Trial By Error: A Post About Lupus and MUS, Not COVID

Andy

Andy

Retired committee member
This is another non-coronavirus post–my second in two days.

Before we were interrupted, I had been looking more into so-called “medically unexplained symptoms,” or MUS. A recently published study with data on the length of time needed to obtain a diagnosis of systemic lupus erythematosus, commonly known as lupus, has highlighted some of the core problems with the MUS construct. I mentioned this study in my Zoom appearance last month with the Sheffield ME & Fibromyalgia Group.

The study is called “Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.” It was published on February 26th by the journal Rheumatology Advances in Practice. The corresponding author, Melanie Sloan, is a research associate in the Department of Public Health and Primary Care at Cambridge University.
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https://www.virology.ws/2020/04/08/trial-by-error-a-post-about-lupus-and-mus-not-covid/
 
“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.”
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Mission accomplished? That's basically the only goal of MUS: reduce healthcare-seeking behavior. Now what? It's hurting people and doing nothing else, well, aside from also insulting them. It's hurting people with medically uninteresting symptoms and people with "proper" "conventional" diseases. As MUS metastasizes further, there is only way for those numbers to go and it's up. 7 years is already a pathetic failure that doesn't seem to bother anyone other than the patients and all efforts seem directed at increasing that.

It would be illuminating to try and quantify the impacts on various diseases, how it delays diagnoses and harms other patient populations. Probably too expensive to do and the conclusions are pretty obvious, nobody wants to touch that.

Monkey paw lowers one finger
 
Makes me wonder how many people diagnosed with MUS actually do have lupus (or similar) who we have no data on as they will die never finding this out due to being denied any further investigations as a waste of time.
 
dave30th said:
Good question.
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I was denied investigations into Lupus at first, despite my GP flagging it up - the rheumatologist I saw first said the blood tests didn’t mean anything, I definitely had CFS and needed to do CBT. He refused to do any further investigations or tests.
If I hadn’t gone private after that and seen another doctor, I wouldn’t have got the diagnosis and would have continued down the MUS / PPS / CFS path only.
 
lunarainbows said:
I was denied investigations into Lupus at first, despite my GP flagging it up - the rheumatologist I saw first said the blood tests didn’t mean anything, I definitely had CFS and needed to do CBT. He refused to do any further investigations or tests.
If I hadn’t gone private after that and seen another doctor, I wouldn’t have got the diagnosis and would have continued down the MUS / PPS / CFS path only.
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so did you get a lupus diagnosis? And you also have a CFS or ME diagnosis?
 
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