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I agree 100%! There is a clear yawning gap between our needs as LC patients and what the medical community is willing to do. I believe this gap would be best addressed by a multidisciplinary setting where patients could go and have our care centralized with appropriate supports instead of asking us to overcome our inherent biological limits and be our own advocate and care coordinator. This was done back in the day by FDR for Polio patients and makes so much sense for helping us to get back to our lives. However, since it hasn’t been done for post-viral illnesses, I doubt it’s feasible (we all likely would know about it since we all do a ton of research on our condition.). I’ve seen others on here have this idea too.
I think you’ve made a good point - it seems like you’re saying there is no accountability for ensuring we receive the right and appropriate care as there would be for attorneys (I used to be one). I would add that there are no controls to hold doctor’s liable for fulfilling their Hippocratic oath to meet a standard of care that would help us LC patients specifically.
I would also add that this lack of someone digging in to my illness and helping to develop a care plan specific to my needs is something I also found at Mayo. I know that there are tons of studies around the world using microscopic techniques to identify problems that were done well before I ever went there and I have to say I was disappointed that I was given a battery of “standard tests” - like a check the box exercise - and given a diagnosis that is vague with a long list of recommendations that may or may not help. This is specific to the specialty clinics as my neurologist and allergist there are caring enough to help me as best as they can. However, despite all that testing, I still don’t know what’s wrong with me. So, if Mayo is supposed to “solve the unsolvable,” people who go there for LC care are going to be disappointed.
In any event, let’s hope someone soon defines a standard of care that allows for ANSWERS that will hold the medical community accountable.
Replies to "I agree 100%! There is a clear yawning gap between our needs as LC patients and..."
"I would also add that this lack of someone digging in to my illness and helping to develop a care plan specific to my needs is something I also found at Mayo. I know that there are tons of studies around the world using microscopic techniques to identify problems that were done well before I ever went there and I have to say I was disappointed that I was given a battery of “standard tests” - like a check the box exercise - and given a diagnosis that is vague with a long list of recommendations that may or may not help. This is specific to the specialty clinics as my neurologist and allergist there are caring enough to help me as best as they can. However, despite all that testing, I still don’t know what’s wrong with me. So, if Mayo is supposed to “solve the unsolvable,” people who go there for LC care are going to be disappointed."
So true. I've been seen at Mayo's neurology, cardiology and audiology departments for nearly a couple of years now for 'head awareness' and lightheadedness issues stemming from unconfirmed Long COVID. I've had nearly every possible scan and test. All normal. When diagnostic options apparently ran out I was ultimately referred to Mayo's Physical Medicine and Rehabilitation department...a sub-clinic within Mayo's Psychiatry and Psychology department. There I had an extended visit with a psychiatrist who determined that I was mentally well. I was, however, provided a bag full of pamphlets and DVDs dealing with how to cope with my symptoms, relax, decompress...and a recommendation to seriously consider extended Vestibular and Balance Rehabilitation therapy somewhere. Meanwhile I continue to get lightheaded every time I kneel, stoop or bend over...and it's getting worse! Physical movement is causing a physical reaction...but evidently "it's all in my head".
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"...it seems like you’re saying there is no accountability for ensuring we receive the right and appropriate care as there would be for attorneys (I used to be one)."
That is absolutely what I am saying. Arguably, spending a mere 15 minutes to address a months-long, complex issue falls well below an acceptable standard of care. Some of the good doctors I have spoken to understand that and schedule appropriate time; others think they can solve things in the 15 minutes they have set aside (which they are more often than not late for.)