Learner1
Senior Member
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- Pacific Northwest
Hi @Learner1 it reminds me of somone I talked to on Twitter, she suffered from all kinds of disabling symptoms, CFS like, following sepsis ( she was in ICU for a couple of weeks). She never recovered. She says there are,a group of them suffering from post-sepsis syndrome.
The second comment is that unfortunately, and I speak for my region, the psysicians dealing with mito diseases strictly deal with genetic mito diseases and not acquired diseases. When I had a muscle biopsy several years ago, i was dropped when my Mito DNA was normal. There,is simply nowhere to go, and we are no one's problem... unless one wants group therapy.
Infections and immune dysfunction are definitely a problem.
I agree about having nowhere to go. The wait for specialists, even if they'll see us, is far too long. Too many if us with problems and too little help.
I went to the United Mitochondrial Disease Foundation Conference this past June and saw the top miito doctors, and learned about primary and secondary mitochondrial disease. Robert Naviaux spoke there about cell danger response, toxins and mitochondrial damage from medications.
They were open to people having secondary mitochondrial disease. I spoke with a woman from the FDA whom told me I ought to be following the work being done with CFS.
So, big things are happening, but help rltoday ides elusive, and we're a long way from practically applied answers that insurance will pay for to cure us.