Request for input

Posted by Postcovidblues @bmspector, Mar 15 10:00pm

Hi folks - wondering if you could tell me below what you think of Mayo’s LC Clinic care model. As i understand it, it is to provide a diagnosis without testing for the biomarkers that past studies have identified (e.g., the complement system, cortisol levels, cell senescence in the brain, mitochondria performance, etc.), write long summary to your GP and not contacting your GP to discuss and coordinate your care, so placing the onus on you to get your GP to spend their 15 minutes reading and digesting the the document, with several recommendations that the GP may or may not be willing to do, so leaving you to pick and choose what you should advocate your GP to do, and then three months of life coaching (get rest, pace, etc.) and breathing exercises under the guise of biofeedback that most likely won’t work unless you do them for an hour or more, with the idea that this is all they will do and you’ll then have to figure out how to manage all your Long COVID care needs while working with doctors who will say “I dunno, go ask Mayo” and then terminating the patient relationship so that when your other doctors say “go ask Mayo,” you’ll have no idea where to turn.

Here are changes I believe are needed: firstly, to provide comprehensive care until you are determined to be as healthy as you can be or if that is too unreasonable, to actually be willing to talk with your GP to ensure they are on board with their recommendations and understand the condition so that you don’t have to go back to them when you are refused service and teach patients to advocate for themselves by training them on how to be prepared for a medical community that is most likely to assume that their standard of care is to treat a new disease with a patchwork of past scientific discoveries.

Secondly, as part of the care, identify studies that could benefit you and provide you with the support to get in.

Thirdly, as part of the care, investigate until an answer as to why something is happening is occurring; in other words, to spend the time and resources to identify the precise problem.

What are your ideas?

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