NZ Herald running a series on EDS

The main paper in NZ is running a series of articles on people getting diagnosed with fictitious illness disorder. It seems to be people with EDS suffering from this.
Here are the links to the articles so far:

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12133645
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12173126
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12136978

It also highlights how the system for complaints seems to be broken.

 

Aaarrrgh!!!

Sadly nobody here will be the slightest bit surprised that there are doctors who insist on treating physiological symptoms as psychological and who consequently refuse biomedical investigation and treatment. The reported cases are particularly appalling examples; sadly even that no longer surprises. Very sorry to learn that the EDS community is battling the same battles we do.

Unfortunately there'll always be doctors who get things wrong for one reason or another - with some reasons being more forgivable than others - shouldn't be that way but that's the way it is. What really, really infuriates me is how the health authorities and even the complaints board deal with these cases. The default position seems to be to defend their own clinician at all costs and against all evidence. Here we have patients who had several other doctors, geneticists and psychologists confirm a medical diagnosis and psychological health. But their opinions don't count, the patients' even less.

 

https://www.healthpoint.co.nz/publi...pher-kenedi/at/auckland-dhb-general-medicine/

The world is full of nails when you are a hammer.

 

I was sectioned on 20th August 2014 and kept there for a month.

The staff in the psychiatric ward told me I wasn't in any pain and on one occasion refused to help me up after I'd fallen over due to a reaction from the medication they forced me to take. They forced me to walk around despite being bedbound, if I didn't walk to the cafeteria I wasn't fed properly. They would lock me out of my room to force me to exercise more.

After I was discharged I made a complaint because they made my ME permanently worse, in their response they classed my incarceration as a success story because they saw me walking around and talking to other inmates/patients. They said because nothing showed up on tests it was only logical to assume it must be psychological. My complaints were over-ruled and they got away with it.

 

So sorry you experienced this @DigitalDrifter, and that you had a permanent worsening of your level.

 

So sorry to hear that @DigitalDrifter ....

 

I too am sorry to hear this.

Perhaps one day your story will get more wide acknowledgment.

*As an aside for anyone who comes to this thread: is there a way to incorporate stories like Digital's as evidence against GET during the NICE discussions? Or elsewhere?

 

This is really mind-boggling. I don't understand why they wouldn't treat the patient's severe anemia - even if the diagnosis of Munchausen's was plausible.

It seems clear that the medical system is not equipped to sanely handle these exotic sorts of personality disorder categories - considering that a critical mass of their personnel seem to experience a moral panic any time one of the labels is attached to a patient, and the institutional mechanisms are such that the remaining sane personnel cannot intervene in the panic state without extreme struggle.

 

I appreciate that denial of physical illness is a real problem but I find this sort of reporting unhelpful. It is impossible to work out from the articles what the people involved are suffering from. One thing I am fairly sure of is that 'EDS' is not a helpful term. It has got the reputation of being diagnosis that can explain anything you like without having any clearly defined diagnostic criteria. The concept of ME based on PEM is much more real than 'EDS'. One of the patients is said to have arthrogryposis, which is something quite different.

It certainly sounds as if the physician diagnosing factitious illness has no idea how to solve the problem but it is not clear exactly what the solution is. Giving repeated blood transfusions for anaemia is not a simple safe procedure. After a while the patient is likely to have become sensitised to minor blood group antigens and there is always the risk of unknown infection. There is an awful lot we are not told about what has been going on here.

 

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12140133
Another article today.

 

Again, there is nothing that makes sense to me here in terms of an 'EDS' diagnosis. There must be two sides to the story here. The journalist is pushing a line that I worry is misleading people.

 

I wonder if that's not the important part but the real story is that women with a diagnosis of "something" are being treated as if they have a Munchhausen's type illness instead.

 

The situation is complicated and maybe that is what is the most important thing of all. It isn't helped by diagnoses that do not really mean much.

There are various ways of interpreting 'Munchausen syndrome' but one of them is that patients concoct stories of having non-existent illnesses. If a patient is led to believe by physicians that they may have almost any symptom from an illness that has no clear definition and in the context is getting pretty close to being non-existent and concocted, does that differ importantly from Munchausen? It may well do but I think it all gets very blurred.

What I think is irresponsible is journalists putting a story across when they have no understanding of what is going on but find it convenient to take the line that pulls the most heartstrings. I would much prefer it if the story was that these people are suffering from illnesses that nobody understands at all and that the key lesson is that all doctors should admit that. Pitting one lot against another helps nobody.

 

Of course it's different. Mistakenly believing to have a specific illness is not the same thing as faking an illness for some form of gain.

 

I am not sure it is as simple as that. Do we believe the story that Munchausen syndrome is all about faking illness for some form of gain? My own experience was of patients who had a problem I had no way of understanding but which in some cases involved making themselves worse, for whatever reason. I agree that the analysis attributed to the psychiatrists in these articles is not likely to have been helpful. But do we actually know what these psychiatrists said or thought? Do we actually know that a diagnosis of Munchausen syndrome was made, or what might have been meant by it? As far as I can see at least they may have been quite right to suggest that problems were not due to 'EDS'.

What worries me here is the implication that people with 'EDS' deserve sympathy but people with 'Munchausen syndrome' do not. My wife suffered from an illness that involved her making herself worse. She is only alive today because she was taken seriously and treated with both sympathy and psychiatric skill.

 

According to Wikipedia:

By definition, a diagnosis of Munchhausen syndrome implies that the person is faking an illness.

 

According to Webmed:

Many of these have innocuous explanations besides Munchausen syndrome. For example, "extensive knowledge of medical terminology" is not unusual in patients that need or want to understand their own health problems better. Various biases in the observer can also create the impression that there is something fishy about the patient's "willingness or eagerness to have medical tests, operations, or other procedures" or that relapses are "predictable" in a way that suggests feigned illness. Something like "presence of symptoms only when observed" could also simply be due patients stopping faking to be well when in the presence of a doctor that they wish to communicate their symptoms to in the hopes it will lead to being given useful treatment.

I know there are people who do things like injecting themselves with feces to provoke fever so feigned illness really exists. Unfortunately medicine seems biased towards assuming the worst when the case is perplexing or complex.

 

My take-home message from the articles is not that any one illness is more deserving of sympathy than another, it’s that getting a diagnosis of factitious illness results in sympathy disappearing and medical issues -such as severe weight loss being under-treated. What seems to me to be too prevalent is that specialists only consider diagnoses within their own specialism. And once a patient is under the mental health team in any form, their ‘story’ is not seen as valid.

When I was still working in the health system, I had a patient referred for swallowing difficulties from the anorexia team. This patient quite clearly stated that the problem was not that he/she did not want to eat but that swallowing the food was difficult. Months had been spent under the mental health anorexia service with ongoing weight loss. The patient did indeed have difficulty swallowing, and an urgent referral to neurology following the modified barium swallow exam resulted in a neurological diagnosis, followed by the placement of a feeding tube.

It would be interesting to know whether the diagnosis of Munchausen’s is more often accurate than not. I suspect it is vastly over-diagnosed. And the patient is the one who suffers.

 

I agree that a lot of structural or physiological problems can be misdiagnosed as due to inappropriate beliefs etc. However, my point is that in these cases we do not actually know what the reality was. Everything is presented in terms of a garbled account of a diagnosis of very doubtful reality that seems very unlikely to explain anything. And the opposite problem is equally serious - when illness due to disturbed thinking is not recognised for what it is. People die from that mistake too. Just as there is a danger of doctors saying it is all in her mind, there is a danger of them saying it's just all her 'EDS'. After all that is what PWME complain of as a problem - symptoms being dismissed as just ME.