New screening question to weed out providers quickly: what is a syndrome?

I told my POTS Dr what happened and she praised me for standing up for myself. She said "a syndrome is a collection of symptoms and we know how treat these symptoms" so that dude just told on himself and I'm not here for it

I'm so so lucky that I got in with Dr Bateman via telemed in 2019. She directed me to specialists for POTS, CCI/AAI, & EDS. I'm not sure if she's still seeing patients but the clinical guide on the BHC website is a fantastic resource

I've found great providers by asking other patients in my area! And finding specialists who know about the cluster usually leads to other specialists that they know of within the cluster. Telemed helps so much too

I'm so sorry you can relate. And I know how lucky and privileged I am to live where I live and to access these specialists! So I want family and friends to give them and me the respect we deserve

Yes you are so right! The person who called thinks I embarrassed him. Honestly, that provider embarrassed himself!

Thanks Erin! It totally minimizes all the work I am doing and have done! And then we get painted as bad guys for not accepting their ideas of help.

Also, when I have medical appts I have to pace for them bc of the mental & emotional exertion & PEM. I usually rest for 1-2 days before any appt, including telemed, & need 2-3 days after for recovery. Thinking you can just randomly call me to discuss my medical history ignored my lived experience

I understand that people want to help but I need you to help me in the ways I am asking for help - wear a mask around me and let me rest. That's too much to ask for I guess

I finally have a team of providers and experts that I trust. I was diagnosed by experts like Dr Bateman, Dr. Klinge and Dr. Henderson. I have a PT who is an EDS expert & knowledgeable on ME. I have a POTs Dr with lived experience. I've created medical education webinars with Dr Rowe - an expert.

I feel extremely minimized when someone thinks they're going to suggest something that I haven't already tried. It's ableist to assume that a provider you just met knows more about my body than I do. I feel unheard when someone assumes I want to tell my medical history to a stranger. I'm exhausted.

I was undiagnosed for 19 - 35 years with these. I've spent the last 6 years building a team of experts and finding treatments that have helped me improve. Improving with ME is nearly impossible but I have privilege. I've also tried many therapies that caused harm.

3-my first question to this provider was "do you think these conditions are real?" And his response was "well syndrome means we don't know what's going on." So I ended the conversation there. I know exactly what's going on with ME/CFS, POTS, TCS, MCAS, MALS, nutcracker - all syndromes.

I use Plex! Works well on the iPad

That's fantastic! A fiscally sponsored org might be the way to go. If people are doing work for the org, do you know if they could be paid as contractors? That's another thing I want. To pay people instead of relying on sick volunteers

But that is what I want, with a specific focus on uplifting marginalized people with ME! I want to be able to share resources for accessing medical care and social services and directly support people with financial aid

I have but it hasn't been good things unfortunately

Also any examples of charitable foundations that provide grants directly to people affected? Disability orgs specifically. TIA!