious causation.
There is currently an epidemic of FAES within medical institutions and although it has no measurable impact on those affected, it is responsible for a human rights disaster of choice, senseless destruction of human life without accountability or even basic respect for the lives it destroys. Unfortunately, the victims of this are without recourse, as FAES causes selective deafness upon hearing any evidence of its many failures.
Medicine practiced without either science or humanity is useless. This example will be studied for a long time, a form of mass delusion confirming that it is possible in life to roll high on intelligence and so low on wisdom as to make that intelligence entirely useless.
To protect against this, medicine needs to adopt basic human rights, enforceable and with due process. Sick people need protection against predatory physicians and those afflicted by FAES. There is no consent involved, in fact FND sees no need for and openly debates how to make sick people accept fictitious explanations, and no accountability, often not even basic records.
It’s a sad fact that medicine actually ranks below even many flawed legal systems in upholding basic human rights and can sometimes give no importance whatsoever to the people it inflicts ideologies on. At least in the early days of FND, around the early 20th century, there was genuine ignorance to blame. Today this is simply indefensible, there is no justification for amoral medicine.
Thank you, David.
This is an important issue, not only because of the reasons you mention, but also because of the extent of deliberate deception that surrounds presenting a diagnosis of FND to patients. As you know, scientific articles have been published which explain, to neurologists and other doctors, how to do this without the patient realising that FND is the new name for Conversion Disorder, categorised in DSM-5 (Diagnostic and Statistical Manual of Mental Disorders). This is in order to placate the patient and stop them from protesting that their symptoms have an organic cause.
As you say, phrases such as ‘It’s a software rather than hardware problem’ and ‘The science is evolving’ abound, and are often repeated by patients, but when neurologists, psychiatrists and other medical professionals talk about FND they all understand that they’re talking about Conversion Disorder.
I have heard first hand reports from people with a diagnosis of ME being told that their symptoms are actually FND. The neurosymptoms.org website does now differentiate CFS/ME from FND, in the fatigue section, but then directs ME patients to a website that promotes the Lightning Process!
Even setting aside the lack of evidence for this diagnosis that you’ve highlighted, this deception, justified by some health professionals as being of benefit to the patient, is wholly unethical. The relationship between medical practitioner and patient should be an equal one, working together towards the same aim with honesty and openness. This superior ‘doctor knows best’ attitude has no place in modern medicine.
When a diagnosis of FND is made, which presumes that there is no organic cause for symptoms, patients are left in limbo with no further investigations that might, eventually, explain what they’re experiencing. Where have we seen this before?
Today’s proudly ignorant psychobabblers are descended from a long line of rainmakers and conman witch doctors who exchanged coins for magic hand-waving. Why aren’t competent physicians and academics embarrassed by this obvious rubbish?
Human societies have moved past sacrificing virgins to appease volcanoes (the volcano quit belching smoke, so it worked). But sacrificing patients on the alter of Ego and Profit is still fine and dandy. It needs to stop. Now would be nice.
Psychobabblers insist their treatments “work”, so where is the data? Oh, there isn’t any? The dog ate it? OK, then come back when there is some. Until then, go away.
Some people think that funding of psychobabble research should stop. Personally, I would be fine with paying them to stay home and shut the hell up. Even that would be a huge improvement.
MUS is a tool for the Psychiatric Collaborative to provide broad based scientific bias on a grand scale.
Thank you, David. An illuminating look into the Alice in Wonderland world of MUS, FND and related constructs!
I remember reading an article by Stone & Sharpe where they first recommend using Hoover’s sign to detect functional muslce weakness, even though, in the same article they mention that there is no strong evidence for its use.
I found that rather bizarre.
Here’s the article (from 2001):
https://pn.bmj.com/content/1/1/50
This paper –
Stone J, Carson A, Sharpe M. Functional symptoms and signs in neurology: assessment and diagnosis. J Neurol Neurosurg Psychiatry. 2005;76 Suppl 1(Suppl 1):i2–i12. doi:10.1136/jnnp.2004.061655
– showcases a lot of what is wrong with FND, I think. For example, the authors suggest that if patients have a history of surgery, such as appendicectomy, hysterectomy (at a young age) or laparoscopy, then this might point towards them having a history of functional disorder/s. Unproductive or unnecessary surgery couldn’t possibly be due to a failure of medicine and medics to diagnose, investigate or treat patients correctly, could it? Instead the patient is labelled with psychological or psychiatric problems and acts as scapegoat for the system’s failures, but then medicine has a very poor track record in monitoring and investigating its own failures, and in apologizing for them.
Many neurologists appear to have an absolute belief in the infallibility of medicine and in what they’ve been taught, and seem incapable of acknowledging the limitations of their knowledge or the existence of grey areas in medical science. Even when abnormalities are found it’s been my experience that some neurologists will pass them off as ‘incidental’ findings rather than try to see how they might fit with the presenting symptoms, thus demonstrating a complete lack of scientific thinking.
I concur with what Richard Vallee wrote above – “Medicine practiced without either science or humanity is useless. This example will be studied for a long time, a form of mass delusion confirming that it is possible in life to roll high on intelligence and so low on wisdom as to make that intelligence entirely useless.”
Thanks for that gem, Richard, and thanks for the blog, David. MUS seems to be really wreaking havoc in the NHS in the UK now with patients in debilitating pain being discharged from A+E without thorough investigation or diagnosis. I’ll look forward to future instalments on this topic.
Another great piece and very helpful in allowing me to understand these poor misguided creatures and their unhelpful beliefs.
I realise that people may think I am being hyperbolic here but I am genuinely starting to suspect, based on all I have learned and what I am witnessing in the political sphere that this is somehow becoming an intentional cull. This is coming from a distinctly British viewpoint at the moment though. I look forward to reading everyone else’s comments as I invariably learn a lot more from my fellows.
As a visual artist working with ideas surrounding medical gaslighting – this article has made my new year’s eve. You succinctly outline everything I’ve been banging on about ever since being “diagnosed” a year ago and then thankfully recently “undiagnosed” with “functional overlay”. Thank-you and wishing you a very happy 2020 indeed.
For ME/CFS the FND neurosymptons,org are referring ( spinning ) to Vogt and recovery stories,
Thats odd. Specially after the Pace trial debacle in the UK
http://neurosymptoms.org/fatigue/4594358000
In addition:
And here is why there are only recoverystories on Vogt’s recoverynorway. You only can become a member if you recovered. “Maybee others can learn from it.” Great selection bias.
https://www.recoverynorway.org/become-a-member-recovery/
“And here is why there are only recoverystories on Vogt’s recoverynorway. You only can become a member if you recovered.”
It should be noted that they use the term “recovered” very liberally in Recovery Norway. As long as you define yourself as recovered you are, according to their philosophy. You don’t have to be working, and a lot of the “recovered” members of the group aren’t. Some work part time in very flexible job situations, others are still on full disability. Yet still somehow they’re counted as fully recovered. It reminds me of the way the PACE authors defined recovery.
Delighted to read this interesting and insightful blog about ‘functional’ (or insert whichever euphemism used by medical professionals you find acceptable – none of them work for me, least of all ‘hysteria’) symptoms. Having followed the history of what I refer to as ‘deliberately deceptive, dangerous dumbing-down double-speak’ for some time, I have some observations.
1. Clever trick to lower the entry criteria for a ‘conversion disorder’ label by removing the need for a ‘life event’ when making this dx. Predictable outcome? Over- and mis-diagnoses of ‘FND’.
2. Nuther clever trick: if someone questions the ‘conversion disorder’ dx, they are told that rejection of the dx is one of the symptoms. Yeah, right.
3. When I was diagnosed with vestibular migraine, similar analogies were made re software and hardware as are made with ‘FND’, but without any of the psychobabble 🙂
4. Regarding some of the comments on the ME Science site, I agree that the ambiguity regarding the term ‘functional’ is intentional (see “the function of ‘functional’” ffi. Worth noting that this paper was sent to me by someone who was misdiagnosed with ‘FND’ for 15 years. Yes – fifteen. When she was eventually diagnosed with vestibular migraine she asked how she could record the misdiagnosis and was told it was ‘just an opinion, not a formal diagnosis’. As she said ‘if no-one is held accountable, this isn’t going to stop.’)
5. Jon Stone (Mr ‘hysteria’/’FND’ in the UK) is also behind another rebrand; that of postural phobic vertigo (‘phobic’?? ugh) to Persistent Postural Perceptive Dizziness (PPPD/triple pd) which is a common misdiagnosis for the rare neuro condition I have (motion triggered Mal de Debarquement Syndrome/MdDS) and the common one (vestibular migraine). PPPD is a virtual identikit of ‘FND’ (but with added ‘hysteria’) and is, predictably, similarly over- and mis-diagnosed, especially since honorary prof Stone inaccurately positioned it as the most common ’cause’ of dizziness, which it isn’t. Like ‘fnd’ PPPD is also not a dx of exclusion and can be made on first presentation (especially if the referral note mentions a previous episode of ‘dizziness’, making people with episodic MdDS more susceptible to mis-diagnosis). This all serves to put pressure on clinicians to make this diagnosis without question which concerns me since PPPD is considered (by the ‘FND Community’, whoever they are) to be ‘functional’ even though – according to hon prof stone – the main symptoms are not.
6. The resulting mistreatment (in all senses of the word) and loss of data about other motion sensation/balance conditions and causes is unpardonable. However this is a weak spot in the ‘functional’ chain so could be useful to those who are working to debunk ‘functional’.
7. Medical gaslighting is encouraged by some of the UK proponents of ‘FND’ and that’s not OK. Likewise it is not OK for academics to be rewarded with honorary titles when they list ‘hysteria’ as one of their research interests.
8. I am grateful to academics who are beginning to explore labels like ‘functional’ eg here: https://doi.org/10.3390/healthcare7040114
9. My UK based physio doesn’t read referral notes because if they mention ‘functional’ it can colour the way she thinks about patients and she doesn’t want to work like that. Having discussed this topic with her, she now thinks use of the ‘f’ word tells her more about the person who wrote it than it does about her patients.
10. I’m interested in what percentage of the ‘fnd’ dx is made on the basis of the referral note and whether this has changed since stone wrote that damning ‘bare essentials; functional symptoms in neurology’ paper. Once we know this, we’ll know how much weight to put on the ‘positive’ signs used for the ‘fnd’ dx.
11. I know Wilshire and Ward have published recently re ME/CFS and hope that helps with David Tuller’s investigations re ‘functional’ although there is also plenty of anecdata available from the rare conditions world regarding the harm it can do. Dr Judy Stone (in the States) might want to collaborate with this important work 🙂
12. David – please feel free to email me if I can help in any way. I have an, erm, interesting document (about when to dx ‘MUS’) which might be of interest to you, for example 😉
Good to see this gaslit red herring chase getting the critical exposure it is badly in need of. So many critical faculties have been suspended while the emperor is so proud of the clothes he made.
Reading the comments, I find that I have not heard of ‘SFPN’, and nor has Wikipedia (rarely lets me down!). Sounds like a sunscreen. :/
Also love the coining of ‘anecdata’: hope it catches on. (y)
A couple of points/observations to add:
I get the distinct impression that a large percentage of all neurological diagnostic and research effort has been diverted onto trying to prove the bona fides of this patient blaming neologism. While this mirage is being chased, research into improving the ‘arsenal’ of real physical measurement apparatus and test methods, that could quantify the small neurological defects that are all too troublesome to patients, but are undetectable with the crude battery of test equipment that is available to most hospital neurologists today. When talking with–at least the younger–neurologists, one finds they are all aware of the dearth of tests they have to help with their diagnoses, so it is quite disturbing how confidently their superiors hand out pseudodiagnoses based on the same lack of knowledge.
In some cases, it is easy enough for patients to devise their own ways to gauge fine motor control defects as they get steadily worse. For example: when I first got a BlackBerry, I used to spend way too much time ‘playing’ ‘Brick Breaker’, which is a game designed to improve dexterity and control of a small trackpad pointing device. I used to get quite high scores in this ‘dexterity test’, but I cannot play it at all now. The fine motor control of my thumb it nothing like it was, even though it gets plenty of exercise when typing these comments.
I’ve suggested to neurological testers, that, rather than wait for ever for the national neurological hospital to reply to their requests for consultation and a chance to get at better test equipment, they must, surely, have set up their own fine motor control assessment, based on controlling a trackpad, I am very surprised that, in the age where such things are ubiquitous and dirt cheap, neurological ‘research’ has not thought of testing us with them! They prefer to remain the wise monkeys, and only find more elaborate ways and words with which to blame the patient.
Another aspect to all this ignorance, which is only now really becoming apparent to me, is just how much the ignorance and impotence in diagnostics that we experience, is actually built into ‘the system’ as a relic of the demarcation ‘lines’ laid out between the professions: I knew for example, that doctors must swear ‘not to cut with the knife’, and correspondingly, surgeons call themselves ‘Mr’ not ‘Dr’, and I knew that the medical specialists–gastro, ENT, urogenital, cardio, etc.–seemed to be frustratingly ignorant or research in neighbouring fields that might have bearing on their own, but I did not suspect that these consultants have been actively discouraged from reading across the fields! Some have lamented to me that there are no generalists, who possess the lateral knowledge that would make diagnosis of multi system affecting disorders so much easier, but, only recently have I suggested they can now read across the fields easily thanks to open access on the Internet, and been told that they are not allowed to! I have found myself in a position where a consultant picks my brains for mechanisms, when a drug prescribed in the ‘urological’ sector, is beginning to be applied in the ‘metabolic’ sector, in which case, it could be doubly useful for me, and better than the drug currently being prescribed.
At every opportunity I get, I tell medical people that I’m pushing for multidisciplinary diagnostic services, and I tell them how easy it is to use the hyperlinking and indexing system of the Internet, to follow diagnostic thought chains across disciplines, so that one can train oneself to be a general diagnostitian, even before that is an official ‘thing’ in the NHS. I (since moving from a particularly awful GP practice that wasted half my life) am generally finding that consultants and A&E personnel and ambulance service people I discuss this with are in agreement that something on the lines of the service I’ve been pushing for, could make their lives a whole lot easier.
Of course, the upside down medical world we live in, is actually being pushed in entirely the opposite direction, where champion (chumps) like Wessely and Stone, are actually succeeding in gaslighting the holders of the purse strings into normalising dimensionless disease constructions like MUS and FND, where evidence is denied, and any search for it is forbidden!
More power to Dr Tuller’s elbow in 2020! (y) (y)
PJM, you mention Jon Stone and also say that the rare conditions world has issues with the ‘functional’ construct. Are you aware that the NORD (National Organization for Rare Disorders) website has a webpage on FND -https://rarediseases.org/rare-diseases/fnd/ with a report prepared by Jon Stone, Tim Nicholson and Bridget Mildon? It also provides a link to Stone’s neurosymptoms.org website. It seems rather strange that NORD has chosen to include this webpage since Stone et al indicate in the text that ‘FND’ is as common as eg Parkinson’s disease.
Thank you David for looking into this – it might be of great help for ME-patients f.x. i Denmark, where there is an ongoing discussion between Parliament (!) and the state institute for health (Sundhedsstyrelsen). The parliament (Folketinget) has decided that ME is a biological illness and that WHO’s diagnosis criteria should be used. But Sundhedsstyrelsen are reluctant to act accordingly. They still want to categorize ME as a «functional disorder». There are several stories about ME-patients suffering severely from treatment based on these ideas in Denmark. Patient representatives have been accusing Sundhedsstyrelsen of misleading Folketinget in the communication about the follow up of the parliaments decision. There is to be a consultation between these parties 20. January.