This is an interview by David Tuller of Maya Dusenbery on the publication of her book Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, publishes in 2018. I’ve not read it but article certainly pertinent to many here. Has anyone read this book?
MUS (medically unexplained symptoms) ... - Functional Neurol...
I’d reply “not if the price was that so many people wrongly diagnosed felt worse”!
A couple of days ago someone with the same rare condition I've got (Mal de Debarquement Syndrome) was asked to research 'fnd' to see if 'it was a fit'. Effectively she was being asked to self-diagnose with a core psychiatric disorder.
So we know that 'fnd' got coded partly so that drs could get paid for making this dx yet now patients are being required to do their work for them. Fine. Pay us then.
I find it interesting how drs want to prescribe cbt for ‘functional’ things like ibs when cbt is so hard to come by for any mental ill-health issue where it is far more obviously pertinent and useful, and only surely more supposition where ‘functional’ is concerned. Whether any notice will be taken, and soon enough, of the research into the dubiousness of cbt’s effectiveness or lack there of is another, frustrating, matter.
Thanks for drawing attention to these papers. A very valid point is made - why no studies into misdiagnosis. If the medical profession is to make advances in MUS then, surely, they need to know how many misdiagnoses there are and what evidence was used in the first place that led to the misdiagnosis.
There was a research study into misdiagnosis of functional limb weakness undertaken.
But it was led by the neurology department at the Western General in Edinburgh where Jon Stone presides. So I, for one, feel it was likely to be very blinkered. The deaths they mention occurring over this 14 year period are supposedly unrelated to F word ie strokes and cancer. But (APS) Antiphospholipid Syndrome can cause neuro symptoms and limb weakness prior to strokes, vascular conditions can cause limb weakness prior to atherosclerosis and paraneoplastic disorders can cause neuro symptoms long before the terminal cancer is diagnosed.
My own limb weakness was diagnosed as functional but turns out that it’s much more likely to be a generalised lymphedema or vascularity as part of my connective tissue diseases 🙄🤬
Thanks. What on earth was that "slide show" explanation on YouTube - looked like something you'd do with kids in a nursery. And I get your point about later deaths recorded as being down to something else. One of the ways that the mutation in ion channelopathy can present is in vascular problems. The difficulty with getting members of our community to let us know about a later misdiagnosis is that they are unlikely to return to our group to let us know.
Yes this, to my mind, is the biggest problem with diagnosing anyone with “FND”. To me it seems a profoundly unethical diagnosis as you know.
Not only does it mean that some, like my late mum (posthumously diagnosed by the coroner with severe atherosclerosis and connective tissue diseases as causes of death), lose their trust in doctors entirely.
She was diagnosed with IBS and knew this to be wrong but never went back to a GP to challenge this diagnosis! If she had seen a good GP she probably would have still been alive now and enjoying her grandchildren. Of course this would never count as a misdiagnosis in IBS misdiagnosis stats because IBS probably wasn’t IBD but was part of complex mix undiagnosed systemic diseases just like my own.
So I think this newly published research paper is also very relevant in this context when you consider that 47% of Lupus and connective tissue diseases (CTD) are misdiagnosed first with a mental health or conversion disorder eg health anxiety, FND, Fibromyalgia or IBS. And diagnosis of Lupus or related CTD takes an average of 7 years and 11 months?!
Ps loved your description of Jon Stone’s performance as being “like something you’d do with kids in a nursery”. Sums it up beautifully!
Oh I dunno - it serves its purpose in exposing the emperor’s invisible clothes rather well don’t you think?! He’d have be better off sticking to psychobabble than dragging his hoovers sign out of the long locked cupboard! 😉😏😈☠️🏴☠️
PS my comment about this video seems to have been removed from YouTube now so I’ll re post it here:
“I just watched the video - interesting. But I am sceptical.
What I would like to know is whether the researchers and Jon Stone et al would consider misdiagnosis to include patients who turned out to have disorders such as PoTS or EDS or a rheumatic autoimmune disease - given that the FND-like symptoms and even subsequent fatalities might actually be related to a disease which can cause secondary weakness, seizures, movement disorder or tremors etc?
I suspect not.
For example if the follow up showed that a person diagnosed originally with FND, had later died of Multiple Myeloma or Amyloidosis, then this could be recorded as an unrelated death from cancer in an older person (as described by the researcher here) rather than a misdiagnosis. But in fact these rare forms of cancer, usually affecting older people, often cause secondary neurological symptoms.
Similarly a person misdiagnosed with FND might die from cardiovascular problems caused by Lupus, Vasculitis or PoTS - or a stroke from APS - but this would not be recorded as a misdiagnosis presumably?
I therefore suspect that the low misdiagnosis stats here are misleading, even inaccurate. But if someone from the Edinburgh university research team wants to explain that I’m wrong then it would be very helpful.
Otherwise I will continue to assume that all functional actually means in this context is symptoms that are not primarily neurological.
In rheumatology patients are often told conditions are primary or secondary rather than assuming anything that isn’t primary must be functional, as most neurologists seem to do.
I think FND misdiagnosis data should not be collated by university neurology departments for this reason - because it isn’t truly scientific or objective enough. All the researchers here are actually following up is whether a person goes on to develop a primary neurological disease such as MS or PD. If they don’t then the original diagnosis of FND is upheld, regardless of whether secondary neurological symptoms might have been caused by a different biomedical process or not. FND is a diagnosis of exclusion - so the broader medical picture must be fully considered before a diagnosis can be made. And exclusion would need to include seronegative presentations of all rheumatic diseases - which is almost impossible. Otherwise the diagnosis is as speculative as Freud’s conversion disorders once were.
So I remain unconvinced by these misdiagnosis rate statistics.”
This newly published paper will be an interesting read for you I think artmom. Cleverly, the academic who led the research has used the term MES - medically explained symptoms.
There were 233 eligible respondents. Mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six percent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future healthcare-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, and yet the majority reported receiving no or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.”
I read “Doing Harm” quite recently and found it very thought provoking but also not a little fury inducing!! The times I read my kindle tend to be in the GP waiting room and in hospitals - ie once or twice a week now.
Re CBT: my neurologist referred me for neuro psych assessment for FND overlay and the assessment led to the clinical psychologist putting me down for ACT to help me accept and cope better with my biomedical conditions. I was okay with this but she explained there is up to a year or more wait due to the small specialist service being so in demand. I understood this at the time. That was 8 months ago!
But now my thoughts have become more selfish.
I read her long assessment letter - emailed her pointing out factual inaccuracies, received a phone call from her at the worst possible moment when I was very tearful and at the end of my tether with trying to get referral out of area, trying to get help with ‘IBS’ caused by my diagnosed diseases, trying to cope with skin cancer immunotherapy cream, trying to juggle meds, appointments for all parts of my body. I told her “it’s the rarity you’re all missing!”. The thing is that if you have a rare autoimmune disease, let alone 2 or 3 - you do end up depressed. Apart from anything the length of time it takes to get a trustworthy diagnosis for each - the physical and emotional toll is massive!
So I find myself thinking that people with cancer and diabetes and cardiovascular diseases etc have one part of their bodies affected. Or if you have Parkinson’s or MS there huge charities with groups who meet up and therapies and counselling through Macmillan and Maggie’s etc.
If you have a confirmed psychiatric disorder then it’s often really hard to get the help you need but there are at least emergency mental health nurses people can access if suicidal/ in crisis. I know this because I’ve had to help a friend by accessing these for her. She’s now in a really much better place because of all the help she’s receiving from her CMHN, discount access to a gym, art classes for people diagnosed with MHCs - walking group for people with depression where they hug trees and help each other.
But if you have a rare disease of any sort then it is likely that it won’t have been easy to get it diagnosed because doctors see these so infrequently - if ever. So where do we turn when we are finally diagnosed after years, decades even, of being told our symptoms are psychomatic? Trust has broken down to such an extent that we become isolated even from loved ones, friends and colleagues. We go into doctor’s appointments grinning with false jocularity because we are so terrified of being “heart sink patients”.
So my view now is that people like me need ACT /CBT just to debrief and to have someone who we can express our feelings of anger, betrayal and someone to explain all the above to.
But this is for those of us with rare diseases I’m speaking of as a priority group - not the undiagnosed or wrongly diagnosed. How on earth can any doctor expects patient to reach a stage of acceptance for a condition we doubt the existence of or for medically unexplained symptoms? Expecting anyone to accept these and commit to a state of acceptance would surely just be wrong, bad medicine, being gaslit?
So I think people like me should be fast tracked to ACT or CBT before we implode - where the undiagnosed or those who are already receiving very good physical and emotional support for common conditions through charities or centres like Maggie’s - should not be faster tracked as a priority as they currently are!
There that’s me turned very selfish and hard nosed now because, by the time I finally start my work with a clinical psychologist - my dysfunctional immune system probably will have wiped the floor with me and I won’t be able to take it up!!x
It isn’t. But as I’ve just said to a battle weary friend - our humour and our ability to cut through the 💩💩💩will eventually win. We have nothing to lose by exposing this kind of hogwash and we also have each other. X
The Lupus UK friend who wrote the research paper about “Medically Explained Symptoms” and the impact of misdiagnosis of stuff like ‘FND’ has on us - wrote earlier on a Lupus UK post saying “I know some people don't like the wolf link with lupus - but somebody gave me a Rudyard Kipling quote the other day that I thought described the team spirit of the forum very well.
'“For the strength of the Pack is the Wolf, and the strength of the Wolf is the Pack.”
So I think this community pack/ forum badly needs to apply this lsame Kipling metaphor to itself about MUS and ‘FND’.
I’m lucky to have found my pack - now you guys need to find yours and not allow the gaslighters to win! Maybe it’s time for a MUS HU community to be formed called “from MUS to MES”? Now that’s a true “hope” to my mind 🤗