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Physician requesting info on MECFS gaslighting
- Thread starter Jaybee00
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- gaslighting
Dr Sarikaya and his colleagues could make a very good contribution with this. Like other sub-specialty radiologists, neuroradiologists have a decent understanding of the limitations of current clinical imaging techniques and will often offer an informed diagnostic opinion despite negative imaging (#AllTestsAreNormal). An example in the neuro domain would be —
Previously fit and healthy young person, presents acutely following fever with intractable status epilepticus - no response to escalated therapies, intubated and ventilated. Extensive MRI of the neuraxis reveals no abnormality. Diagnosis: "Likely FIRES". This is a devastating condition with very poor outcome, probably postviral/immunometabolic (see also rarediseases). Of course the treating neurologists and intensivists would likely arrive at this conclusion anyway, even if the report simply said "no abnormality detected". But sometimes a prompt on the bottom of a report can be helpful, as I've noted a few times over the years.
I hope this paper covers the newer research neuroimaging findings that do not yet form part of the standard clinical imaging repertoire. It would be good to have a similar default in the minds of reporting neuroradiologists, such that an indication including symptoms of "fatigue", "PEM" etc with apparently normal imaging might conclude with "No abnormality detected: consistent with long COVID/neuro-PASC, ME/CFS or similar condition". This should help legitimise ME as a "proper" biological disease in the minds of those clinicians who might still be referring on the basis of it being psychological/functional.
Previously fit and healthy young person, presents acutely following fever with intractable status epilepticus - no response to escalated therapies, intubated and ventilated. Extensive MRI of the neuraxis reveals no abnormality. Diagnosis: "Likely FIRES". This is a devastating condition with very poor outcome, probably postviral/immunometabolic (see also rarediseases). Of course the treating neurologists and intensivists would likely arrive at this conclusion anyway, even if the report simply said "no abnormality detected". But sometimes a prompt on the bottom of a report can be helpful, as I've noted a few times over the years.
I hope this paper covers the newer research neuroimaging findings that do not yet form part of the standard clinical imaging repertoire. It would be good to have a similar default in the minds of reporting neuroradiologists, such that an indication including symptoms of "fatigue", "PEM" etc with apparently normal imaging might conclude with "No abnormality detected: consistent with long COVID/neuro-PASC, ME/CFS or similar condition". This should help legitimise ME as a "proper" biological disease in the minds of those clinicians who might still be referring on the basis of it being psychological/functional.
(Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston
That paper might be useful. It's probably worth reading through the thread to see the discussion as the author was writing her study up, but I think she did understand and her abstract seems suitably nuanced. I'm sure ME/CFS would be specifically mentioned in the paper.
That paper might be useful. It's probably worth reading through the thread to see the discussion as the author was writing her study up, but I think she did understand and her abstract seems suitably nuanced. I'm sure ME/CFS would be specifically mentioned in the paper.