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Kira Stoops's avatar

We CANNOT discuss long covid without discussing ME/CFS.

Katy talks about “graduates”—we are the graduates.

We have figured out insurance, separated snake oil from helpful supports, and learned the ropes.

Long Covid absolutely isn’t new…what’s new is the virus sweeping an unprotected population, and many people getting postviral illness at once so there’s media attention on it.

We MUST bring Me/CFS into the conversation.

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Valerie LeComte DO's avatar

I'm a doctor and I have so many thoughts about how the medical system propagates these online and alternative health communities. First off, I want to say that most doctors are amazing, caring people that are incredibly overworked and doing the best they can, and doing what they were trained to do. But what we were trained to do is the problem. We were trained to put people's symptoms into a known diagnosis. And when things don't fit, there is no room for the unknown, the new, the unexplained. Science has become the ultimate answer, forgetting that science is also a search to explain the unknown. The system won't admit it doesn't have all of the answers. So the onus is then put on the patient when there are no answers-people (mainly women) are told all of the time that it is all in their head and it is due to stress instead of searching harder for a cause (highly recommend Doing Harm by Maya Dusenbery for more on this). Patients are left with no answers and no options, so they turn to the internet and to alternative medicine for what they need. And these range from immensely helpful to immensely harmful. I fully support people being able to do some of their own research, but also there are really dangerous and exploitive recommendations out there, and a lot of people that stand to profit of off the desperation to feel better.

All of this further contributes to the fact that health is a privilege, particularly in the US. That being able to find a doctor that will listen and believe you is a privilege. Agree with the IFM recommendation-it's not perfect, but it is a good starting point. Personally, I'm starting a practice that is on the natural/open to other options side and it is a strange place to be when I'm also still in practicing in such a broken system. I have hope that things are starting to move in the right direction, but also see how very far we have to go.

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