Discussion in 'Other psychosomatic news and research' started by Andy, Apr 9, 2020.
Here's the S4ME thread on the Lupus study David refers to:
Medically explained symptoms: diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmunity | Sloan et al. 2020
Just noticed a couple of small errors:
"In the case of both studies, it would be possible to challenge the numbers as non-representatives" Should the latter word be singular?
"Certainly they would likely they would be referred to psychotherapy" Repetition.
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.
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.
so did you get a lupus diagnosis? And you also have a CFS or ME diagnosis?
Yes I did get a lupus diagnosis
And I also have an ME/CFS diagnosis
Separate names with a comma.